studi literatur pengaruh bereavement life review …

STUDI LITERATUR PENGARUH BEREAVEMENT LIFE

REVIEW TERHADAP KESEJAHTERAAN SPIRITUAL

PADA KELUARGA PASIEN DENGAN PENYAKIT

TERMINAL

Oleh :

Muhammad Alvin Abdillah

(G1b117028)

Fakultas Kedokteran Dan Ilmu Kesehatan

Universitas Jambi

2020

STUDI LITERATUR

PENGARUH BEREAVEMENT LIFE REVIEW TERHADAP

KESEJAHTERAAN SPIRITUAL PADA KELUARGA

PASIEN DENGAN PENYAKIT TERMINAL

Skripsi

Untuk memenuhi sebagian persyaratan

mencapai derajat Sarjana

Di susun Oleh :


G1B117028

PROGRAM STUDI KEPERAWATAN

FAKULTAS KEDOKTERAN DAN ILMU KESEHATAN

UNIVERSITAS JAMBI

2021

i

PERSETUJUAN SKRIPSI

STUDI LITERATUR


KESEJAHTERAAN SPIRITUAL PADA KELUARGA PASIEN DENGAN

PENYAKIT TERMINAL

Disusun Oleh :


G1B117028

Telah Disetujui Dosen Pembimbing Skripsi

Pada

Pembimbing Substansi Pembimbing Metodologi

Yosi Oktarina, S.Kep., M.Kep., Ners Dini Rudini, S.Kep., Ners., M.Kep

NIP. 198910172015042002 NIP. 198812012014041001

ii

HALAMAN PENGESAHAN

Skripsi dengan judul STUDI LITERATUR: PENGARUH BEREAVEMENT

LIFE REVIEW TERHADAP KESEJAHTERAAN SPIRITUAL PADA

KELUARGA PASIEN DENGAN PENYAKIT TERMINAL yang disusun

oleh Muhammad Alvin Abdillah, NIM G1B117028 telah dipertahankan

didepan tim penguji pada tanggal Juli 2021 dan dinyatakan lulus

Dengan tim penguji

Ketua : Yosi Oktarina, S.Kep., M.Kep., Ners

Sekretaris : Dini Rudini, S.Kep., M.Kep., Ners

Anggota : 1. Andika Sulistiawan, S.Kep., M.Kep., Ners

2. Fadliyana Ekawaty, M.Kep.,Ns.Sp.Kep.An

Disetujui:

Pembimbing Substansi Pembimbing Metodologi

Yosi Oktarina, S.Kep., M.Kep., Ners Dini Rudini, S.Kep., M.Kep., Ners

NIP. 198910172015042002 NIP. 198812012014041001

Diketahui:

Dekan Ketua Jurusan Keperawatan

Fakultas Kedokteran dan Ilmu Kesehatan Fakultas Kedokteran dan Ilmu Kesehatan

Universitas Jambi Universitas Jambi

Dr. dr. Humaryanto, Sp. OT., M.Kes Dr. Muthia Mutmainnah, M.Kep, Sp. Mat

NIP. 197302092005011001 NIP. 197601202000122003

iii

STUDI LITERATUR


KESEJAHTERAAN SPIRITUAL PADA KELUARGA PASIEN DENGAN

PENYAKIT TERMINAL

Disusun Oleh :

MUHAMMAD ALVIN ABDILLAH

G1B117028

Telah dipertahankan dan dinyatakan lulus didepan Tim Penguji

Pada tanggal

Ketua Sidang : Yosi Oktarina, S.Kep., M.Kep., Ners

Sekretaris : Dini Rudini, S.Kep.,Ners.,M.kep

Penguji I : Andika Sulistiawan, S.Kep., M.Kep., Ners

Penguji II : Fadliyana Ekawaty, M.Kep.,Ns.Sp.Kep.An

iv

SURAT PERNYATAAN KEASLIAN TULISAN

Saya yang bertanda tangan dibawah ini :

Nama : Muhammad Alvin Abdillah

NIM : G1B117028

Program Studi : Keperawatan Universitas Jambi

Judul Skripsi : Studi Litertur Pengaruh Bereavement Life Review Terhadap

Kesejahteraan Spiritual Pada Keluarga Pasien Dengan Penyakit

Terminal

Menyatakan dengan sebenarnya bahwa Skripsi yang saya tulis ini benar-

benar hasil karya saya sendiri, bukan merupakan pengambilan tulisan atau pikiran

orang lain yang saya akui sebagai tulisan atau pikiran saya sendiri. Apabila

dikemudian hari dapat dibuktikan bahwa Tugas Akhir Skripsi ini adalah hasil

jiplakan, maka saya bersedia menerima sanksi atas perbuatan tersebut.

Jambi, 29 Juni 2021

Yang membuat pernyataan


NIM : G1B117028

v

KATA PENGANTAR

Bismillah, Alhamdulillaahi Rabbil ‘alamin, segala puji syukur kita ucapkan ke

hadirat Allah SWT yang telah melimpahkan rahmat dan karunianya sehingga

penulis dapat menyelesaikan proposal studi literatur ini yang berjudul “Studi

Literatur Pengaruh Bereavement Life Review Terhadap Kesejahteraan

Spiritual Pada Keluarga Pasien Dengan Penyakit Terminal”. Penyusunan

proposal ini tentunya tidak terlepas dari bantuan, bimbingan, dan dorongan

berbagai pihak, maka sebagai ungkapan hormat dan penghargaan penulis

mengucapkan terima kasih yang sebesar-besarnya kepada:

1. Prof. Drs.H.Sutrisno,M.Sc.,Ph.D selaku Rektor Universitas Jambi.

2. Bapak Dr.Humaryanto.dr.Sp.OT.,M.Kes selaku Dekan Fakultas Kedokteran

dan Ilmu Kesehatan Universitas Jambi.

3. Dr.Muthia Mutmainnah.,M.Kep.,Sp.Mat selaku Ketua Jurusan Keperawatan.

4. Ibu Fadliyana Ekawaty,M.Kep.,Ns.Sp.Kep.An selaku Sekretaris Jurusan

Keperawatan

5. Ibu Yosi Oktarina,S.Kep., M.Kep., Ners selaku Ketua Program Studi

Keperawatan Universitas Jambi dan sekaligus sebagai Pembimbing

Akademik dan Pembimbing Substansi yang telah banyak membimbing,

memberikan waktu, arahan, masukan, serta motivasi dalam proses

perkuliahan dan penyusunan proposal ini.

6. Bapak Dini Rudini S.Kep, M.Kep., Ners selaku pembimbing Pembimbing

Metodelogi yang telah banyak membimbing, memberikan waktu, arahan,

masukan, dan motivasi dalam penyusunan proposal ini

7. Bapak dan Ibu dosen Staf FKIK khususnya Program Studi S-1 Keperawatan

Universitas Jambi yang telah memberikan pengetahuan yang bermanfaat

selama penulis kuliah.

8. Orang tua tercinta ayah Said Alwi dan ibu Sri Amizar serta adik Miya Rizal

Lia yang telah menjadi penyemangat hidup, memberikan doa dan dukungan

baik moril maupun materil kepada penulis, sehingga penulis dapat

vi

menyelesaikan proposal ini.

9. Sahabat seperjuangan penulis Tata, Sri, Nopi, Titi, Rinida, Windi, Nova,

Aulia, Ditya, Wike dan Alda yang telah memberikan motivasi dan semangat

dalam mengerjakan proposal ini.

10. Teman-teman program studi S-1 Keperawatan angkatan 2017 Universitas

Jambi yang telah memberikan motivasi, dukungan dan semangat dalam

menyelesaikan proposal ini.

Penulis menyadari bahwa penulisan proposal ini masih jauh dari kata

sempurna, penuh dengan kekurangan dan keterbatasan yang ada pada diri penulis.

Oleh karena itu penulis mengharapkan saran dan masukan dari semua pihak yang

bersifat membangun untuk menyempurnakan proposal ini sehingga dapat

bermanfaat bagi kita semua.

Jambi, Maret 2021

Penulis

vii

DAFTAR ISI

PERSETUJUAN SKRIPSI ...................................................................................... i

HALAMAN PENGESAHAN ................................................................................. ii

STUDI LITERATUR ............................................................................................. iii

SURAT PERNYATAAN KEASLIAN TULISAN ............................................... iv

KATA PENGANTAR ............................................................................................ v

DAFTAR ISI ......................................................................................................... vii

DAFTAR TABEL ................................................................................................... x

DAFTAR GAMBAR ............................................................................................. xi

DAFTAR LAMPIRAN ......................................................................................... xii

RIWAYAT HIDUP .............................................................................................. xiii

ABSTRACT ......................................................................................................... xiv

ABSTRAK ............................................................................................................ xv

BAB I PENDAHULUAN ....................................................................................... 1

1.1 Latar Belakang ................................................................................................. 1

1.2 Rumusan Masalah............................................................................................ 5

1.3 Tujuan Penelitian ............................................................................................. 5

1.4 Manfaat Penelitian ........................................................................................... 5

BAB II TINJAUAN PUSTAKA ............................................................................. 7

2.1 Keperawatan paliatif ........................................................................................ 7

2.1.1 Definisi ................................................................................................... 7

2.1.2 Tujuan Perawatan Paliatif ....................................................................... 7

2.1.3 Prinsip Perawatan Paliatif ....................................................................... 8

2.1.4 Perkembangan Perawatan Paliatif .......................................................... 9

2.2 Penyakit Terminal.......................................................................................... 12

2.2.1 Definisi ................................................................................................. 12

2.2.2 Kriteria Penyakit Terminal ................................................................... 12

2.2.3 Jenis Penyakit Terminal........................................................................ 12

viii

2.2.4 Manifestasi Klinis Fisik ........................................................................ 13

2.3 Keluarga ......................................................................................................... 14

2.3.1 Definisi ................................................................................................. 14

2.3.2 Tipe Keluarga ....................................................................................... 14

2.3.3 Struktur Keluarga ................................................................................. 15

2.3.4 Peran Keluarga ..................................................................................... 15

2.3.5 Fungsi keluarga..................................................................................... 16

2.4 Kesejahteraan spiritualitas ............................................................................. 17

2.4.1 Konsep Kesejahteraan Spiritual ............................................................ 17

2.4.2 Alat Ukur Kesejahteraan Spiritual ........................................................ 17

2.4.3 Bereavement Life Review dalam Peningkatan Spiritualitas ................ 18

2.5 Bereavement life review ................................................................................. 19

2.5.1 Definisi ................................................................................................. 19

2.5.2 Tahap Proses Berduka .......................................................................... 19

2.5.3 Jenis Berduka ........................................................................................ 22

2.5.4 Respons Berduka .................................................................................. 22

2.5.5 Tahapan proses bereavement life review .............................................. 26

2.6 Kerangka Teori ............................................................................................... 30

2.7 Kerangka Konsep ............................................................................................ 31

BAB III METODOLOGI PENELITIAN.............................................................. 32

3.1 Rancangan Strategi Pencarian Studi Literatur ............................................... 32

3.2 Kriteria Studi Literatur .................................................................................. 32

3.3 Tahapan Studi Literatur .................................................................................. 33

3.4 Peta Studi Literatur ........................................................................................ 34

BAB IV HASIL DAN PEMBAHASAN .............................................................. 35

4.1 Hasil Kajian Studi Literatur ..................................................................... 35

4.2 Pembahasan Hasil Kajian Studi Literatur ................................................ 45

4.3 Keterbatasan Penelitian ........................................................................... 54

ix

BAB V KESIMPULAN DAN SARAN ............................................................... 55

5.1 Kesimpulan .............................................................................................. 55

5.2 Saran ........................................................................................................ 55

DAFTAR PUSTAKA ........................................................................................... 57

x

DAFTAR TABEL

Tabel 2.1 Pemahaman Teoritis Proses Berduka ............................................... 21

Tabel 3.1 Hasil temuan artikel ......................................................................... 33

Tabel 4.1 Gambaran Umum artikel .................................................................. 36

xi

DAFTAR GAMBAR

Gambar 2.1 Kerangka Teori ......................................................................... 30

Gambar 2.2 Kerangka Konsep ..................................................................... 31

Gambar 3.1 Tahapan Studi Literatur ............................................................ 33

Gambar 3.2 Peta Studi Literatur ................................................................... 34

xii

DAFTAR LAMPIRAN

Lampiran 1. Jurnal

Lampiran 2. Kartu Bimbingan Skripsi

xiii

RIWAYAT HIDUP

Muhammad Alvin Abdillah dilahirkan di Jambi, Kota Jambi pada tanggal 25

November 1998 merupakan anak dari bapak Said Alwi dan ibu Sri Amizar. Penulis

menyelesaikan pendidikan Taman Kanak-Kanak di TK Al-Azhar, Jambi tahun

2005, pada tahun yang sama penulis melanjutkan pendidikan di SDIT Al-Azhar,

Jambi, lulus pada tahun 2011 masih ditahun yang sama penulis melanjutkan

pendidikan di SMPN 8 Kota Jambi dan lulus pada tahun 2014, penulis

melanjutkan pendidikan di SMAN 6 Kota Jambi dan lulus pada tahun 2017. Pada

tahun 2017 penulis diterima di Fakultas Kedokteran dan Ilmu Kesehatan

Universitas Jambi Pada Program Studi Ilmu Keperawatan melalu jalur Seleksi

Mandiri Masuk Perguruan Tinggi Negeri (SMMPTN). Riwayat organisasi sebagai

anggota dapartemen perkembangan sumber daya mahasiswa (PSDM) Himpunan

Mahasiswa Keperawatan Fakultas Kedokteran dan Ilmu Kesehatan Universitas

Jambi tahun 2018-2019. Tahun berikutnya menjabat sebagai anggota Departemen

perkembangan sumber daya mahasiswa (PSDM) Himpunan Mahasiswa

Keperawatan Fakultas Kedokteran dan Ilmu Kesehatan Universitas Jambi periode

2019-2020.

xiv

ABSTRACT

Background: At this time the development of modern palliative nursing which has

been very fast is supported by the increasing number of cases of terminal illness

with the need for end-of-life care. At the direction of family-focused care is

palliative care. Because an important element in the process of caring for patients

is the family, which is where the patient is in a terminal state to go to a peaceful

death process. Besidescancer and stroke, chronic obstructive pulmonary disease,

degenerative disease, heart failure, cystic fibrosis, parkinsonism, infectious

diseases such as hiv/aids and genetic diseases are in a terminal state..

Methods: This research is a literature study using the literature review method,

searching for articles using 4 electronic bases, namely in the form of google

scholar, pubmed, researchgate and garuda portal, with the keywords Bereavement

life review, family, spiritual welfare. The criteria for articles are articles with

Bereavement life review interventions, original articles, full papers, published

from 2010-2020

Results: From 10 articles, the intervention group that was given a Bereavement

life review was effective in increasing family spiritual well-being,

Conclusion: The results of literature review studies that have been conducted on

bereavement life review and spiritual well-being can be concluded that giving a

bereavement life review to the patient's family can improve the spiritual well-

being of the patient's family. This is because the bereavement life review is able to

reflect and overcome negative feelings in the patient's family by turning these

negative feelings into positive things, so that the patient's family can accept the

condition or event of grief that befell his family members.

Keywords: Bereavement life review, family, spiritual well-being

xv

ABSTRAK

Latar Belakang: Pada saat ini berkembangnya keperawatan paliatif modern yang

sudah sangat pesat di dukung dengan bertambahnya kasus penyakit terminal

dengan kebutuhan perawatan end-of-life. Di arahkannya perawatan yang terfokus

kepada keluarga ialah keperawatan paliatif. Karena elemen penting dalam proses

perawatan kepada pasien adalah keluarga, yang dimana pasien tersebut dalam

keadaan terminal untuk menuju proses kematian yang damai. Selain kanker dan

stroke, penyakit paru obstruktif kronis, penyakit degeneratif, gagal jantung

(heart failure), cystic fibrosis, parkinson, penyakit infeksi seperti hiv/aids dan

penyakit genetika merupakan dalam keadaan terminal.

Metode: Penelitian ini merupakan studi literatur dengan metode literature review,

pencarian artikel menggunakan 4 elektronic based yaitu berupa google scholar,

pubmed, researchgate dan portal garuda, dengan kata kunci Bereavement life

review, keluarga, kesejahateraan spiritual. Kriteria artikel yaitu artikel dengan

intervensi Bereavement life review, original artikel, full paper, dipublikasikan dari

2010-2020

Hasil: Dari 10 artikel, kelompok intervensi yang diberikan Bereavement life

review efektif menaikan kesejahteraan spiritual kelaurga

Kesimpulan: Hasil penelitian lieteratur review yang telah dilakukan tentang

bereavement life review dan kesejahteraan spiritual dapat diperoleh kesimpulan

bahwa pemberian bereavement life review pada keluarga pasien dapat

meningkatkan kesejahteraan spiritual pada keluarga pasien. Hal ini dikarenakan

bereavement life review mampu mereflesikan dan mengatasi perasaan negative

pada keluarga pasien dengan mengubah perasaan negatif tersebut menjadi hal -

hal yang positif, sehingga keluarga pasien dapat menerima kondisi atau kejadian

berduka yang menimpa anggota keluarganya.

Kata Kunci: Bereavement life review, keluarga, kesejahateraan spiritual

1

BAB I

PENDAHULUAN

1.1 Latar Belakang

Pada saat ini berkembangnya keperawatan paliatif modern yang

sudah sangat pesat di dukung dengan bertambahnya kasus penyakit

terminal dengan kebutuhan perawatan end-of-life. Di arahkannya

perawatan yang terfokus kepada keluarga ialah keperawatan paliatif.

Karena elemen penting dalam proses perawatan kepada pasien adalah

keluarga, yang dimana pasien tersebut dalam keadaan terminal untuk

menuju proses kematian yang damai.(1) Selain kanker dan stroke,

penyakit paru obstruktif kronis, penyakit degeneratif, gagal jantung

(heart failure), cystic fibrosis, parkinson, penyakit infeksi seperti

hiv/aids dan penyakit genetika merupakan dalam keadaan terminal.(2)

Keadaan Terminal adalah suatu keadaan sakit dimana menurut

akal sehat tidak ada harapan lagi bagi si sakit untuk sembuh. Keadaan

sakit itu dapat disebabkan oleh suatu penyakit atau suatu kecelakaan.

Kondisi terminal adalah suatu proses yang progresif menuju kematian

berjalan melalui suatu tahapan proses penurunan fisik, psikososial dan

spiritual bagi individu.(2) Penyakit Terminal yang di mana Penyakit pada

stadium lanjut, penyakit utama tidak dapat diobati, pengobatan hanya

bersifat paliatif.(3)

Penyakit ini sering terjadi mendadak dan tidak dapat diprediksi.

Hal itu dapat memberikan dampak yang berat untuk keluarga, terutama

pasangan hidupnya(4). Contohnya Seperti dalam penelitian wilz &

kalytta(5) yang dilakukan pada 114 pasangan pasien yang mengalami

stroke persentasi kejadian kecemasan keluarga 27,6%-28,9%.

Munculnya post traumatic distress syndrome (PTSD) dan penyakit

kardiovaskular akibat kecemasan berlebihan adalah permasalahan yang

lebih serius akibat dari tidak dicegahnya hal itu.(5)

Salah satu faktor dari banyaknya penyebab timbulnya distress

spiritual terhadap keluarga dan pasien merupakan kecemasan(6), distress

2

spiritual merupakan adanya gangguan pada keyakinan maupun sistem

nilai seperti kesulitan merasakan makna akan tujuan hidup yang melalui

hubungan diri sendiri, orang lain, lingkungan hidup maupun tuhan.

Faktor penyebab lainnya Selain kecemasan ialah kondisi penyakit

kronis, berubahnya pola hidup, mengasingkan diri, adanya gangguan

sosio-kultural, menejelang ajal, kejadian dikehidupan yang tidak di

harapkan, anti sosial atau tidak ada kemaun bergaul, kesepian, terjadinya

kematian pada orang terdekat, dan meningkatnya ketergantungan pada

orang lain.(7) keluarga pasien dengan penyakit kronis dapat memberikan

dampak buruk yang di akibatkan oleh Distress spiritual. Kualitas hidup

pasien dengan penyakit kronis juga dapat terpengaruh apabila dukungan

dari keluarga yang menurun akibat dari Distress spiritual.(8)

Dukungan spiritual adalah masalah keperawatan mandiri dan

dapat diselesaikannya apabila menggunakan intervensi mandiri(9).

Dukungan spiritual tidak dibatasi hanya dalam praktik keagamaan saja

seperti membaca kitab suci ataupun berdoa, akan tetapi dukungan

spiritual juga beracuan untuk menghormati privasi, menenangkan,

mendengarkan, dan menghibur, serta membantu mencari makna dari

tujuan hidup pada keluarga. Salah satu faktor yang mempengaruhi

masalah spiritual adalah depresi (10).

Dilakukannya perencanaan dalam meningkatkan spiritual pada

keluarga pasien merupakan hal yang perlu dikembangkan lebih jauh.

Bereavement life review merupakan sebuah bentuk intervensi yang lebih

baik dalam usaha untuk meningkatkannya kesejahteraan spiritual. Di

dalam beberapa penelitian menyebutkan bahwa bereavement life review

jauh lebih baik dalam memacu proses berduka yang efektif. Seperti

dalam penelitian (ando m, et. all)(11) menyebutkan bahwa bereavement

life review jangka pendek lebih efektif meningkatkan kesejahteraan

spiritual pasien yang mempunyai penyakit terminal, dan dapat

menurunkan distress psikososial serta dapat menghantarkan ke kematian

yang sejahtera.(11)

3

Bereavement life review adalah perencanaan keperawatan mandiri

yang berproses dengan mencari dan menemukan makna hidup individu

sehingga spiritualitas pasien ataupun keluarga dapat meningkat.

Bereavement life review juga adalah perencanaan yang mudah, cepat,

dapat dilakukan oleh perawat yang terlatih, serta bisa mencakup dimensi

religiusitas maupun eksistensional dalam spiritual.(12)

Spiritualitas yang sudah dijabarkan diatas adalah gambaran akan

kebutuhan dari makna hidup, apakah itu berasal dari penciptanya atau

dari upaya individu itu sendiri yang dicerminkan sebagai suatu

kesejahteraan eksistensialisme. Dibutuhkannya Pencarian makna ini

perlu dilakukannya intervensi dan upaya bantuan dari perawat atau

tenaga kesehatan yang lain. Bereavement life review memberikan

gambaran akan pencapaian terhadap diri sendiri dan upaya

menemukannya keterkaitan diri sehingga dari sinilah terbentuknya

koping individu yang bagus dalam menghadapi masalah.(13)

Peningkatan spiritual sebagai pengartian diri terlihat saat setelah

proses refleksi. Proses refleksi juga ditambahkan dengan album

kehidupan untuk peningkatan aspek religiusitas. Peningkatan tersebut

dapat dilakukan dengan menambahkan gambar-gambar dan simbol

agama, seperti simbol agama Islam yaitu; gambar Masjid, gambar orang

saat beribadah dan lain sebagainya. Aspek religiusitas dalam

bereavement life review juga muncul akibat proses intropeksi diri yang

terjadi dari diri individu, ketika manusia intropeksi diri, kesehatan

mental agama akan meningkat seiring individu memandang apa yang

telah dia lakukan dan apa yang akan dia berikan.(14)

Life review yang di kembangkan merupakan Bereavement life

review dan dikhususkan digunakan untuk keluarga yang mengalami

proses berduka. Hal yang ditambahkan dalam bereavement life review

adalah adanya penggambaran autobiografi menggunakan album

kehidupan. Penggambaran tersebut yang nantinya mampu menjadikan

keluarga lebih bisa melihat nilai dari kehidupannya. Kesehatan mental

4

keluarga dan meningkatnya kualitas perawatan kepada pasien dapat

terjdi apabila keluarga sudah bisa melihat dan menemukan nilai dari

kehidupan.(11)

Pemaparan bereavement life review belum terlihat apakah

intervensi tersebut dapat lebih baik dalam mencegah proses berduka

yang tidak baik. Penelitian (ando m, et. all) hanya melihat efek

bereavement life review setelah keluarga melalui proses berduka.

Berduka yang tidak baik bisa ditimbulkan akibat persiapan berduka

yang kurang baik (10). Persiapan yang baik merupakan persiapan pada

keluarga yang akan mengalami proses berduka yang di akibatkan

kematian yang disebabkan oleh penyakit kronis (4). Persiapan yang baik

dapat dilakukan dengan cara perencanaan keperawatan, salah satunya

menggunakan bereavement life review.(4)

Bereavement life review dapat memberikan fasilitas kepada

individu dalam pencarian makna dari kehidupan. Pertanyaan terurut

yang dibentuk juga membimbing ke pencarian makna dari kehidupan

individu tersebut. Apabila makna itu telah didapatkan maka spiritual

individu bisa dan dapat meningkat sehingga Bereavement life review

dapat meningkatkan spiritual individu. Proses Bereavement life review

melalui proses memaafkan diri, rekontekstualisasi, dan penggambaran.

Ketiga proses ini akan dilewati individu yang mendapatkan bereavement

life review. (14)

Melihat data dan fakta di atas peneliti ingin melihat efektifitas

pengaruh bereavement life review terhadap kesejahteraan spiritual

keluarga pasien Dengan Penyakit Terminal. Tujuan penelitian study

literatur ini adalah untuk mengetahui pengaruh Bereavement life review

terhadap kesejahteraan spiritual keluarga pasien Dengan Penyakit

Terminal di rsud raden mataher jambi

5

1.2 Rumusan Masalah

Dengan berkembangnya keperawatan paliatif modern yang sudah

sangat pesat di dukung dengan bertambahnya kasus penyakit terminal

dengan kebutuhan perawatan end-of-life. Di arahkannya perawatan yang

terfokus kepada keluarga ialah keperawatan paliatif. Karena elemen

penting dalam proses perawatan kepada pasien adalah keluarga, yang

dimana pasien tersebut dalam keadaan terminal untuk menuju proses

kematian yang damai.(1) Permasalahan utama dalam perawatan paliatif

Selain kanker dan stroke, penyakit paru obstruktif kronis, penyakit

degeneratif, gagal jantung (heart failure), cystic fibrosis, parkinson,

penyakit infeksi seperti hiv/aids dan penyakit genetika.(2)

1.3 Tujuan Penelitian

1.3.1 Tujuan Umum

Mengetahui keefektivitasan bereavement life review sebagai terapi

psikologis dalam peningkatan kesejahteraan spiritual keluarga pasien.

1.3.2 Tujuan Khusus

Mengetahui pengaruh positif terhadap kesejahteraan spiritual

keluarga pasien.

1.4 Manfaat Penelitian

1.4.1 Manfaat Bagi Penulis

Meningkatkan pengetahuan dan pengalaman dalam membuat karya

tulis ilmiah yang bermanfaat dibidang keperawatan.

1.4.2 Mafaat Bagi Profesi Perawat

Hasil penelitian ini diharapkan menjadi bahan evaluasi bagi profesi

perawat dalam berkomunikasi sehingga menjadi profesi perawat yang

profesional.

6

1.4.3 Manfaat Bagi Rumah Sakit

Hasil penelitian ini diharapkan menjadi bahan pertimbangan untuk

meningkatkan mutu dan kualitas pelayanan rumah sakit yang lebih baik

lagi.

1.4.4 Manfaat Bagi Institusi Pendidikan

Hasil penelitian ini diharapkan dapat dijadikan sebagai bahan

pembelajaran dan sebagai bahan pertimbangan untuk penelitia

selanjutnya.

7

BAB II

TINJAUAN PUSTAKA

2.1 Keperawatan paliatif

2.1.1 Definisi

Perawatan paliatif merupakan perawatan merata yang dicoba secara

aktif spesialnya kepada penderita yang mengidap penyakit yang

menghalangi hidup, serta keluarga penderita, yang dicoba oleh regu secara

interdisiplin, dimana penyakit penderita tersebut telah tidak bisa lagi

mempengaruhi terhadap pengobatan maupun penderita yang memperoleh

perencanaan buat perpanjangan masa hidup.(15)

Perawatan hospis terkadang digunakan sebagai persamaan buat

perawatan paliatif. Terselip, di sebagian negeri perawatan hospis dirujuk

pada perawatan paliatif berbasis komunitas. Secara filosopi perawatan

hospis serta perawatan paliatif memiliki artian yang sama. Walaupun

demikian,“ seluruh perawatan hospis merupakan perawatan paliaitf,

namun tidak seluruh perawatan paliatif merupakan perawatan hospis.”

Perawatan paliaitf di siapkan buat penderita yang memiliki penyakit kronis

dengan keadaan yang menghalangi masa hidup ataupun mengecam jiwa

atupun keadaan penderita yang memperoleh perencanaan buat

perpanjangan masa hidup. Ada pula perawatan hospis di khususkan

kepada penderita dengan keadaan harapan hidup yang telah di perkirakan

kurang dari 6 bulan.(15)

2.1.2 Tujuan Perawatan Paliatif

Perawatan palliatif memiliki tujuan ialah untuk kurangi penderitaan

yang dirasakn oleh penderita, serta bisa memperpanjang usianya, dapat

tingkatkan mutu hidupnya, serta pula membagikan semangat kepada

keluarganya. Meski pada kesimpulannya penderita akan wafat, akan tetapi

yang terutama saat sebelum wafat ia telah siap secara psikologis serta

spiritual, sehingga penderita tidak banyak pikiran mengalami penyakit

8

yang dideritanya.(16)

Perawatan paliatif meliputi :

1. Menyiapkan atau disediakannya bantuan dari rasa sakit dan

gejala yang menyebabkan kesedihan lainnya

2. Menegaskan hidup dan memepercepat atau menunda kematian.

3. Menggabungkan aspek-aspek psikologis dan spiritual

perawatan pasien

4. Tidak mempercepat atau memperlambat kematian

5. Meredakan nyeri dan gejala fisik lain yang mengganggu

6. Menawarkan dukungan untuk membantu keluarga menghadapi

penyakit pasien dan kehilangan mereka.

2.1.3 Prinsip Perawatan Paliatif

Prinsipnya ialah menghormati ataupun menghargai martabat serta

harga diri dari penderita serta keluarga penderita, support buat caregiver,

palliatif care ialah akses yang penyayang, dikembangkannya professional

serta social support buat pediatric palliatif care, meneruskan serta

meningkatkan pediatrik palliative care lewat riset serta pembelajaran.(16)

Perawatan paliatif berpaku pada pola dasar berikut ini :

1. Peingkatan kualitas hidup dan menganggap kematian sebagai

proses yang normal

2. Tidak mempercepat atau menunda kematian.

3. Menghilangkan nyeri dan keluhan lain yang menganggu.

4. Menjaga psikologis, sosial dan spiritual agar tetap seimbang

5. Berusaha agar penderita tetap aktif sampai akhir hayatnya

6. Berusaha membantu mengatasi suasana dukacita pada

keluarga.

7. Menggunakan pendekatan tim untuk mengatasi kebutuhan

pasien dan keluarganya

9

2.1.4 Perkembangan Perawatan Paliatif

1. Masa lalu

Sekitar tahun 1960-an gerakan hospis berkembang secara murni,

dan pada saat itu era pelayanan hospis modern dimulai. Seseorang yang

mengemukakan gerakan perubahan tersebut adalah Dame Cicely

Saunders (yang mana lebih dikenal dengan panggilan Dame). Dame

menciptakan tentang konsep caring, khususnya untuk pasien yang di

tahap stadium akhir dan menjelang ajal atau kematian. Konsep tersebut

adalah suatu cara pandangan atau sudut pandang untuk melihat suatu

fakta secara holistic, termasuk pasien. Sehingga perawat tidak hanya

melihat pasien sebagai individu yang memiliki masalah fisik saja, tetapi

juga melihat pasien sebagai mahluk yang kompleks. Dame juga

mempercayai bahwa gejala fisik yang di alami oleh pasien juga dapat

mempengaruhi emotional, psikologis, spiritual pasien dan social,

maupun sebaliknya.(1)

Sejak pertama di saat Dame mengemukakan dan membangun

rumah hospis, Dame telah menyatukan pendidikan dan penelitian

dalam pelayanan di rumah hospis. Di kota london merukapan Rumah

hospis pertama yang di dirikan oleh Dame pada tahun 1967. Sejalan

dengan berkembangnya gerakan rumah hospis, pelayanan perawatan

paliatif mulai mengkhususkan pada aspek “Care” bukan pada aspek

“Cure” atau pengobatan. Sehingga prioritas perencanaan pada saat itu

yang dilakukan merupakan bagaimana keluhan yang ada pada psien

dapat di kontrol oleh pasien sendiri, seperti nyeri. Tahun 1982, mulai

diperkenalkannya dokter spesialis paliatif secara formal. Dokter

pada saat itu tidak hanya memberikan pelayanan untuk pasien yang

membutuhkan perawatan paliatif, dokter itupun juga melakukan

penelitian mengenai praktik klinik pada pasien yang diberikan

perawatan paliatif, dan melakukan pengajaran ataupun pendidikan

berkelanjutan dalam sudut pandang berbagai ilmu pengetahuan.

Meskipun konsep hospis modern dan perawatan paliatif adalah hal yang

10

baru, namun pelayanan perawatan paliatif yang diberikan bisa

memberikan perubahan yang sangat berarti terhadap peningkatan

kualitas hidup pasien, untuk menyiapkan pasien pada tahap meninggal

dengan damai dan bermartabat, dan juga memberikan dukungan pada

anggota keluarga yang di tinggalkan oleh pasien.(1)

Sejak pertama bergeraknya hospis modern dimana pada saat itu

yang diberikan pelayanan hanya terfokus pada pasien yang menderita

peyakit kanker. Namun beberapa orang pekerjanya mengembangkan

pelayanan pada pasien yang mempunyai penyakit tahap selanjutnya

seperti motor neuron disease, penyakit paru obstruksi menahun,gagal

jantung kongestif, gagal ginjal kronis, stroke, dan lainnya.(1)

Pada awal abad 20, kebanyakan pasien yang mendapat perawatan

dari pihak keluarga meninggal di rumah. Namun keadaan tersebut

berubah dengan sejalan berkembangnya dunia kedokteran dan

kesehatan, dan beberapa metode baru diterapkan dalam pengobatan yang

mewajibkan proses perawatan pasien harus berpindah ke rumah sakit.

Dampak dari hal itu, angka kematian pasien yang meninggal di rumah

menurun drastis. Akan tetapi, kebanyakan pasien kanker akan

menghabiskan sisa hidupnya lebih banyak di rumah. Hal ini berdasarkan

hasil penelitian yang menunjukkan bahwa sekitar 90% pihak keluarga

yang memberikan perawatan pada pasien kanker di rumah.(1)

2. Masa sekarang dan yang akan datang

Di Negara Inggris dalam menyediakan perawatan paliatif telah

terjadi perubahan yang dinamis. Yang dimana depertemen kesehatan

sudah memperkenalkan panduan dan program baru yang di berinama

dengan sebutan “the Gold Standards Framework” dan “End of Life Care

Strategy”. Panduan dan program tersebut mempusatkan untuk

pentingnya penggunaan standard pelayanan pada saat diberikannya

pelayanan perawatan paliatif pada pasien dan keluarga khususnya pada

saat kondisi pasien menjelang ajal ataupun kematian. Pada selanjutnya,

11

pasien diharuskan untuk mandiri pada saat akan memilih tempat selama

menjalani proses perawatan, seperti rumah sakit, rumah perawatan,

rumah hospis, atau rumah sendiri. Sebagai tugas perawatan paliatif,

memaksimalkan sisa waktu atau umur pasien selama dalam perawatan

adalah hal yang penting. Untuk memaksimalkan hal tersebut,

koordinasikan dengan anggota tim, dan hal yang sangat dibutuhkan

adalah memberikan pelayanan yang berkualitas.(1)

Panduan atau tatacara baru yang diterbitkan saat ini oleh lembaga

denagn reputasi yang baik sudah menjelaskan bagaimana cara yang

mempunyai kualitas yang baik pada saat pemberian pelayanan

perawatan paliatif secara umum maupun secara kelompok pasien dengan

penyakit tertentu seperti panduan atau tatacara perawatan paliatif untuk

pasien kanker. Di dalam panduan tersebut, telah dijelaskan secara

terperinci mengenai peran masing-masing anggota tim interprofesional,

komunikasi yang lebih baik pada pasien, keluarga dan sesama anggota

tim.(1)

Secara global, telah dilaporkannya oleh WHO bahwa pendidikan

dan pengetahuan para petugas kesehatan masih sangat sedikit mengenai

perawatan pasien di area paliatif. Perkiraan WHO terhadap perawatan

paliataif adalah sekitar 19 juta orang di dunia saat ini membutuhkan,

yang dimana persentasi sebanyak 69% dari mereka adalah pasien

dengan usia lanjut yaitu usia diatas 65 tahun. Dengan demikian hal ini

menjadi tantangan bagi para petugas kesehatan terutama tenaga

kesehatan professional yang bertugas di area paliatif untuk dapat

memahami dengan lebih baik cara memberikan pelayanan yang

berkualitas pada kelompok lanjut usia dengan mengacu pada filosopi

dan standart pelayanan perawatan paliatif.(1)

12

2.2 Penyakit Terminal

2.2.1 Definisi

Keadaan Terminal adalah suatu keadaan sakit dimana menurut akal

sehat tidak ada harapan lagi bagi si sakit untuk sembuh. Keadaan sakit itu

dapat disebabkan oleh suatu penyakit atau suatu kecelakaan. Kondisi

terminal adalah suatu proses yang progresif menuju kematian berjalan

melalui suatu tahapan proses penurunan fisik, psikososial dan spiritual

bagi individu.(2) Penyakit yang tidak dapat disembuhkan dan tidak ada

obatnya, kematian tidak dapat dihindari dalam waktu yang bervariasi.

Penyakit pada stadium lanjut, penyakit utama tidak dapat diobati, bersifat

progresif, pengobatan hanya bersifat paliatif ( mengurangi gejala dan

keluhan, memperbaiki kualitas hidup).(3)

2.2.2 Kriteria Penyakit Terminal

Kriteria Penyakit Terminal (3)

1. Penyakit tidak dapat disembuhkan

2. Mengarah pada kematian

3. Diagnosa medis sudah jelas

4. Tidak ada obat untuk menyembuhkan

5. Prognosis jelek

6. Bersifat progresif

2.2.3 Jenis Penyakit Terminal

Beberapa jenis penyakit terminal(3)

1. Penyakit-penyakit kanker.

2. Penyakit-penyakit infeksi.

3. Congestif Renal Falure (CRF).

4. Stroke Multiple Sklerosis.

5. Akibat kecelakaan fatal.

6. AIDS

13

2.2.4 Manifestasi Klinis Fisik

1. Gerakan pengindaran menghilang secara berangsur-angsur

dimulai dari ujung kaki dan ujung jari

2. Aktivitas dari GI berkurang.

3. Reflek mulai menghilang.

4. Suhu klien biasanya tinggi tapi merasa dingin dan lembab

terutama pada kaki dan tangan dan ujung ujung ektremitas.

5. Kulit kelihatan kebiruan dan pucat.

6. Denyut nadi tidak teratur dan lemah.

7. Nafas berbunyi, keras dan cepat ngorok.

8. Penglihatan mulai kabur.

9. Klien kadang-kadang kelihatan rasa nyeri.

10. Klien dapat tidak sadarkan diri.(3)

14

2.3 Keluarga

2.3.1 Definisi

Keluarga adalah kumpulan dua orang atau lebih yang hidup

bersama dengan keterikatan aturan dan emosional dan individu

mempunyai peran masingmasing yang merupakan bagian dari

keluarga(15). Pakar konseling keluarga adalah suatu ikatan/persekutuan

hidup atas dasar perkawinan antara orang dewasa yang berlainan jenis

yang hidup bersama atau seorang laki-laki atau seorang perempuan yang

sudah sendirian dengan atau tanpa anak, baik anaknya sendiri atau

adopsi, dan tinggal dalam sebuah rumah tangga.(16)

2.3.2 Tipe Keluarga

1. Nuclear family (keluarga inti) adalah keluarga yang hanya terdiri ayah,

ibu, dan anak yang masi menjadi tanggungannya dan tinggal satu

rumah, terpisah dari sanak keluarga lainnya.

2. Extended family ( keluarga besar) adalah satu keluarga yang terdiri

dari satu atau dua keluarga inti yang tinggal dalam satu rumah dan

saling satu sama lain.

3. Singgle parent family adalah satu keluarga yang dikepalai satu kepala

keluarga dan hidup bersama dengan anak-anak yang masih bergantung

kepadanya.

4. Nuclear dyed adalah keluarga yang terdiri dari pasngan suami-istri

tanpa anak, tinggal dalam satu rumah yang sama.

5. Blended family adalah keluarga yang terbentuk dari perkawinan

pasangan, yang masing-masing pernah menikah dan membawa anak

hasil perkawinan yang terdahulu.

6. Three generation family adalah yang terdiri dari tiga generasi yaitu

kakek, nenek, bapak, ibu, dan anak dalam satu rumah.

7. Single adult living alone adalah bentuk keluarga yang hanya terdiri

dari satu orang dewasa yang hidup dalam rumahnya.

15

8. Middle age atau elderly couple adalah keluarga yang terdiri dari

sepasang suami-istri paruh baya.(17)

2.3.3 Struktur Keluarga

Ada empat element struktur keluarga yaitu:

1. Struktur peran keluarga, menggambarkan peran masing-masing

anggota keluarga dalam keluarga sendiri dan perannya

dilingkungan masyarakat atau peran formal dan informal.

2. Nilai atau norma keluarga, menggambarkan nilai dan norma yang

dipelajari dan diyakini oleh keluarga, khususnya yang

berhubungan dengan kesehatan.

3. Pola komunikasi keluarga, menggambarkan bagaimana cara dan

pola komunikasi ayah-ibu (orang tua), orang tua dengan anak,

anak dengan anak, dan anggota keluarga lain (pada keluarga

besar) dengan keluarga inti.

4. Struktur kekuatan keluarga, menggambarkan kemampuan

anggota keluarga untuk mempengaruhi dan mengendalikan orang

lain untuk mengubah perilaku keluarga yang mendukung

kesehatan.(17)

2.3.4 Peran Keluarga

Peran Keluarga Peran adalah seperangkat perilaku interpersonal, sifat,

dan kegiatan yang berhubungan dengan individu dalam posisi dan satuan

tertentu. Setiap anggota keluarga mempunyai peran masing-masing.

1. Peran Ayah : Pemimpin keluarga, pencari nafkah, sebagai pendidik,

Pelindung/pengayom, pemberi rasa aman kepada anggota keluarga,

selain itu, sebagai anggota masyarakat/kelompok sosial tertentu.

2. Peran Ibu : Pengurus rumah tangga, sebagai pengasuh, sebagai

pendidik anakanak, sebagai pelindung keluarga, sebagai pencari

nafkah tambahan keluarga, dan sebagai anggota masyarakat.

3. Peran Anak : Sebagai pelaku psikososial sesuai dengan

perkembangan fisik, mental, sosial, dan spiritual.

16

2.3.5 Fungsi keluarga

Fungsi Keluarga Secara fungsi keluarga adalah sebagai berikut :

1. Funfsi afektif (the affective function) adalah fungsi keluarga yang

utama untuk mengajarkan segala sesuatu untuk mempersiapkan

anggota keluarga berhubungan dengan orang lain.

2. Fungsi sosialisasi dan tempat bersosialisasi (Sosialization and

social placement) adalah fungsi mengembangkan dan tempat

melatih anak untuk berkehidupan social sebelum meninggalkan

rumah untik berhubungan dengan orang lain diluar rumah.

3. Fungsi reproduksi (the reproductive function) adalah fungsi untuk

mempertahankan generasi dan menjaga kelangsungan keluarga.

4. Fungsi reproduksi (the economic function), yaitu keluarga

berfungsi untuk memenuhi kebutuhan keluarga secara ekonomi

dan tempat untuk mengembangkan kemampuan individu

penghasilan untuk memenuhi kebutuhan keluarga.

5. Fungsi perawatan/pemeliharaan kesehatan (the health care

function), yaitu mengenal, mengambil keputusan, merawat,

memodifikasi, dan memanfaatkan fasilitas.

17

2.4 Kesejahteraan spiritualitas

2.4.1 Konsep Kesejahteraan Spiritual

Jiwa itu dinamis, subjektif dan emosional. Ketiga hal ini membuat

spiritualitas sulit diukur dalam diri individu. Semangat dinamis

memungkinkan semangat berubah setiap saat. Semangat bersifat subjektif,

yang menunjukkan bahwa keefektifan alat ukur untuk setiap orang akan

berbeda-beda. Spiritualitas saat ini diukur dengan metode yang disebut

kesejahteraan. Kesejahteraan spiritual dapat didefinisikan sebagai ekspresi

dari kesehatan mental seseorang, yang didasarkan pada kesejahteraan

religius dan kesejahteraan dari proses kelangsungan hidup individu.

Kesehatan mental juga menunjukkan kualitas hidup individu pada tingkat

spiritual, atau, dalam arti luas, indikator kesehatan mental mereka.(18)

2.4.2 Alat Ukur Kesejahteraan Spiritual

Pengembangan pelatihan kesejahteraan ini disebut dengan Skala

Kesehatan Mental (SWBS). SWBS adalah contoh nyata dari agama dan

kelangsungan hidup pribadi. SWBS telah dikembangkan dalam berbagai

bahasa, termasuk Indonesia, Malaysia, Spanyol, Portugis, Cina dan Arab.

Setiap negara telah menguji keefektifan SWBS. Hasil penelitian

menemukan bahwa tiga bahasa yang diverifikasi oleh terjemahan SWBS

adalah bahasa Arab, Inggris dan Malaysia, dengan nilai r> 0,80.(19)

Alat ukur lain untuk mengukur kesehatan mental adalah Evaluation of

Chronic Disease Therapeutic Function-Mental Health Scale (FACIT-Sp).

FACIT-Sp digunakan untuk orang yang sakit parah. Sampel dalam

penelitian ini adalah keluarga pasien yang sakit parah, sehingga tidak

sesuai untuk populasi ini. FACIT-Sp juga merupakan ringkasan dari

SWBS. Indeks Kesehatan Mental (SIWB) juga merupakan alat ukur untuk

mengukur kesehatan jiwa, namun dalam perkembangannya belum ada uji

verifikasi untuk populasi lain, hanya untuk penduduk Amerika. Dalam

konteks penelitian ini diperlukan suatu alat ukur yang dapat digunakan

dalam aspek kulture dan budaya Indones.(20)

18

2.4.3 Bereavement Life Review dalam Peningkatan Spiritualitas

Spiritualitas ini menggambarkan akan kebutuhan akan makna dari

hidup, apakah itu dari penciptanya ataupun upaya individu yang

digambarkan sebagai suatu kesejahteraan eksistensional. Adanya

intervensi dan upaya bantuan dari perawat atau tenaga kesehatan yang lain

dalam pencarian makna ini. Bereavement life review menguraikan

pencapaian diri dan upaya menemukan integritas diri guna

mengembangkan keterampilan koping pribadi yang baik saat menghadapi

masalah..(13)

Tinjauan tentang bereavement life review membantu individu

menemukan makna dalam hidup. Masalah struktural yang dihasilkan juga

mengarah pada pencarian makna individu. Setelah mendapatkan makna

tersebut maka spiritualitas individu akan meningkat, sehingga life review

dari duka tersebut dapat meningkatkan spiritualitas individu tersebut.

Proses bereavement life review adalah proses re-konteks, memaafkan diri

sendiri dan refleksi. Individu yang menjalani penilaian kehidupan

rekondisi akan melalui tiga proses ini. Setelah proses refleksi, seseorang

dapat melihat peningkatan spiritual sebagai makna diri dalam hal

kelangsungan hidup dan agama. Album foto kehidupan juga ditambahkan

selama proses refleksi untuk meningkatkan religius. Peningkatan ini dapat

dicapai dengan menambahkan gambar dan simbol keagamaan (seperti

simbol Islam misalnya). Gambar masjid, gambar orang saat beribadah, dll.

Proses jihad diri dalam kehidupan individu juga menghasilkan aspek

religius dalam kehidupan beragama. Ketika manusia melakukan jihad

maka kesehatan mental agama akan meningkat sesuai dengan pandangan

pribadinya, karena menurutnya apa yang telah dilakukannya dan apa yang

akan diberikannya.(14)

19

2.5 Bereavement life review

2.5.1 Definisi

Bereavement life review merupakan perkembangan dari life review,

khusus untuk keluarga yang mengalami proses duka. Yang ditambahkan

pada review kehidupan adalah visualisasi otobiografi menggunakan album

foto kehidupan. Diharapkan dengan adanya visualisasi seperti ini, keluarga

lebih mampu melihat kehidupannya sendiri. Kehidupan yang berharga

dapat meningkatkan kesehatan mental keluarga dan meningkatkan kualitas

perawatan pasien(11)

Kemajuan bereavement life review belum terlihat bagaimana

intervensi ini dapat secara efektif mencegah proses kesedihan yang tidak

efektif. Studi (ando m, morita t, dkk)(11) hanya meneliti dampak dari

perubahan kehidupan keluarga setelah mengalami proses yang

menyakitkan. Persiapan yang tidak memadai untuk kesedihan dapat

menyebabkan kesedihan yang mendalam (10). Persiapan adalah untuk

mempersiapkan keluarga yang telah melalui proses kesedihan akibat

meninggal dunia akibat stroke(4). Ini dapat dipersiapkan secara memadai

melalui intervensi keperawatan, salah satunya adalah penggunaan

bereavement life review(4).

Bereavement life review merupakan intervensi keperawatan mandiri

yang prosesnya mencari dan menggali makna kehidupan pribadi yang

dapat meningkatkan spiritualitas pasien atau anggota keluarga.

Bereavement life review juga merupakan intervensi yang mudah dan cepat

yang dapat dilakukan oleh perawat yang terlatih dengan baik, dan dapat

mencakup tingkat religius dan eksistensial pada tingkat spiritual(14).

2.5.2 Tahap Proses Berduka

1. Tahapan berduka menurut Kubler-Ross menetapkan lima

tahapan berduka, yaitu :(21)

20

a. Penyangkalan adalah syok dan ketidak percayaan akan

kehilangan.

b. Kemarahan dapat diungkapkan kepada Tuhan, keluarga,

teman atau penyedia layanan kesehatan.

c. Tawar-menawar terjadi ketika individu menawar untuk

mendapat lebih banyak waktu dalam upaya memperpanjang

kehilangan yang tidak dapat dihindari.

d. Depresi akan terjadi ketika rasa kehilangan menjadi akut.

e. Penerimaan terjadi ketika individu memperlihatkan

tandatanda bahwa ia menerima kematian.(21)

2. Teori Bowlby Pemahaman Bowlby tentang berduka dia

mendeskripsikan proses berduka akibat suatu kehilangan

memiliki empat fase :(21)

a. Mati rasa dan penyangkalan terhadap kehilangan.

b. Kerinduan emosional akibat kehilangan orang yang dicintai

dan memprotes kehilangan yang tetap ada.

c. Kekacauan kognitif dan keputusasaan emosional,

mendapatkan dirinya sulit melakukan fungsi dalam

kehidupan sehari-hari.

d. Reorganisasi dan reintegrasi kesadaran diri sehingga dapat

mengembalikan hidupnya.(21)

3. Teori John Harvey pada tahun 1998 John Harvey menetapkan 3

tahap berduka, yaitu :(21)

a. Syok, menangis dengan keras, dan menyangkal.

b. Instruksi pikiran, distraksi dan meninjau kembali kehilangan

secara obsesif.

c. Menceritakan kepada orang lain sebagai cara meluapkan

emosi dan secara kognitif menyusun kembali peristiwa

kehilangan.(21)

21

4. Teori Rodebaugh et al. Pada tahun 1999 Proses dukacita sebagai

suatu proses yang melalui empat tahap, yaitu :(21)

a. Reeling : klien mengalami syok, tidak percaya, atau

menyangkal.

b. Merasa (feeling) : klien mengekspresikan penderitaan yang

berat, rasa bersalah, kesedihan yang mendalam, kemarahan,

kurang konsentrasi, gangguan tidur, perubahan nafsu makan,

kelelahan, dan ketidaknyamanan fisik yang umum.

c. Menghadapi (dealing) : klien mulai beradaptasi terhadap

kehilangan dengan melibatkan diri dalam kelompok

pendukung, terapi dukacita, membaca dan bimbingan

spiritual.

d. Pemulihan (healing) : klien mengintegrasikan kehilangan

sebagai bagian kehidupan dan penderitaan yang akut

berkurang. Pemulihan tidak berarti bahwa kehilangan

tersebut dilupakan atau diterima.(21)

Tabel 2.1. Pemahaman Teoritis proses berduka

Ahli

Fase I

Fase

II

Fase III Fase IV

teori/klinisi

Kubler-Ross Tahap I : Tahap II : Tahap IV : Tahap V :

(1969) Penyangkalan Kemarahan Depresi Penerimaan

Tahap III :

Tawar-menawar

Bowlby Mati Rasa ; Kerinduan Disorganisasi Reorganisasi

(1980) Penyangkalan emosional kognitif; kognitif;

terhadap Orang keputusan reintegrasi

yang dicintai; emosional; kesadaran diri

memprotes sulit

kehilangan Yang melakukan

tetap ada fungsi

Harvey Syok; Instruksi pikiran, Menceritakan

(1998) Menangis distraksi; kepada orang

dengan keras; meninjau lain untuk

Menyangkal kehilangan meluapkan

secara obsesif emosi dan

22

secara kognitif

menyusun

kembali

peristiwa

kehilangan

Rodebaugh et

Reeling syok, Merasa (feeling) Menghadapi Pemulihan

al. (1999) tidak percaya, : Penderitaan (dealing) : (healing) :

atau yang berat, Rasa beradaptasi integrasi

Menyangkal bersalah, terhadap kehilangan;

kesedihan, kehilangan penderitaan

2.5.3 Jenis Berduka

1. Kesedihan normal, termasuk perasaan, perilaku, dan reaksi normal

terhadap kehilangan (kesedihan, kemarahan, tangisan, kesepian, dan

penarikan diri sementara dari aktivitas).

2. Duka yang diantisipasi, yaitu proses laissez-faire yang terjadi sebelum

kehilangan atau kematian yang sebenarnya terjadi. Misalnya saat

menerima diagnosa akhir, seseorang akan memulai proses perpisahan

dan menyelesaikan berbagai urusan di dunia sebelum ajal tiba.

3. Duka yang rumit, menghadapi hal-hal yang dialami oleh orang yang

mengalami kesulitan untuk memasuki tahap berikutnya (yaitu tahap

kesedihan yang normal). Masa berkabung tampaknya tidak akan

pernah berakhir, dan dapat mengancam hubungan antara orang-orang

yang terlibat dengan orang lain.

4. Pintu berduka tertutup, yaitu duka cita atas kehilangan yang tidak

dapat diketahui publik (kehilangan pasangan karena AIDS, anak yang

dibunuh oleh orang tua atau ibu yang kehilangan anaknya dalam

kandungan atau saat melahirkan) (21)

2.5.4 Respons Berduka

Respons berduka seseorang terhadap kehilangan dapat melalui tahap-

tahap berikut (21)

23

Tahap marah Tahap depresi

1________________2____________3____________4____________5

Tahap pengingkaran Tahap tawar Tahap

menawar menerima

1. Tahap pengingkaran

“Tidak mungkin, ini tidak mungkin”

Reaksi pertama dari seorang individu yang telah menderita

kehilangan adalah syok, ketidakpercayaan, pemahaman atau

penyangkalan atas fakta bahwa kehilangan itu benar-benar terjadi

(orang yang menerima diagnosis terminal atau keluarga orang

tersebut akan terus mencari informasi lain). Reaksi fisik yang

terjadi pada tahap ini adalah kelelahan, lemas, kulit pucat, mual,

diare, gangguan pernafasan, detak jantung cepat, menangis,

gelisah. Reaksi bisa berlangsung selama beberapa menit atau

beberapa tahun.

Tindakan :

a. Memberi kesempatan pada pasien untuk mengungkapkan

perasaannya dengan cara :

1) Dorong pasien untuk mengungkapkan kesedihannya.

2) Secara bertahap tingkatkan kesabaran pasien tentang

kenyataan dan kehilangan apabila sudah siap secara

emosional.

24

b. Menunjukkan sikap menerima dengan ikhlas dan mendorong

pasien untuk berbagi rasa dengan cara :

1) Mendengarkan dengan penuh perhatian dan minat apa yang

dikatakan oleh pasien tanpa menghukum atau menghakimi.

2) Menjelaskan kepada pasien bahwa sikap tersebut dapat

terjadi pada orang yang mengalami kehilangan.

c. Memberikan jawaban yang jujur terhadap pertanyaan pasien

tentang sakit, pengobatan dan kematian dengan cara ;

1) Menjawab pertanyaan pasien dengan bahasa yang sudah

dimengerti, jelas dan tidak berbelit-belit.

2) Mengamati dengan cermat respon pasien selama berbicara.

3) Meningkatkan kesadaran secara bertahap.

2. Tahap marah

“Kenapa saya? Ini tidak adil, siapa yang harus disalahkan”

Artinya, individu menolak kehilangan. Kemarahan sering terjadi

pada orang lain atau dirinya sendiri. Orang yang mengalami

kehilangan juga seringkali menunjukkan perilaku negatif,

berbicara kasar, menolak pengobatan dan menyalahkan dokter /

bidan yang tidak kompeten. Reaksi fisik yang terjadi; wajah

marah, denyut nadi cepat, gelisah, susah tidur, kepalan tangan, dst.

Tindakan :

Mengizinkan dan mendorong pasien untuk mengungkapkan rasa

marah secara verbal tanpa melawan dengan kemarahan :

a. Menjelaskan kepada keluarga bahwa kemarahan pasien

sebenarnya tidak ditujukan kepada mereka.

b. Menizinkan pasien untuk menangis

c. Mendorong pasien untuk membicarakan rasa marahnya.

25

d. Membantu pasien menguatkan system pendukung dengan

orang lain.

3. Tahap tawar-menawar

“Saya akan lakukan apapun agar dapat bertahan beberapa tahun

lagi”

Ada penundaan dalam menyadari kehilangan, Anda dapat

mencoba mencapai kesepakatan yang halus atau terbuka, seolah-

olah Anda dapat menghindari kehilangan. Individu dapat

melakukan tawar-menawar dengan memohon belas kasihan dari

Tuhan Yang Maha Esa. Membantu pasien dalam mengungkapkan

rasa bersalah dan takut dengan cara;

a. Mendengar ungkapan dengan penuh perhatian

b. Mendorong pasien untuk membicarakan takut atau rasa

bersalahnya.

c. Bila pasien selalu mengungkapkan “ kata…” atau “

seandainya….” Beritahu pasien bahwa bidan hanya dapat

melakukan sesuatu yang nyata.

d. Membahas bersama pasien mengenai penyebab rasa bersalah

atau rasa takutnya.

4. Tahap depresi.

“Apa gunanya lagi? Saya akan meninggal, saya tak peduli

dengan apapun lagi”

Pasien sering menunjukkan sikap menyendiri, terkadang sangat

patuh, tidak mau berbicara, mengungkapkan keputusasaan,

perasaan tidak berharga bahkan pikiran untuk bunuh diri.

26

Gejala fisik :

a. Menolak makan

b. Susah tidur

c. Letih

d. Dorongan libido/ menurun

e. Dan lain-lain

5. Tahap penerimaan

“Semua akan baik-baik saja. Saya tidak dapat melawan ini,

lebih baik saya bersiap diri untuk menghadapinya”

Ini adalah tahap yang terkait dengan pengaturan kembali emosi

yang hilang. Pikiran untuk selalu fokus pada objek yang hilang

akan mulai berkurang atau menghilang. Individu telah menerima

kenyataan kehilangannya dan mulai menantikannya. Bantu pasien

menerima kehilangan yang tak terhindarkan dengan cara:

a. Membantu keluarga mengunjungi pasien secara teratur

b. Membantu keluarga berbagi rasa, karena setiap anggota

keluarga tidak berada pada tahap yang sama pada saat yang

bersamaan.

c. Membahas rencana setelah masa berkabung terlewati

d. Memberi informasi akurat tentang kebutuhan pasien dan

keluarganya.(21)

2.5.5 Tahapan proses bereavement life review

Tahapan atau proses terapi bereavement life review dilakukan dengan

mengenang kejadian - kejadian masa lalu, mengekspresikan perasaan

dengan melepaskan emosi berupa emosi negatif, sehingga keluarga pasien

dapat menggunakan kenangan tersebut untuk menyelesaikan dan

menerima masalah saat ini. Menurut Ando10 menyatakan bahwa

27

bereavement life review berdasarkan pada satu prinsip bahwa dengan

mengenang dan mengevaluasi masa lalu dapat menurunkan depresi.

Melalui terapi ini keluarga diajarkan atau dilatih untuk mengeksplorasi

pengalaman hidup masa lalu dalam bentuk informasi yang lebih positif.(22)

Bereavement life review terdiri dari dua sesi wawancara. Pada sesi

pertama, peserta meninjau hidupnya dengan terapis. Setiap sesi wawancara

berlangsung 30 hingga 60 menit dan interval antara sesi pertama dan

kedua adalah dua minggu. Pertanyaan-pertanyaan berikut adalah

ditanyakan pada sesi bereavement life review: 1) Apa yang menurut Anda

paling terpenting dalam kehidupan Anda, berikan alasannya?, 2) Hal apa

yang menurut Anda yang paling berkesan dari pasien sampai saat ini?, 3)

Sampai saat ini, ketika merawat pasien apa yang paling berkesan menurut

Anda?, 4) Hal apa yang menjadikan diri Anda bangga dalam merawat

pasien sampai saat ini?, 5) Hal apa yang berperan terhadap kehidupan

Anda?, 6) Apa yang Anda banggakan di hidup Anda?. (22)

Hasil wawancara dengan pasien direkam. Sesi pertama dilakukan

selama kurang lebih satu jam, mulai dari pra interaksi sampai terminasi

dalam tahapan komunikasi terapeutik. Setelah wawancara sesi pertama

selesai, terapis mentranskripsi hasil wawancara dan peneliti membuat

suatu mini album, kata kunci dari pertanyaan digambarkan di dalam album

dan diberikan kepada pasien. Sesi kedua dilakukan satu minggu setelah

sesi pertama. Sesi kedua peneliti dan terapis mendampingi keluarga untuk

melihat album yang telah dibuat peneliti. Sesi kedua dilakukan kurang

lebih satu jam. Setiap responden melewati sesi pertama dan kedua

sebanyak satu kali. (22)

Tahap dalam bereavement life review meliputi rekonstektualisasi,

memaafkan terhadap diri individu dan proses refleksi. Ketiga tahap ini

mempunyai karakteristik yang berbeda dalam individu dan merupakan

proses yang dilewati dalam proses bereavement life review.12

Proses rekontekstualisasi terbentuk saat responden dan terapis

melakukan interaksi pada pertemuan pertama. Menurut Ando10, tahap

28

rekonstektualisasi dalam bereavement life review muncul ketika responden

mampu membentuk lingkungan yang membuat responden melupakan

sedikit kesedihannya. Tahap rekontekstualisasi adalah proses penguatan

tahap acceptance dalam tahapan berduka, respon individu dalam

rekontekstualiasi akan lebih cepat ketika individu telah dalam tahap

acceptance.(12)

Tahap kedua adalah memaafkan terhadap diri individu (forgiving).

Proses ini merupakan upaya peningkatan kemampuan koping individu

dalam menghadapi proses berduka dan dapat meningkatkan spiritualitas.

Proses memaafkan ini muncul setelah akhir sesi pertama dan menuju

proses sesi ke dua. Menurut Ando10, tahap setelah pengkondisian

lingkungan adalah mengingat memori yang baik dan mengevaluasi

memori yang buruk. Proses memafkan terhadap diri individu ini muncul

ketika terdapat evaluasi dari memori atau hal yang berkesan dari

responden saat bersama dan merawat pasien. Proses memaafkan terhadap

diri individu ini ditandai dengan peningkatan emosi, menangis dan

merasakan keadaan pasien sebagai hal yang disyukuri tanpa menyalahkan

diri sendiri sebagai keluarga terdekat pasien. Proses ini merupakan upaya

penemuan makna hidup responden sehingga dapat menata hidup lebih baik

dan meningkatkan self relience individu. Tahap memafkan ini

membutuhkan waktu 2–4 hari sebagai upaya peningkatan selfrelience.(12)

Proses selanjutnya adalah refleksi. Refleksi muncul setelah proses

memaafkan diri itu mampu memberikan suatu makna mendalam dari

keluarga terhadap pasien yang sedang dirawatnya. Refleksi dalam

penelitian ini dibantu dengan visualisasi berupa album mini yang dibuat

sesuai dengan hasil intervensi bereavement life review. Visualisasi dapat

meningkatkan spiritual sebagai pengingat terhadap siapa yang

menciptakan, untuk apa dia hidup dan pengulangan terhadap apa yang

telah dilakukan.12

Bereavement life review merupakan intervensi keperawatan yang

terfokus pada pendekatan dan pendampingan keluarga.19Bereavement life

29

review tidak hanya efektif digunakan untuk mengatasi kondisi negatif pada

pasien dengan penyakit kronis tetapi juga dapat digunakan pada keluarga

yang mengalami proses berduka. Hasil kajian artikel dengan teknik

wawancara dengan keluarga pasien, sebagian besar mengatakan bahwa

musibah yang terjadi saat ini merupakan teguran dari Tuhan atau kekutan

yang lebih besar supaya memperbaiki kehidupan yang selanjutnya dan

banyak bersyukur dengan segala nikmat yang sudah diberikan.(12)

30

2.6 Kerangka Teori

Gambar 2.1 Kerangka Teori

31

2.7 Kerangka Konsep

Berdasaran hasil telaah kerangka teori yang telah dijabarkan sebelumnya,

kerangka konsep pada penelitian ini adalah sebagai berikut:

Variabel independen variabel dependen

Gambar 2.2 Kerangka Konsep

Bereavement life review kesejahteraan spiritual

pada keluarga pasien

dengan penyakit terminal

32

BAB III

METODOLOGI PENELITIAN

3.1 Rancangan Strategi Pencarian Studi Literatur

Penelitian ini dilakukan dengan menggunakan metode literature

review. Metode ini bertujuan untuk mendapatkan teori-teori yang relevan

dengan permasalahan yang sedang dihadapi sehingga dapat digunakan

sebagai bahan rujukan dalam pembahasan hasil penelitian. Sumber

literatur yang digunakan dalam penelitian ini ditelusuri melalui Pubmed,

Portal Garuda, Google Schoolar dan Researchgate, dengan menggunakan

kata kunci Bereavement life review, keluarga, kesejahateraan spiritual.

Penelusuran dilakukan sejak bulan awal bulan November 2020 hingga

awal bulan Januari 2021.

3.2 Kriteria Studi Literatur

Kriteria inklusi bahan kajian yang digunakan pada penelitian ini

antara lain:

1) Rentang waktu penerbitan artikel maksimal 10 tahun terakhir (2010-2020)

2) Artikel yang mengandung kata kunci yang sama dengan topik penelitian,

kata kunci penelitian ini adalah (Bereavement life review) untuk search

engine pubmed, (keluarga, keperawatan paliatif, kesejahateraan spiritual)

untuk search egine portal garuda, google scholar, Researchgate

3) Artikel merupakan full paper dan berupa original research (bukan review

penelitian)

4) Artikel menggunakan bahasa Indonesia dan/atau bahasa Inggris

Kriteria Eksklusi :

1) Artikel tidak terakreditasi

33

Tabel 3.1 Hasil temuan artikel

3.3 Tahapan Studi Literatur

Gambar 3.1 Tahapan Studi Literatur

Data Based Temuan Literatur Terpilih

Pubmed 37 3

Portal Garuda 2 2

Google Schoolar 214 4

Researchgate 100 1

JUMLAH (n= 353 ) (n= 10 )

Pencarian Literatur

Basic Data: Pubmed, Researchgate,

Google Schoolar, Portal Garuda

Jurnal atau artikel disaring atas dasar

judul, abstrak dan kata kunci

Hasil pencarian yang tidak akan

diproses kembali (ketidaksesuaian

topik/metode, bukan original

research, duplikasi, kriteria

eksklusi) (n=280)

Hasil Pencarian (n=353)

Hasil pencarian yang akan

diproses kembali (n=73)

Hasil pencarian yang akan

diproses kembali (n=10)

Hasil pencarian yang tidak

akan diproses kembali

(ketidaksesuaian dengan topik

yang diteliti) (n=63)

Jurnal atau artikel disaring kembali

dengan melihat keseluruhan teks

Artikel atau jurnal yang relevan

dengan penelitian ini (n=10)

Hasil pencarian (n=353)

Jurnal atau artikel disaring atas dasar

rentang waktu

34

3.4 Peta Studi Literatur

Gambar 3.2 Peta Studi Literatur

Pengaruh

Bereavement Life

Review terhadap

Kesejahteraan

Spiritual pada

Keluarga Pasien

dengan penyakit

terminal

Bereavement life

review

kesejahteraan

spiritual, keluarga

1. Pengaruh Bereavement Life Review terhadap

Kesejahteraan Spiritual pada Keluarga Pasien Stroke

(Muhamad Zulfatul A’la1, Iyus Yosep2, Hana R.

Agustina2,2017)

2. Pengaruh Bereavement Life Review Terhadap Depresi

Dan Kesejahteraan Spiritual Keluarga Pasien

Kemoterapi (Safitri Dewi, Trimeilia Suprihatiningsih,

Suko Pranowo, 2019)

3. Bereavement Life Review Improves Spiritual Well-

Being And Ameliorates Depression Among American

Caregivers(Michiyo Ando, Felicia Marquez-Wong,

Gary B. Simon, Haruko Kira, Carl Becker, 2015)

4. Reducing Depression Among Family Caregivers Of

Stroke Survivors: An Intervention Of Bereavement

Life Review (A’la MZ, Yosep I, Agustina HR,2013)

5. Factors that influence the efficacy of bereavement life

review therapy for spiritual well-being: a qualitative

analysis (Michiyo Ando, Tatsuya Morita, Mitsunori

Miyashita, Makiko Sanjo, Haruko Kira, Yasuo Shima,

2010)

6. Potential utility of bereavement life review for

depression and spiritual well-being of bereaved family

members in home care: Contents of narratives (Michiyo

Ando, 2015)

7. Changes experienced by and the future values of

bereaved family member determined using narratives

from bereavement life review therapy (Michiyo ando,

Yukihiro Sakaguchi, Yasufumi Shiihara, Kumi Izuhara,

2015)

8. The Impact of Supporting Family Caregivers Before

Bereavement on Outcomes After Bereavement:

Adequacy of End-of-Life Support and Achievement of

Preferred Place of Death (Samar M. Aoun, Gail Ewing,

et all, 2010)

9. Effects of Bereavement Life Review on Spiritual Well-

Being and Depression (Michiyo Ando, Tatsuya Morita,

Mitsunori Miyashita, Makiko Sanjo, Haruko Kira, and

Yasuo Shima, 2010)

10. Universality of Bereavement Life Review for

Spirituality and Depression in Bereaved Families

(Michiyo Ando, Yukihiro Sakaguchi, Yasufumi

Shiihara, Kumi Izuhara, 2014)

35

BAB IV

HASIL DAN PEMBAHASAN

4.1 Hasil Kajian Studi Literatur

Proses pengumpulan literatur yang dilakukan dengan cara melakukan

pemilihan 353 artikel berupa google scholar (n=214), pubmed (n=37),

researchgate (n=100), dan portal garuda(n=2).yang kemudian di saring

berdasarkan ketidaksesuaian dengan topik dan tidak memenuhi kriteria

inklusi menghasilkan 73 artikel. Setelah itu dilakukan proses penyaringan

kembali terhadap artikel berdasarkan ketidaksesuaian varibel penelitian,

jurnal tidak terindeks dan artikel yang tidakdapat dibuka, dan artikel

terduplikasi menghasilkan jumlah artikel yang didapat sebanyak 10 artikel.

Jumlah artikel nasional yang diperoleh sebanyak 4 artikel dan selebihnya

sebanyak 6 artikel merupakan artikel internasional yang telah terindeks.

Proses pencarian dilakukan melalui electronic based yang terindeks,

seperti google scholar (n=4), pubmed (n=3), researchgate (n=1), dan

portal garuda (n=2).

Pada hasil kajian studi literatur, peneliti melakukan ringkasan hasil

pencarian artikel dengan menggunakan tabel sebagai gambaran umum,

seperti yang terlihat pada tabel berikut ini :

36

Tabel 4.1 Gambaran Umum Artikel / Jurnal

No Pengaran

g, Tahun Judul

Nama

Jurnal

Bahasa

Jurnal

Tujuan

Penelitian Metode Penelitian Hasil Penelitian

Kesimpulan Penelitian

1. Safitri

Dewi,

Trimeilia

Suprihati

ningsih,

Suko

Pranowo

2019

Pengaruh

bereavement life

review terhadap

depresi dan

kesejahteraan

spiritual keluarga

pasien

kemoterapi

Jurnal

Kesehatan

Al Irsyad

Indonesia Untuk

mengetahui

pengaruh

bereavement

life review

terhadap

depresi dan

kesejahteraan

spiritual

keluarga

pasien kanker

Metode penelitian

menggunakan korelasi

dengan desain quasi

experiment

Instrumen penelitian

menggunakan

kuesioner Depresi

menggunakan Black’s

Depression Inventory

(BDI), kesejahteraan

spiritual

menggunakan

spiritual well-being

scale (SWBS).

Teknik pengambilan

sampel menggunakan

purposive sampling

Populasi: seluruh

keluarga pasien yang

menjalani kemotrapi

Sampel: 80 responden

40 kelompok control

dan 40 kelompok

intervensi

Pengaruh pemberian

bereavement life review

terhadap kejadian depresi dan

kesejahteraan spiritual keluarga

pasien kemoterapi, dengan hasil

:

✓ Terdapat pengaruh berea vement life review terhadap

kejadian depresi keluarga

pasien kanker yang

menjalani kemoterapi pada

kelompok intervensi dengan

p value = 0.000

✓ Terdapat pengaruh berea

vement life review terhadap

kesejahteraan spiritual

keluarga pasien kanker yang

menjalani kemoterapi pada

kelompok intervensi dengan

p value = 0.000

✓ Terdapat perbedaan kejadian

depresi keluarga pasien

kemoterapi pada kelompok

intervensi dan kelompok

kontrol setelah kelompok

intervensi diberikan tindakan


dengan p value = 0.005

Penelitian korelasi

dengan desain quasi

experiment dengan

menggunakan kuesioner

dan di analisis dengan t

Test dengan besar

sampel berjumlah 80

responden dengan 40

kelompok intervensi

dan 40 kelompok

kontrol

Terdapat pengaruh


terhadap kejadian

depresi dan


keluarga pasien kanker

yang menjalani

kemoterapi pada

kelompok intervensi

Pemberian


pada keluarga pasien

sangat bermanfaat

dalam menurunkan

depresi dan meningkatkan

37


keluarga

2. Muhamad

Zulfatul

A’la, Iyus

Yosep,

Hana R.

Agustina

2017

Pengaruh berea

vement life review terhadap

kesejahteraan

spiritual pada

keluarga pasien

stroke

Jurnal

Keperawat

an

Padjadja

ran

Indonesia Untuk

mengetahui

pengaruh

bereavement

life review

pada kesejah

teraan

spiritual

keluarga

pasien stroke

Metode penelitian

yang digunakan

adalah quasi

eksperimental yang

menggunakan

pendekatan

kuantitatif.

Instrumen penelitian:

kuesioner SWBS

(spiritual well-being

scale)

Teknik pengambilan

sampel menggunakan

consecutive sampling

Populasi: keluarga

pasien stroke yang

merawat pasien di

rumah sakit


Dengan 14 kelompok

control dan 14

kelompok intervensi

Pengaruh bereavement life

review terhadap kesejahteraan

spiritual pada keluarga pasien

stroke, dengan hasil :

✓ Adanya perbedaan skor

rerata postest kesejahteraan

spiritual pada kelompok

kontrol dengan kelompok

intervensi (98,71 ± 3,65

dan106,5 ± 1,83; p = 0,000).

✓ Terdapat perbedaan skor

rerata kesejahteraan spiritual

pada pretest dengan posttest

padakelompok intervensi

(99,07 ± 2,95 dan 106,5 ±

1,83; p = 0,001).

Penelitian quasi

eksperimental

mengunakan

pendekatan kuantitatif

dengan menggunakan

kusioner SWBS dengn

teknik wawancara.

Sampel sebanyak 28

responden dengan 14

kelom pok kontrol dan

14 kelompok intervensi

Terdapat perbedaan

skor rerata


pada pretest dengan

posttest pada kelompok

intervensi

Terapi bereavement

life review berpengaruh

positif terhadap

peningkatan


keluarga pasien stroke

3. A’la MZ,

Yosep I,

Agustina

Reducing Depression

Among Family

Caregivers Of

Jurnal

Keperawat

an

Padjadjara

Indonesia Untuk

mengetahui

perbedaan

tingkat depresi

Metode Penelitian

yang digunakan quasi

eksprimental

menggunakan

Hasil penelitian bereavement

life review, antara lain :

✓ Tingkat depresi setelah

Penelitian quasi

eksprimental meng

gunakan pendekatan

kuantitatif dengan

38

HR

2013

Stroke Survivors: An Intervention

Of Bereavement

Life Review

n di antara

pengasuh

keluarga

stroke

selamat

sebelum dan

sesudah

intervensi

bereavement

life review

pendekatan kuantitatif

Instrument kusioner

Center for Epidemio

logical Studies

Depression Scale

(CES-D) dengan

teknik wawancara.

teknik pengambilan

sample menggunakan

purposive sampling

populasi: semua

keluarga pasien yang

merawat

sample: 28 responden

intervensi berbeda secara

signifikan pada kelompok

(55,93 ± 2,79 dan 49,79 ±

4,53; p = 0,000).

✓ Terdapat perbedaan tingkat

depresi secara signifikan

pada kelompok intervensi

sebelum dan sesudah

intervensi (56 ± 2,51 dan

49,79 ± 4,53; p = 0,001).

✓ Bereavement life review berpengaruh positif dan

dapat mengurangi depresi,

serta menaikan


keluarga melalui proses

rekontekstualisasi,

memaafkan dan refleksi

mengguna kan kusioner

Center for Epide

miological Studies

Depression Scale (CES-

D) dengan teknik

wawan cara. Sampel

sebanyak 28 responden

pada ruangan Melati

RSD Soebandi Jember

Terdapat hubungan

antara Berea vement life

review dengan

pengurangan deperesi

pada kelompok

intervensi

Bereavement life

review berpengaruh

terhadap kesejahteaan

spiritual keluarga

karena dapat meng

urangi depresi di antara

keluarga pasien stroke

4. Michiyo

Ando &

Tatsuya

Morita &

Mitsunori

Miyashita

& Makiko

Sanjo &

Haruko

Factors that influence the

efficacy of

bereavement life review therapy

for spiritual well-

being: a qualitative

Support

Care

Cancer

Journal

Inggris Untuk

mengetahui

faktor – faktor

mempengaru

hi efektifitas

bereavement

life review ter

hadap kesejah

Metode penelitian

yang digunakan adalah

kuatitatif

Instrument penelitian

menggunakan kuisioner dengan

Hasil faktor mempengaruhi


terhadap kesejahteraan

spiritual, yaitu :

Faktor-faktor seperti

“kenangan indah tentang

keluarga”, “kehilangan” dan

rekonstruksi”, dan “kenangan

Penelitian kuatitatif

dengan menggunakan

alat kue sioner FACIT-

Sp dengan teknik wa

wancara dengan jumlah

responden 21 keluarga

Jepang yang menjalani

perawatan paliatif

39

Kira &

Yasuo

Shima

2010

analysis

teraan spiritual teknik wawancara

FACIT-Sp

Populasi: keluarga

pasien yang menjalai

perawatan paliatif


menyenangkan tentang hari-hari

terakhir” umumnya ditemukan

pada kelompok efektif.

Faktor-faktor seperti

"penderitaan dengan ingatan",

"penyesalan dan" rasa bersalah,"

dan "ketidaksepakatan tentang

pengaturan pemakaman" lebih

sering terjadi pada kelompok

yang tidak efektif

Faktor - faktor seperti

“kenangan indah

tentang keluarga,

kehilangan dan

rekonstruksi, dan

kenangan men

yenangkan tentang

masa lalu hari”

dikaitkan dengan

peningkatan spiri tual

kesejahteraan keluarga

yang ditinggalkan

5. Michiyo

ando,

Felicia

Marquez-

Wong,

Gary B.

Simon,

Haruko

Kira, Carl

Becker,

2015

Bereavement life

review improves

spiritual well-being and

ameliorates

depression

among

American

caregivers

Palliative

and

Supportive Care,

Cambridge

University

Press

Inggris Untuk

mengetahui

manfaat

bereavement

life review

(BLR) untuk

meningkatkan

kesejahteraan

spiritual dan

menurunkan

depresi pada

keluarga

Hawaiian-

American dan

mengidentifik

asi perubahan

yang terjadi

ketika

merawat orang

yang dicintai

Metode Penelitian

yang di gunakan

merupakan kuantitatif

Instrument yang

digunakan kuesioner

Depresi menggunakan

Black’s Depression

Inventory (BDI),


menggunakan


(FACIT-Sp) dengan

pelaksanaan teknik

wawancara kuesioner

teknik pengambilan

sample menggunakan

purposive sampling

Hasil penelitian pengaruh

bereavement life review dalam

meningkatkan kesejahteraan

spiritual dan menurunkan

depresi, antara lain :

✓ Nilai FACIT–Sp scores

meningkat secara signifikan

dari 34.1+9.63 to 36.3+10.6

(t ¼ –2.6, p , 0.05, dan nilai

BDI menurun secara

signifikan dari 11.7+7.7 to

8.8+7.0 (t ¼ 2.27, p , 0.05).

✓ Lima kategori dipilih dari

pernyataan yang terjadi

perubahan selama proses

perawatan dan berakibat

menurunkan kematian

Penelitian kuantitatif

dengan menggunakan

kuesioner dengan

pelaksanaan teknik

wawancara dengan

sampel 20 keluarga

Hawaiian Americans

Nilai FACIT–Sp

scores meningkat dan

nilai BDI menurun

secara signifikan

Terapi berea vement

life review efektif untuk

meningkatkan


dan menurunkan

depresi

40

menjelang ajal Populasi: keluarga

Hawaiian Americans

yag merawat

Sample: 20 responden

6. Samar M.

Aoun, Gail

Ewing, et

ll

2010

The Impact of Supporting

Family

Caregivers Before

Bereavement on Outcomes After

Bereavement:

Adequacyof End-of-Life Support

and Achievement

of Preferred

Placeof Death

Journal of Pain and

Symptom

Manageme

nt

Inggris Penelitian ini

menge tahui

sejauh mana

intervensi

penggunaan

Carer Support

Needs Asses

sment Tool

(CSNAT)

selama peri

ode pengasuh

an telah mem

pengaruhi

persepsi

keluarga yang

berduka

tentang

kecukupan

dukungan,

kesedihan dan

kesejahteraan

spiritual

Metode penelitian

yang digunakan


Instrument yang di

gunakan merupakan

kuesioner Carer

Support Needs Asses

sment Tool (CSNAT)

dengan pelaksanaan

teknik wawancara

Teknik pengambilan

sampel menggunakan

consecutive sampling

Populasi merupakan

keluarga Australia

Barat setelah 4-6

bulan berduka.

Sample: 212

Hasil penelitian dukungan

keluarga terhadap proses

berduka , antara lain :

✓ Tingkat respons adalah 66%

(152 intervensi; 60 kontrol).

Kelompok intervensi merasa

bahwa pra berkabung mereka

kebutuhan dukungan telah

terpenuhi secara signifikan

lebih besar daripada

kelompok kontrol (d=0,43,

P=0,001) dan bahwa pasien

telah mencapai tempat

kematian pilihan mereka

lebih sering menurut

pengasuh mereka (79,6% vs

63,6%, P= 0,034).

✓ Ada persetujuan lebih baik

pada pilihan tempat kematian

antara pasien dan pengasuh

mereka dalam kelompok

intervensi (P 0,02).


dengan menggunakan

kuesioner dengan

pelaksanaan teknik

wawan cara dengan

sampel 312 keluarga

Australia Barat setelah

4-6 bulan berduka

Kelompok intervensi

merasa bahwa pra

berkabung mereka dan

kebutuhan dukungan

telah terpenuhi secara

signifikan lebih besar

dari pada kelompok

kontrol

Penelitian ini

membuktikan intervensi

CSNAT memberikan

penerimaan yang

adekuat pada keluarga

yang berduka

41

responden dengan 150

kelompok intervensi

dan 60 kelompok

control

7. Michiyo

Ando,

Tatsuya

Morita,

Mitsunori

Miyashita,

Makiko

Sanjo,

Haruko

Kira, and

Yasuo

Shima

2010

Effects of

Bereavement Life

Reviewon

Spiritual Well-

Being and

Depression

Journal of

Pain and

Symptom

Manageme

nt

Inggris Untuk menye

lidiki efek dari

berea vement

life review

tentang kese

jahteraan

spiritual

keluarga yang

ditinggalkan

anggota

Metode penelitian

yang digunakan


Instrument yang

digunakan merupakan

kuesioner Depresi




spiritual

menggunakan


(FACIT-Sp) dengan

pelaksanaan teknik

wawancara

teknik pengambilan

sample menggunakan

purposive sampling

populasi keluarag

pasien yang berduka

sample: 21 responden

Hasil penelitian manfaat


terhadap kesejahteraan spiritual

dan depresi, antara lain :

✓ FACIT-Sp scores increased

from 19.9±5.8 to 22.8±5.1

(Z=-2.2,P=0.028 dengan uji

Wilcoxon signed-rank)

dannilai BDI menurun dari

10.8±7.7 ke 6.8±5.8 (Z=-3.0,

P = 0.003).


dengan menggunakan

kuesioner dengan

pelaksanaan teknik

wawancara dengan

sampel 8 keluarga

Jepang

Nilai FACIT-Sp

meningkat dan nilai

BDI menurun dengan

uji Wilcoxon signed-

rank

Terapi bereavement

life review memiliki potensi untuk meningkatkan kesejahteraan spiritual dan mengurangi depresi anggota keluarga yang berduka

8. Michiyo

Ando,

Yukihiro

Sakaguchi,

Yasufumi

Universality of

Bereavement Life

Review for Spirituality and

Depression in

American

Journal of

Hospice & Palliative

Inggris Untuk mene

liti mengeta

hui efektifitas

bereavement

life review

Metode penelitian

yang digunakan kuanti

tatif

Instrument yang

Hasil penelitian manfaat


terhadap kesejahteraan spiritual

dan depresi, antara lain :

Penelitian kuanti tatif

dengan menggunakan

kuesioner dengan

pelaksanaan tek nik

wawancara dengan

42

Shiihara,

Kumi

Izuhara

2014

Bereaved Famili

es

Medicine pada depresi

dan kesejah

teraan spiri

tual dari ke

luarga yang

berduka da

lam perawat

an paliatif

kondisi tidak

khusus

digunakan merupakan

kuesioner Depresi




spiritual

menggunakan


(FACIT-Sp) dengan

pelaksanaan teknik

wawancara

Teknik pengambilan

sample menggunakan

purposive sampling

Populasi keluarga

pasien yang berduka


✓ Nilai BDI-II mengalami

penurunan signifikan dari

14.4 + 9.2 ke 11.6 + 7.4 (t =

2.15, P = .045) dan nilai

FACIT-Sp mengalami

peningkatan signifikan dari

24.3 + 10.1 ke 25.9 + 11 (t =

1.0, P = .341) dari sebelum

sampai setelah intervensi

sampel 20 keluarga

Jepang yang mengalami

proses berduka

Nilai BDI-II

mengalami penuru nan

signifikan dan nilai

FACIT-Sp mengalami

pening katan signifikan

Hasil penelitian

membuktikan bahwa

berea vement life

review dapat

mengurangi depresi dan

mening katkan

kesejahte raan spiritual

keluarga yang

ditinggalkan sete lah

kematian keluarga

9. Michiyo

Ando

2015

Potential utility

of bereavement

life review for depression

andspiritual well-being of

bereaved family

members in home care: Contents

of narratives

Journal of

Japanese

Clinical Psycho

logy

Inggris Untuk meng

etahui manfaat

potensi berea vement life

review sebagai

intervensi psi

kologis indi

vidu pada

anggota ke

luarga yang

menderita

penyakit

terminal untuk

Metode Penelitian

yang digunakan

merupakan kualitatif

Instrument penelitian

menggunakan

kuesioner Depresi



(BDI), kesejahteraan spiritual

Hasil penelitian pengaruh

bereavement life review dengan

kesejahteraan spiritual, antara

lain :

✓ Nilai rata – rata the

Functional Assessment of

Chronic Illness Therapy–

Spiritual Well-Being

(FACIT-Sp) mengalami

peningkatan yang signifikan

dari 19.1±9.1 ke 25.1±9.0 (p

< .05, t = -3.31)setelah

Penelitian kualitatif

dengan menggunakan

kuesioner dengan

pelaksanaan teknik

wawan cara

Sebagian besar

responden terapi

menghasilkan nilai

positif.

Terapi bereavement life review

43

mengkaji

kesejahteraan

spiritual dan

depresi

menggunakan


(FACIT-Sp) dengan

pelaksanaan teknik

wawancara

teknik pengambilan

sample menggunakan

purposive sampling

Populasi: keluarga

pasien yang sedang

berduka

Sample: 7 responden

melakukan bereavement life review

✓ Nilai rata – rata Beck

DepressionInventory-II

(BDI-II)mengalami

penurunan dari 9.7±11.5 ke

6.1±6.9 (p > .05, t = 1.7),

walaupun perubahan nilai

tersebut tidak signifikan

✓ Sebagian besar responden

terapi menghasilkan nilai

positif, namun terdapat

responden yang mengalami

nilai negatif dan depresi

setelah kematian ayahnya.

menghasilkan nilai

positif terhadap

kesejahteraan spi ritual

keluarga pasien

10. Michiyo

ando,

Yukihiro

Sakaguchi,

Yasufumi

Shiihara,

Kumi

Izuhara

2015

Changes

experienced by and the future

values of

bereaved family member

determined using

narratives from bereave ment life

review therapy

Palliative

and Supportive

Care, Cambridge

University

Press

Inggris Untuk

mengetahui

perubahan

berduka

anggota

keluarga di

Jepang dan

untuk

menentukan

kegiatan apa

yang akan

mereka hargai

di masa depan

berdasarkanna

rasi dari

bereavementlif

ereview, yang merupakan

Metode penelitian

yang digunakan

merupakan kualitatif

Instrument yang

digunakan kuesioner


(FACIT-Sp) dengan

pelaksanaan teknik

wawancara

teknik pengambilan

sample menggunakan

purposive sampling

Populasi: keluarga

pasien yang berduka

Hasil penelitian perubahan

pengalaman dan nilai masa

depan pada bereavement life

review , antara lain :

✓ mengidentifikasi empat

bidang perubahan (belajar

dari kematian dan

pertumbuhan diri, proses

penyembuhan, berhubungan

dengan orang lain,

berhubungan dengan

masyarakat, dan melakukan

peran keluarga baru).

✓ Mengidentifikasi lima

kategori kegiatan yang

dihargai (kerja duka

berkelanjutan, hidup dengan

Penelitian kualitatif

dengan menggunakan

kuesioner dengan

pelaksanaan teknik

wawancara dengan

sampel 20 keluarga

Jepang

Mengidentifikasi

empat bidang

perubahan dan

mengidentifikasi lima

kategori kegiatan yang

dihargai

Terapi berea vement

life review dapat

berkontribusi positif

44

jenis

psikoterapi

yang

digunakan

untuk

mengobati

depresi dan

meningkatkan

kesejahteraan

spiritual

di Jepang


filosofi, mencapai peran

hidup, menjaga hubungan

manusia yang baik, dan

menikmati hidup)

untuk mengantisipasi

kesedihan

45

4.2 Pembahasan Hasil Kajian Studi Literatur

Pada bagian ini merupakan tempat peneliti dalam mengemukakan

pendapat dan argumentasi secara bebas bertanggung jawab, tetapi

diungkapkan secara singkat dan logis sesuai dengan tujuan penelitian yang

ingin dicapai. Pembahasan berdasarkan dari kajian literatur yang telah

dilakukan pada bab sebelumnya. Berdasarkan hasil penelitian dari

beberapa studi literatur tersebut, peneliti berpendapat bahwa bereavement

life review berpengaruh untuk meningkatkan kesejahteraan spiritual pada

keluarga pasien. Berdasarkan 10 jurnal yang memiliki pengaruh terhadap

kesejahteraan spiritual tersebut ditemukan masing – masing memiliki

kelebihan, kesamaan dan kekurangannya.

4.2.1. Kesejahteraan Spiritual

Kesejahteraan spiritual terbentuk dari tinjauan /konsep yang

abstrak yang diartikan oleh beragam individu dalam berbagai cara.

Kesejahteraan spiritual dapat dipandang dari dimensi eksistensial

danreligi. Eksistensial mengarah pada dimensi horizontal berupa arti dan

tujuan hidup, sedangkan religi mengarah pada dimensi vertikal yang

mengarah kepada hubungandengan Tuhan atau kekuatan yang lebih

besar. Spiritualitas memiliki hubungan dengan status kesehatan.(23)

Kesejahteraan spiritual keluarga pasien dapat terjadi

akibat dua aspek yang mengalami peningkatan berupa aspek

eksistensial dan aspek religiusitas. Aspek eksistensional

meningkat akibat dari peningkatan self relience. Kesejahteraan

spiritual adalah proses saat individu memandang tentang

harapan yang terlihat. Kesejahteran spiritual dapat dinilai

secara kuantitatif yang disajikan dalam skor ataupun dinilai

46

secara kualitatif dalam bentuk narasi. Kesejahteraan spiritual

merupakan aspek penyembuhan bagi pasien dan keluarga

dengan penyakit kronis. (23)

Kesejahteraan spiritual dapat didefinisikan sebagai ekspresi dari

kesehatan mental seseorang, yang didasarkan pada kesejahteraan religius

dan kesejahteraan dari proses kelangsungan hidup individu. Kesehatan

mental juga menunjukkan kualitas hidup individu pada tingkat spiritual,

atau, dalam arti luas, indikator kesehatan mental mereka.(19)

Pada keluarga pasien yang memiliki kondisi kesejahteraan spiritual

yang tinggi, maka diasumsikan keluarga pasien dapat memaknai

hidupnya dan memiliki tujuan hidup yang pasti, serta memiliki

hubungan dengan Tuhan yang baik. Hal ini akan memberikan dampak

pada keluarga pasien tersebut memiliki kekuatan lebih besar dalam

menghadapi penyakit dan menjalani pengobatan, sehingga perasaan

sedih berkepanjangan atau berkelanjutan akan berkurang dan menurun.

Kesejahteraan spiritual diperoleh dari cara mengatasi

masalah spiritual yang dialami oleh individu yang merupakan

masalah mandiri keperawatan dan diselesaikan dengan

intervensi mandiri. Kesejahteraan spiritual memerlukan

dukungan spiritual tidak hanya terbatas dalam praktik

keagamaan atau ibadah, seperti membaca kitab suci maupun

berdoa, akan tetapi dukungan spiritual juga mengacu pada

menenangkan, menghibur, mendengarkan, menghormati

privasi, serta membantu mencari makna dan tujuan hidup

47

keluarga. Hal tersebut dibutuhkan oleh keluarga yang

mengalami proses berduka dalam meningkatkan kesejahteraan

spiritual pasiendengan penyakit terminal, dan menurunkan

distress psikososial dan mengantarkan ke kematian yang sejahtera.

Terpenuhinya spiritualitas seseorang mampu mengurangi, mencegah dan

melindungi diri dari ganguan kejiwaan seperti depresi, stress, dan

mengurangi penderitaan serta meningkatkan proses adaptasi dan

penyembuhan.(24)

Berdasarkan kajian tinjauan literatur yang telah dilakukan diketahui

seluruh artikel tersebut menyatakan bahwa kesejahteran spiritual pasien

dalam kondisi terminal dan dalam perawatan paliatif dikategorikan

dalam kondisi kesejahteraan spiritual yang baik atau tinggi. Kondisi

kesejahteraan spiritual yang baik pada keluarga ditandai dengan perasaan

tidak cemas atau kondisi tenang, tidak mengalami depresi, tumbuhnya

harapan sembuh terhadap pasien, dan adanya keyakinan bahwa Tuhan

akan membantu kesembuhan terhadap anggota keluarganya. Hal ini akan

memberikan dampak pada keluarga pasien tersebut memiliki kekuatan

lebih besar dalam menghadapi penyakit dan menjalani pengobatan

sehingga perasaan sedih berkepanjangan atau depresi akan berkurang

dan menurun.

Kesejahteraan spiritual berhubungan dengan cara mengantisipasi

perasaan sedih, tidak berdaya, depresi dan perasaan negative lainnya

secara signifikan. Berdasarkan hal tersebut maka salah satu upaya untuk

menurunkan kondisi negatif pada keluarga pasien dengan meningkatkan

kesejahteraan spiritual keluarga pasien. Kesejahteraan spiritual dapat

ditingkatkan melalui intervensi positif yang dapat meningkatkan status

48

emosional keluarga pasien, sehingga perasaan atau kondisi negatif pada

keluarga pasien dapat menurun.

Kesejahteraan spiritual merupakan faktor penting yang dapat

mempengaruhi beban keluarga baik secara fisik, emosional, finansial,

dan sosial, serta kesehatan psikologis. Penelitian Spurlock25

menunjukkan keluarga yang memiliki tingkat kesejahteraan spiritual

lebih tinggi (96,69) cenderung memiliki skor beban yang lebih rendah

(37,99), dan berkorelasi terhadap kualitas hidup secara menyeluruh.

Keluarga yang memiliki kesejahteraan spiritual yang baik dapat

diartikan sebagai adanya hubungan yang baik antara keluarga dengan

Tuhan, dan terdapat keyakinan serta adanya perasaan damai ketika

Tuhan menjadi sumber kekuatan dalam kehidupan mereka, sehingga

bagaimanapun sulitnya keadaan yang harus mereka hadapi, mereka tetap

meyakini kehadiran Tuhan yang pada akhirnya akan memberikan

dampak yang positif terhadap perasaan mereka dan memberikan

kekuatan sehingga mereka mampu merasakan perasaan tenang dan

tentram.

Berdasarkan hasil kajian 10 literatur yang digunakan dalam

penelitian ini, diketahui terdapat 3 artikel yang menggunakan alat ukur

yang sama berupa spiritual well-being scale (SWBS). SWBS terdiri

dari dua subskala, Religion well-being (RWB) dan Exstensional

Well-being (EWB). Masing-masing subskala terdiri dari 10 item

pernyataan. Total item pernyataan SWBS sebanyak 20 item.

Subskala RWB terdapat pada item pernyataan nomor 1, 3, 5, 7,

9, 11, 13, 15, 17, dan 19. Subskala EWB terdapat pada item 2,

4, 6, 8, 10, 12, 14, 16, 18, dan 20. Pernyataan unfavourable

49

terdiri dari sembilanitem yaitu item nomor 1, 2, 5, 6, 9, 12, 13,

16dan 18. Setiap item pernyataan memiliki nilai1–6. Penilaian

untuk pernyataan favourable berupa sangat tidak setuju (STS)

dinilai 1,Cukup tidak setuju (CTS) dinilai 2, tidaksetuju (TS)

dinilai 3, setuju (S) dinilai 4,cukup setuju (CS) dinilai 5, dan

sangat setuju (SS) dinilai 6. Sedangkan penilaian untuk

unfavourable adalah sebaliknya.

Hasil akhir adalah skor kesejahteraan spiritual, dimana

total skor kesejahteraan spiritual antara 20–120, semakin tinggi

skor mencerminkan semakin tinggi tingkat kesejahteraan

spiritual responden. SWBS telah banyak dikembangkan dalam

beberapa bahasa antara lain, Indonesia, Malaysia, spanyol,

Portugis, China dan Arab. Masing-masing negara telah menguji

validitas dari SWBS ini. Hasil penulusuran literatur didapatkan

tiga bahasa yang telah di validasi terjemahan SWBS yaitu Arab,

Inggris dan Malaysia, dengan nilai r > 0,80.

Berdasarkan hasil kajian 10 literatur yang digunakan dalam

penelitian ini, diketahui terdapat 4 artikel yang menggunakan alat ukur

yang sama berupa Functional Assessment of Chronic Illness Therapy-

Spiritual Well-Being (FACIT-Sp) dan the Beck Depression Inventory-II

(BDI-II).Alat ukur ini digunakan untuk mengukur spiritualitas atau

kerohanian. Item diberi skor 5 poin skala, mulai dari 4 (sangat setuju)

50

hingga 0 (sangat tidak setuju). Depresi Beck Inventory-II (BDI-II)

digunakan untuk mengukur depresi dari anggota keluarga. BDI-II

meliputi 21 item yang dicetak dengan 4 poin skala, mulai dari 3 (sangat

setuju) sampai 0 (sangat tidak setuju). validitas dan reabilitas alat ukur

FACIT-Sp dan BDI-II telah teruji dengan baik.

4.2.2. Pengaruh Bereavement Life Review terhadap Kesejahteraan

Spiritual

Berdasarkan hasil analisis literatur yang digunakan, terdapat 7

artikel yang menggunakan bereavement life review dengan teknik

wawancara pada keluarga pasien. Bereavement life review terdiri dari

dua sesi wawancara. Pada sesi pertama, peserta meninjau hidupnya

dengan terapis. Setiap sesi wawancara berlangsung 30 hingga 60 menit

dan interval antara sesi pertama dan kedua adalah dua minggu.

Pertanyaan-pertanyaan berikut adalah ditanyakan pada sesi bereavement

life review: 1) Apa yang menurut Anda paling terpenting dalam

kehidupan Anda, berikan alasannya?, 2) Hal apa yang menurut Anda

yang paling berkesan dari pasien sampai saat ini?, 3) Sampai saat ini,

ketika merawat pasien apa yang paling berkesan menurut Anda?, 4) Hal

apa yang menjadikan diri Anda bangga dalam merawat pasien sampai

saat ini?, 5) Hal apa yang berperan terhadap kehidupan Anda?, 6) Apa

yang Anda banggakan di hidup Anda?.

Hasil wawancara dengan pasien direkam. Sesi pertama dilakukan

selama kurang lebih satu jam, mulai dari pra interaksi sampai terminasi

dalam tahapan komunikasi terapeutik. Setelah wawancara sesi pertama

selesai, terapis mentranskripsi hasil wawancara dan peneliti membuat

suatu mini album, kata kunci dari pertanyaan digambarkan di dalam

album dan diberikan kepada pasien. Sesi kedua dilakukan satu minggu

setelah sesi pertama. Sesi kedua peneliti dan terapis mendampingi

51

keluarga untuk melihat album yang telah dibuat peneliti. Sesi kedua

dilakukan kurang lebih satu jam. Setiap responden melewati sesi

pertama dan kedua sebanyak satu kali.

Tahap dalam bereavement life reviewmeliputi rekonstektualisasi,

memaafkan terhadap diri individu dan proses refleksi. Ketiga tahap ini

mempunyai karakteristik yang berbeda dalam individu dan merupakan

proses yang dilewati dalam proses bereavement life review.12

Proses rekontekstualisasi terbentuk saat responden dan terapis

melakukan interaksi pada pertemuan pertama. Menurut Ando10, tahap

rekonstektualisasi dalam bereavement life review muncul ketika

responden mampu membentuk lingkungan yang membuat responden

melupakan sedikit kesedihannya. Tahap rekontekstualisasi adalah proses

penguatan tahap acceptance dalam tahapan berduka, respon individu

dalam rekontekstualiasi akan lebih cepat ketika individu telah dalam

tahap acceptance.

Tahap kedua adalah memaafkan terhadap diri individu (forgiving).

Proses ini merupakan upaya peningkatan kemampuan koping individu

dalam menghadapi proses berduka dan dapat meningkatkan spiritualitas.

Proses memaafkan ini muncul setelah akhir sesi pertama dan menuju

proses sesi ke dua. Menurut Ando10, tahap setelah pengkondisian

lingkungan adalah mengingat memori yang baik dan mengevaluasi

memori yang buruk. Proses memafkan terhadap diri individu ini muncul

ketika terdapat evaluasi dari memori atau hal yang berkesan dari

responden saat bersama dan merawat pasien. Proses memaafkan

terhadap diri individu ini ditandai dengan peningkatan emosi, menangis

dan merasakan keadaan pasien sebagai hal yang disyukuri tanpa

menyalahkan diri sendiri sebagai keluarga terdekat pasien. Proses ini

merupakan upaya penemuan makna hidup responden sehingga dapat

menata hidup lebih baik dan meningkatkan self relience individu. Tahap

52

memafkan ini membutuhkan waktu 2–4 hari sebagai upaya peningkatan

selfrelience.

Proses selanjutnya adalah refleksi. Refleksi muncul setelah proses

memaafkan diri itu mampu memberikan suatu makna mendalam dari

keluarga terhadap pasien yang sedang dirawatnya. Refleksi dalam

penelitian ini dibantu dengan visualisasi berupa album mini yang dibuat

sesuai dengan hasil intervensi bereavement life review. Visualisasi dapat

meningkatkan spiritual sebagai pengingat terhadap siapa yang

menciptakan, untuk apa dia hidup dan pengulangan terhadap apa yang

telah dilakukan.12

Bereavement life review merupakan intervensi keperawatan yang

terfokus pada pendekatan dan pendampingan keluarga.19Bereavement

life review tidak hanya efektif digunakan untuk mengatasi kondisi

negatif pada pasien dengan penyakit kronis tetapi juga dapat digunakan

pada keluarga yang mengalami proses berduka. Hasil kajian artikel

dengan teknik wawancara dengan keluarga pasien, sebagian besar

mengatakan bahwa musibah yang terjadi saat ini merupakan teguran dari

Tuhan atau kekutan yang lebih besar supaya memperbaiki kehidupan

yang selanjutnya dan banyak bersyukur dengan segala nikmat yang

sudah diberikan.

Berdasarkan analisis literature ditemukan 9 artikel yang

menyatakan bahwa bereavement life review memberikan manfaat atau

pengaruh yang signifikan terhadap kesejahteraan spiritual dalam proses

berduka pada keluarga pasien. Hal ini dibuktikan dengan adanya

peningkatan yang signifikan nilai atau skor rata-rata FACIT-sp dan BDI-

II dari sebelum dilakukan intervensi / terapi dibandingkan dengan

setelah dilakukan intervensi bereavement life review dengan nilai p value

< 0,005. Peningkatan kesejahteraan spiritual akan dapat lebih terlihat

53

ketika menggunakan skor / nilai untuk menggambarkan terjadinya

peningkatan atau penurunan kesejahteraan spiritual.

Bereavement life reviewmerupakan pengembangan life review dan

gunakan untuk keluarga yang mengalami proses berduka. Hal yang

ditambahkan dalam bereavement life reviewadalah adanya visualisasi

autobiografi menggunakan album kehidupan. Visualisasi tersebut

diharapkan mampu menjadikan pasien lebih mampu melihat

kehidupannya bernilai. Kehidupan yang bernilai mampu meningkatkan

kesehatan mental keluarga dan dapat meningkatkan kualitas perawatan

terhadap pasien.19

Bereavement life reviewmerupakan intervensi yang prosesnya

dengan mencari dan menggali makna hidup individu, sehingga makna

kesejahteraan spiritualitas pasien atau keluarga keluarga dapat

meningkat. Bereavement life reviewjuga merupakan intervensi yang

mudah, cepat, dan dapat dilakukan oleh perawat yang terlatih.11

Penggunaan bereavement life review dapat digunakan dalam semua jenis

kondisi atau setting dari keluarga. Semua jenis penyakit terminal

membutuhkan perawatan paliatif, sehingga beberapa penyakit terminal

kemungkinan perlu perawatan paliatif dapat menggunakan bereavement

life review dalam salah satu intervensinya. Bereavement life review

fokus terhadap pendampingan pada keluarga dengan pendekatan family-

centered care. Pendampingan keluarga dan peningkatan spiritualitas

keluarga adalah salah satu upaya penerapan family-centered carepada

pasien dan keluarga. Saat kondisi menghadapi kematian, bereavement

care merupakan pendampingan dan dukungan mental spiritual kepada

keluarga yang akan ditinggal dan setelah ditinggal pasien.24

54

4.3 Keterbatasan Penelitian

Selama penelitian studi literature ini dilakukan terdapat beberapa

keterbatasan yang dihadapi oleh peneliti, yaitu :

a. Pada tahapan pencarian data literature melalui mesin pencari

data artikel ditemukan banyak sekali jurnal / artikel dengan

pembahasan menarik, namun tidak bisa diakses lebih jauh

karena jurnal tersebut membutuhkan akses khusus agar jurnal

tersebut dapat diakses dengan baik

b. Jurnal - jurnal yang membahas tentang bereavement life

review dan kesejahteraan spiritual yang ditemukan sangat

banyak, namun hanya beberapa jurnal yang variabelnya

spesifik terhadap kesejahteraan spiritual keluarga pasien

c. Beberapa jurnal / artikel yang membahas bereavement life

review dan kesejahteraan spiritual tidak dilengkapi Digital

Object Indentifer (DOI)

d. Dalam proses pencarian jurnal / artikel tersebut, peneliti

kesulitan mendapatkan artikel tersebut sehubungan karena

artikel tersebut tidak bias diakses secara full text.

e. Pada tahapan analisa data artikel, terdapat beberapa hambatan

karena terdapat beberapa artikel atau jurnal yang diakses

merupakan jurnal internasional yang menggunakan bahasa

Inggris, sehingga interpretasi atau analisis kesimpulan

terhadap jurnal tersebut dapat terjadi kesalahan arti atau

kekeliruan dalam pengambilan kesimpulan.

55

BAB V

KESIMPULAN DAN SARAN

5.1 Kesimpulan

Hasil penelitian lieteratur review yang telah dilakukan tentang

bereavement life review dan kesejahteraan spiritual dapat diperoleh

kesimpulan bahwa keefektifan pemberian bereavement life review

berpengaruh positif dan efektif terhadap meningkatkan kesejahteraan

spiritual pada keluarga pasien.

Hal ini dikarenakan bereavement life review mampu mereflesikan dan

mengatasi perasaan negative pada keluarga pasien dengan mengubah

perasaan negatif tersebut menjadi hal - hal yang positif, sehingga keluarga

pasien dapat menerima kondisi atau kejadian berduka yang menimpa

anggota keluarganya.

5.2 Saran

Berdasarkan kajian literature review yang sudah dilakukan oleh

peneliti, maka dapat disarankan beberapa hal berikut ini :

a. Bagi pendidikan

Dengan adanya literatur review dapat memberikan manfaat dan

menambah informasi baru tentang bagaimana pelaksanaan bereavement

life review dalam meningkatkan kesejahteraan spiritual keluarga pasien

b. Bagi masyarakat

Penelitian ini diharapkan dapat menambah pengetahuan tentang

bereavement life review dan menerapkan terapi tersebut dalam

meningkatkan kesejahteraan spiritual pada keluarga pasien yang sedang

mengalami proses berduka.

56

c. Bagi peneliti selanjutnya

Diharapkan bagi peneliti selanjutnya dapat menggunakan hasil studi

literatur ini sebagai tambahan wawasan dan pengetahuan agar lebih baik

lagi dalam meneliti bereavement life review, dan terapi yang diberikan

lebih sempurna pada kelurga pasien. Selain itu, harap dipertimbangan dan

dilakukan juga terapi bereavement life review ini pada keluarga pasien

yang mengalami penyakit degenaratif, bukan hanya pada keluarga pasien

dalam kondisi terminal.

57

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1. Braz Evangelista CI, Emília Limeira Lopes MI, Fátima Geraldo da Costa

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Oliveira AI, et al. Palliative care and spirituality: an integrative literature

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7. Persatuan Perawat Nasional Indonesia. Standar Diagnosis. 2017;103.

8. Clarke J. A critical view of how nursing has defined spirituality. J Clin

Nurs. 2009;18(12):1666–73.

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9. Willey J. NANDA International Nursing Diagnoses : Definition and

Classification 2013-2014 [Internet]. John Wiley, editor. NANDA

International Nursing Diagnoses. The Atrium, Southern Gate, Chichester,

West Sussex, PO19 8SQ, UK; 2012. 904 p. Available from:

http://library1.nida.ac.th/termpaper6/sd/2554/19755.pdf

10. Burke LA, Neimeyer RA. Complicated Spiritual Grief I: Relation to

Complicated Grief Symptomatology Following Violent Death

Bereavement. Death Stud. 2014;38(4):259–67.

11. Ando M, Morita T, Miyashita M, Sanjo M, Kira H, Shima Y. Effects of

bereavement life review on spiritual well-being and depression. J Pain

Symptom Manage [Internet]. 2010;40(3):453–9. Available from:

http://dx.doi.org/10.1016/j.jpainsymman.2009.12.028

12. Ando M, Sakaguchi Y, Shiihara Y, Izuhara K. Universality of Bereavement

Life Review for Spirituality and Depression in Bereaved Families. Am J

Hosp Palliat Med. 2014;31(3):327–30.

13. Ando M, Marquez-wong F, Simon GB, Kira H, Becker C. Bereavement life

review improves spiritual well-being and ameliorates depression among

American caregivers. 2015;319–25.

14. Iswari MF. KEBUTUHAN SPIRITUAL Konsep dan Aplikasi dalam.

15. Alijani Renani H, Hajinejad F, Idani E, Ravanipour M. Children with

Asthma and Their Families’ Viewpoints on Spiritual and Psychological

Resources in Adaptation with the Disease. J Relig Health.

2014;53(4):1176–89.

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Kesehatan F. Kesejahteraan Spiritual Keluarga Pasien Stroke dan

Kaitannya dengan Depresi Kesejahteraan Spiritual Keluarga Pasien Stroke

dan Kaitannya dengan Depresi Spiritual Wellbeing of Stroke Family

Caregiver and its Relationship with Depression. :129–33.

19. Juwita AP, Maulana MA, Prodi M, Fakultas K, Universitas K,

Keperawatan D, et al. Kesesuaian antara spiritual assessment scale dan

spirituality well- being scale sebagai instrumen pengukuran spiritualitas

pasien rawat inap yarsi pontianak.

20. Schultz M, Meged-Book T, Mashiach T, Bar-Sela G. Distinguishing

Between Spiritual Distress, General Distress, Spiritual Well-Being, and

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and Coping Mechanism among Teacher Education Students of Samar State

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22. A’la MZ, Yosep I, Agustina HR. Pengaruh Bereavement Life Review

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Keperawatan Padjadjaran. 1970;5(2).

LAMPIRAN

Jurnal Kesehatan Al Irsyad (JKA), Vol. XII, No.2 September 2019 95

PENGARUH BEREAVEMENT LIFE REVIEW TERHADAP DEPRESI DAN

KESEJAHTERAAN SPIRITUAL KELUARGA PASIEN KEMOTERAPI

Effects of Bereavement Life Review on Depression and Spiritual Well-Being of

Chemotherapy Family Caregiver

Safitri Dewi1, Trimeilia Suprihatiningsih2*, Suko Pranowo3 STIKES Al-Irsyad Al-Islamiyyah Cilacap

[email protected]/ 081542859522

ABSTRAK Depresi dan penurunan kesejahteraan spiritual merupakan masalah psikologis yang

muncul pada keluarga pasien kanker. Bereavement life review merupkan intervensi untuk

keluarga pasien kanker. Tujuan penelitian ini adalah mengetahui pengaruh bereavement life

review terhadap depresi dan kesejahteraan spiritual keluarga pasien kanker. Teknik

pengambilan sampel yang digunakan adalah purposive sampling. Besar sampel dalam

penelitian ini berjumlah 80 responden dengan 40 kelompok intervensi dan 40 kelompok

kontrol. Kelompok intervensi mendapatkan bereavement life review dengan dua sesi. Depresi

diukur menggunakan Black’s Depression Inventory (BDI) sedangkan kesejahteraan spiritual

diukur menggunakan spiritual well-being scale (SWBS). Analisis data menggunakan t-test.

Hasil dependent sample t test diperoleh terdapat pengaruh bereavement life review terhadap

kejadian depresi dan kesejahteraan spiritual keluarga pasien kanker yang menjalani

kemoterapi pada kelompok intervensi dan kelompok kontrol di RSUD Prof. Dr. Margono

Soekarjo Purwokerto. Sedangkan hasil independent sample t test terdapat perbedaan

kesejahteraan spiritual keluarga pasien kanker yang menjalani kemoterapi pada kelompok

intervensi dan kelompok kontrol setelah kelompok intervensi diberikan tindakan bereavement

life review di RSUD Prof. Dr. Margono Soekarjo Purwokerto.

Kata Kunci : Depresi, Kesejahteraan Spiritual, Keluarga, Kanker, Bereavement

Life Review

ABSTRACT

Depression and decreased spiritual well-being are psychological problems that arise in

families of cancer patients. Bereavement life review is an intervention for families of cancer

patients. The purpose of this study was to determine the effect of bereavement life review on

depression and the spiritual well-being of families of cancer patients. Sample retention

technique used is purposive sampling. The sample size in this study amounted to 80

respondents with 40 intervention groups and 40 control groups. The intervention group

received a life-review review with two sessions. Depression was measured using Black's

Depression Inventory (BDI) while spiritual well-being was measured using a spiritual well-

being scale (SWBS). Data analysis using t-test. The results dependent sample t test there is an

effect of bereavement life review on the incidence of depression and spiritual well-being of

families of cancer patients who underwent chemotherapy in the intervention group and

control group in RSUD Prof. Dr. Margono Soekarjo Purwokerto. The results independent

sample t test there is a difference of spiritual welfare of cancer patient family who undergo

chemotherapy in intervention group and control group after intervention group is given

action bereavement life review in RSUD Prof. Dr. Margono Soekarjo Purwokerto.

mailto:[email protected]


Keywords : Depression, Spiritual well-being, Family, Cancer, Bereavement Life

PENDAHULUAN

Kanker merupakan pertumbuhan sel

abnormal yang menyerang jaringan di

sekitarnya dan menyebar ke organ tubuh lain

yang letaknya jauh atau metastasis (Corwin,

2009). International Agency For Research on

Cancer (IARC) menemukan bahwa pada

tahun 2012 terdapat 14 juta kasus kanker

baru. Sementara itu, kematian akibat kanker

di seluruh dunia mencapai 8,2 juta kasus

(Kemenkes RI, 2015).

Kemenkes RI, (2015) menjelaskan bahwa

tingkat kejadian kanker di Asia Tenggara

adalah yang tertinggi diantara negara-negara

di seluruh dunia, dan Indonesia masuk di

peringkat teratas mencapai 1,4 per 1.000

penduduk. Berdasarkan data yang diperoleh

dari Sub Bagian Rekam Medik Rumah Sakit

Umum Daerah (RSUD) Prof. Dr. Margono

Soekarjo Purwokerto, ditemukan bahwa pada

tahun 2015 jumlah kunjungan pasien kanker

sebanyak 4262 pasien, tahun 2016 sejumlah

4980 pasien, tahun 2017 sebanyak 6210

pasien dan pada tanggal 01 Januari sampai 21

Maret 2018 sebanyak 1264 pasien (Rekam

Medik RSUD Prof. Dr. Margono Soekarjo

Purwokerto, 2018).

Kemoterapi merupakan cara pengobatan

tumor dengan memberikan obat pembasmi

sel kanker (sitostatika) dari berbagai kelas

yang diminum ataupun yang diinfuskan ke

pembuluh darah untuk menghancurkan sel-

sel kanker (Corwin, 2009; Sjamsuhidajat,

2010).

Efek dari kemoterapi antara lain pada

fisik dan psikologis (Kowalak, J.P., Welsh,

W., & Mayer, 2012). Pada situasi demikian

perlu pengembangan intervensi keperawatan

yang terfokus pada family centered care

sehingga keluarga mampu memberikan

dukungan kepada penderita karena sumber

dukungan yang utama adalah dari keluarga,

baik suami/istri, kakak/adik, anak maupun

orang tua (Plant, H., Moore, S., Richardson,

A., Cornwall, A., Medina, J., & Ream, 2011).

Fungsi dan peran dari seluruh anggota

keluarga akibat merawat anggota keluarga

yang menderita penyakit kronis akan

terpengaruh yang nantinya dapat

menimbulkan masalah psikologis seluruh

anggota keluarga (Renani, H. A., Hajinejad,

F., Idani, E., & Ravanipour, 2014). Masalah

psikologis yang muncul dapat berupa

kecemasan, depresi, marah, dan menangis

(Padila, 2012). Masalah psikologis terjadi

akibat rutinitas pengobatan yang dilakukan

anggota keluarga (Denham, S.A., & Looman,

2010). Untuk mengurangi masalah psikologis

maka diperlukan intervensi keperawatan

yang holistik baik pada pasien maupun pada

keluarga pasien (Rhee, Y.S.Yun, Y.H., Park,

S., Shin, D.O., Lee, K.M., Yoo, H.J., …&


Kim, 2008). Peran perawat sebagai pemberi

asuhan keperawatan sekaligus konselor bagi

keluarga adalah membantu mendampingi

keluarga dalam menggunakan strategi koping

yang efektif untuk mengatasi masalah

psikologis yang dialami (Allender, J.A.,

Rector, C., & Warner, 2010). Penelitian yang

dilakukan Rhee, Y.S.Yun, Y.H., Park, S.,

Shin, D.O., Lee, K.M., Yoo, H.J., …& Kim

(2008) menunjukan bahwa depresi keluarga

dan beban yang dirasakan akan meningkat

saat status fungsional pasien semakin

menurun.

Depresi merupakan gangguan alam

perasaan yang ditandai dengan gangguan

fungsi sosial dan fungsi fisik (Yosep, 2014).

Seseorang yang memiiki tingkat spiritual

yang rendah berpeluang mengalami depresi

yang lebih tinggi (Gallagher, S., phillips,

A.C., Lee, H., & Carroll, 2015). Salah satu

cara untuk menjaga keseimbangan hati dan

pikiran adalah dengan pemenuhan kebutuhan

spiritual (Hook, J. N., Worthington, E. L.,

Davis, D. E., Jennings, D. J., Gartner, A. L.,

& Hook, 2010).

Intervensi keperawatan yang efektif

untuk meningkatkan kesejahteraan spiritual

dalam jangka pendek salah satunya adalah

life review (Ando et al., 2010). Menurut

Butler (1963, dalam Wheeler, 2013) life

review adalah suatu proses melihat masa lalu

individu dan diobservasi nilai terapeutiknya

yang direfleksikan dengan segera pada saat

itu juga dan dijadikan sebagai cara

penyelesaian masalah saat ini. Life review

yang spesifik digunakan untuk keluarga yang

mengalami proses berduka adalah

bereavement life review. Hal yang berbeda

dalam bereavement life review adalah adanya

visualisasi autobiografi menggunakan album

kehidupan dan hanya dilakukan dalam dua

sesi (A’la, M. Z., Yosep, I., & Agustina,

2017)

Pengembangan bereavement life review

belum melihat bagaimana intervensi tersebut

efektif dalam mencegah proses berduka yang

tidak efektif (A’la, M. Z., Yosep, I., &

Agustina, 2017). Penelitian Ando et al.,

(2010) hanya melihat efek bereavement life

review pada keluarga yang mengalami proses

berduka setelah kehilangan anggota

keluarganya karena menderita kanker.

Hasil studi pendahuluan dengan

melakukan wawancara pada 10 keluarga

penderita kanker yang sedang menjalani

kemoterapi di RSUD Prof. Dr Margono

Soekarjo Purwokerto pada 21 Maret 2018

didapatkan 7 keluarga memiliki

kesejahteraan spiritual dan tingkat depresi

yang kurang baik yaitu keluarga mengatakan

merasa sedih dan tidak berdaya melihat

kondisi penderita saat ini. Keluarga sering

bertanya-tanya dalam hati mengapa Tuhan

memberikan penyakit ini pada keluarganya.

Keluarga juga mengatakan takut kehilangan

pasien dan takut anggota keluarga yang lain

menderita penyakit yang sama seperti pasien.

Sedangkan 3 keluarga mengatakan ikhlas

dengan kondisi pasien, keluarga percaya

Tuhan tidak akan memberikan cobaan di luar

kemampuan hambaNya. Dengan penyakit


yang diderita pasien bisa diambil hikmahnya

bahwa kita harus banyak bersyukur atas

nikmat sehat yang Tuhan berikan sampai saat

ini. Keluarga juga akan mendukung

semaksimal mungkin untuk pengobatan

pasien.

Melihat data dan fakta di atas peneliti

ingin meneliti pengaruh bereavement life

review terhadap depresi dan kesejahteraan

spiritual keluarga pasien kanker yang

menjalani kemoterapi. Tujuan penelitian ini

adalah untuk mengetahui pengaruh

Bereavement Life Review terhadap depresi

dan kesejahteraan spiritual keluarga pasien

kanker yang menjalani kemoterapi di RSUD

Prof. Dr. Margono Soekarjo Purwokerto.

METODE

Penelitian ini merupakan penelitian

korelasi dengan desain quasi experiment.

Populasi dalam penelitian ini semua keluarga

penderita kanker yang menjalani kemoterapi

di RSUD Prof. Dr. Margono Soekarjo

Purwokerto sebanyak 410 orang (Rekam

Medis RSUD Dr. Margono Soekarjo

Purwokerto, 2018). Teknik pengambilan

sampel pada kelompok ini menggunakan

teknik purposif sampling dengan jumlah

sampel 80 responden yaitu 40 responden

kelompok intervensi 40 kelompok kontrol.

Analisa data menggunakan T Test.

HASIL

Karakteristik responden dalam penelitian

mencakup umur, lama merawat pasien,

hubungan dengan pasien, jenis kelamin,

pendidikan, pekerjaan, penghasilan, sumber

pembiayaan dan agama. Karakteristik

responden dapat dilihat pada tabel 1. dan

tabel 2. Uji homogenitas antara kelompok

kontrol dan intervensi dilakukan untuk

mengurangi bias dalam penelitian.

Tabel 1. Karakteristik keluarga pasien kanker yang menjalani kemoterapi

Karakteristik

Kelompok Intervensi (N=40) Kelompok Kontrol

(N=40) p

Mean

(SD) Min-Max 95% CI

Mean

(SD)

Min-

Max 95% CI

Umur 44.55

(12.040) 23 – 68

40.70-

48.40

45.65

(11.604) 21 - 76 41.94- 49.36 0.5021

Lama merawat pasien

kanker (dalam bulan) 20.56

(12.475) 1 – 60

16.57-

24.55

26.10

(11.149) 8 - 48 22.53- 29.67 0.6991

Independent sample t test

Berdasarkan tabel 1 hasil menunjukkan bahwa tidak ada karakteristik responden antara

kelompok intervensi dan kontrol berbeda secara signifikan (p>0,05).

No. Karakteristik

Kelompok

Intervensi Kelompok Kontrol

p

F % f %


Tabel 2. Karakteristik keluarga pasien kanker yang menjalani kemoterapi Independent sample t test

Berdasarkan tabel 2 hasil menunjukkan bahwa

tidak ada karakteristik responden antara

kelompok intervensi dan kontrol berbeda

secara signifikan (p>0,05).

Tabel 3

Pengaruh bereavement life review terhadap

kejadian depresi pada kelompok

intervensi Variabel Mean t 95% CI p value

Pre test

kelompok

intervensi

26,23

(7,698)

8,385 4,970 –

8,130 0,0001

Post test

kelompok

intervensi

19,68

(7,367)

1Dependent sample t test

Uji analisis kejadian depresi pada

kelompok intervensi diperoleh p value 0.000

< α 0.05 artinya terdapat pengaruh

bereavement life review terhadap kejadian

depresi keluarga pasien kanker yang

menjalani kemoterapi.

Tabel 4


kesejahteraan spiritual pada kelompok

intervensi

Variabel Mean

(SD) t 95% CI p value

Pre test

kelompok

intervensi

72,03

(12,230) -9,560

(-17,477)

– (-

11,373)

0,000

1 Hubungan dengan pasien

Orang tua (ayah/ ibu)

Pasangan (suami/ istri)

Anak kandung

2

21

17

5,0

52,5

42,5

4

21

15

10,0

52,5

37,5

0.8441

Jumlah 40 100.0 40 100.0

2 Jenis kelamin

Laki-laki

Perempuan

22

18

55.0

45.0

24

16

60.0

40.0

0.3971

Jumlah 40 100.0 40 100.0

3 Pendidikan

Pendidikan dasar 26 65.0 20 50.0

Pendidikan menengah (SMP, SMA/K) 10 25.0 18 45.0 0.5741

Pendidikan tinggi 4 10.0 2 5.0

Jumlah 40 100.0 40 100.0

4 Pekerjaan

Wiraswasta 8 20.0 11 27.5

PNS 4 10.0 3 7.5

Swasta 7 17.5 15 37.5 0.2471

IRT 9 22.5 5 12.5

Petani 12 30.0 6 15.0

Jumlah 40 100.0 40 100.0

5 Penghasilan

Rendah 29 72.5 24 60.0

Sedang 3 7.5 9 22.5 0.3431

Tinggi 2 5.0 4 10.0

Sangat Tinggi 6 15.0 3 7.5

Jumlah 40 100.0 40 100.0

6 Sumber pembiayaan

BPJS 36 90.0 34 85.0 0.1801

Biaya Sendiri 4 10.0 6 15.0

Jumlah 40 100.0 40 100.0

7 Agama

Islam 40 100.0 40 100.0

Jumlah 40 100.0 40 100.0


Post test

kelompok

intervensi

86,45

(12,714)


Uji analisis kesejahteraan spiritual pada

kelompok intervensi diperoleh 0.000 <

0.05, artinya terdapat pengaruh bereavement

life review terhadap kesejahteraan spiritual

keluarga pasien kanker yang menjalani

kemoterapi.

Tabel 5


kejadian depresi pada kelompok kontrol Variabel Mean t 95% CI p value

Pre test

kelompok

kontrol

27,38

(9,11

4) 2,240

0,318 –

6,232 0,031

Post test

kelompok

kontrol

24,10

(6,45

6) 1Dependent sample t test

Uji analisis kejadian depresi pada

kelompok kontrol diperoleh p value 0.031 <

0,05 artinya terdapat perubahan skor

kejadian depresi keluarga pasien kanker yang

menjalani kemoterapi.

Tabel 6



kontrol Variabel Mean

(SD)

t 95% CI p

value

Pre test

kelompok

kontrol

74,63

(15,41)

-2,47 (-4,042) -

(-0,408) 0,018

Post test

kelompok

kontrol

76,85

(11,74)


Berdasarkan uji analisis data


control menggunakan t dependen diperoleh p

value 0.018 < 0.05, artinya terdapat

perubahan skor kesejahteraan spiritual

keluarga pasien kanker yang menjalani

kemoterapi.

Tabel 7

Perbedaan kejadian depresi keluarga

pasien kemoterapi sebelum kelompok

intervensi diberikan perlakuan Variabel Mean

(SD)

t 95% CI p value

Pre test

kelompok

intervensi

26,23

(7,698)

-0,610 (-4,905) –

2,605 0,544

Pre test

kelompok

kontrol

27,38

(9,114)

1Independent sample t test

Analisis data pretest kejadian depresi

diperoleh p value 0.544 > 0,05, artinya

tidak terdapat perbedaan kejadian depresi

keluarga pasien kemoterapi pada kelompok

intervensi dan kelompok kontrol sebelum

kelompok intervensi diberikan tindakan


Tabel 8

Perbedaan kejadian depresi keluarga

pasien kemoterapi setelah kelompok

intervensi diberikan perlakuan Variabel Mean

(SD)

t 95% CI p

value

Post test

kelompok

intervensi

19,68

(7,367)

-2,857 (-7,509) -

(-1,341) 0,005

Post test

kelompok

control

24,10

(6,456)

1Independent sample t test Analisis data posttest kejadian depresi

diperoleh p value 0,005 < 0,05, artinya

terdapat perbedaan kejadian depresi keluarga

pasien kemoterapi pada kelompok intervensi

dan kelompok kontrol setelah kelompok

intervensi diberikan tindakan bereavement

life review

Tabel 9


Perbedaan kesejahteraan spiritual

keluarga pasien kemoterapi sebelum

kelompok intervensi diberikan perlakuan

Variabel Mean

(SD)

t 95% CI p

value

Pre test

kelompok

intervensi

72,03

(12,23)

-836 (-8,795)

– 3,595 0,406

Pre test

kelompok

kontrol

74,63

(15,41)


Analisis data pretest kesejahteraan

spiritual diperoleh p value 0.406 > 0,05,

artinya tidak terdapat perbedaan

kesejahteraan spiritual keluarga pasien

kemoterapi pada kelompok intervensi dan

kelompok kontrol sebelum kelompok

intervensi diberikan tindakan bereavement

life review

Tabel 10

Perbedaan kesejahteraan spiritual

keluarga pasien kemoterapi setelah

kelompok intervensi diberikan perlakuan Variabel Mean

(SD)

t 95% CI p

value

Post test

kelompok

intervensi

86,45

(12,714

) 3,507

4,151 –

15,049 0,001

Post test

kelompok

kontrol

76,85

(11749)


Analisis data posttest kesejahteraan

spiritual diperoleh p value 0.001 < 0,05,

artinya terdapat perbedaan kesejahteraan

spiritual keluarga pasien kemoterapi pada

kelompok intervensi dan kelompok kontrol

setelah kelompok intervensi diberikan

tindakan bereavement life review.

PEMBAHASAN

1. Pengaruh bereavement life review

terhadap kejadian depresi pada

kelompok intervensi

Hasil uji statistik menunjukan bahwa

nilai p value 0.000, Sejalan dengan penelitian

Ando, et al. (2010) yang menyebutkan

bahwa bereavement life review efektif dalam

menurunkan kejadian depresi pada keluarga

pasien kanker stadium terminal.

Perbedaan rerata kejadian depresi ada

kaitannya dengan pengaruh pemberian

tindakan bereavement life review. Ando, et

al., (2013) dalam penelitiannya membuktikan

bahwa bereavement life review dapat

diaplikasikan pada keluarga pasien kanker.

Kanker adalah penyakit terminal dan

membutuhkan perawatan paliatif yang

komperhensif baik pada pasien maupun

keluarga. Bereavement life review merupakan

intervensi keperawatan yang terfokus pada

pendekatan dan pendampingan keluarga

(A’la, M. Z., Yosep, I., & Agustina, 2017)

Life review tidak hanya efektif digunakan

untuk mengatasi depresi pada lansia dan

pasien dengan penyakit kronis tetapi juga

dapat digunakan pada keluarga yang

mengalami proses berduka (Ando et al.,

2010). Hasil wawancara dengan keluarga

pasien kanker, sebagian besar mengatakan

bahwa musibah yang terjadi saat ini

merupakan teguran dari Alloh SWT supaya

memperbaiki kehidupan yang selanjutnya

dan banyak bersyukur dengan segala nikmat

yang sudah diberikan.



terhadap kesejahteraan spiritual pada

kelompok intervensi


nilai p value 0.000. Sejalan dengan penelitian

Ando, et al (2010) yang menyebutkan bahwa

bereavement life review efektif dalam

menurunkan kejadian depresi pada keluarga

pasien kanker stadium terminal.

Ando, et al. (2013) mengatakan bahwa

bereavement life review juga efektif di

terapkan pada keluarga pasien kronis selain

keluarga pasien kanker. Sejalan dengan

penelitian A’la, M. Z., Yosep, I., & Agustina,

(2017) membuktikan bahwa bereavement life

review efektif meningkatkan kesejahteraan

spiritual pada keluarga pasien stroke. Prosesn

life review mengenang kejadian-kejadian

masa lalu, mengekspresikan perasaan dengan

melepaskan emosi berupa emosi dan

intelektual sehingga data digunakan untuk

menyelesaikan dan menerima masalah saat

ini (Keliat, B.A., Pawiro, & Susanti, 2012).

Rosululloh SAW yang diriwayatkan oleh

Ahmad dapat diambil suatu hikmahnya

bahwasannya orang-orang yang cerdas itu

adalah orang yang senantiasa mempelajari

dirinya dan menimbang perbuatan yang telah

dilakukan. Sesuai dengan perintah Alloh

SWT dalam QS. Al-Hasyr :18 menjelaskan

“Hai orang-orang yang berima, bertaqwalah

kepada Alloh dan hendaklah setiap diri

memperhatikan apa yang tela diperbuatnya

untuk hari esok (akhirat), dan bertaqalah

kepada Alloh, sesungguhnya Alloh Maha

mengetahui apa yang kamu lakukan”.

Kesejahteraan spiritual merupakan rasa

keharmonisan, saling kedekatan antara diri

dengan oran lain, alam dan kepada Tuhan.

Kondisi spiritual yang sehat terlihat dari

hadirnya ikhlas (ridha dan senang menerima

pengaturan dari Alloh), tauhid (mengesakan

Alloh), tawakal (berserah diri sepenuhnya

kepada Alloh) (Yusuf, A., Nihayati, H.E., &

Iswari, 2016).


terhadap kejadian depresi pada

kelompok kontrol


nilai p value 0.031. Perbedaan rerata kejadian

depresi pada kelompok kontrol tidak sebesar

pada kelompok intervensi karena pada

kelompok kontrol tidak diberikan perlakuan

apapun.

Penurunan kejadian depresi tersebut

kemungkinan dapat disebabkan karena latar

belakang agama yang sama dengan

kelompok intervensi. Perkembangan agama

sejajar dengan perkembangan spiritual

seseorang (Kozier, B., Er, G., & Berman,

2011). Terpenuhinya spiritualitas seseorang

mampu mengurangi, mencegah dan

melindungi diri dari ganguan kejiwaan

seperti depresi, stress, dan mengurangi

penderitaan serta meningkatkan proses

adaptasi dan penyembuhan (Yosep, 2014).



terhadap kesejahteraan spiritual pada

kelompok kontrol


nilai p value 0.018. Penurunan rerata


kontrol tidak sebesar pada kelompok

intervensi karena tidak diberikan perlakuan

apapun.

Hal tersebut dapat disebabkan karena

faktor agama. Prinsip Islam memiliki

keyakinan kepada Tuhan merupakan

kebutuhan utama bagi seseorang (Ibrahim, F.

A & Dykeman, 2011). Nawawi (2011)

menjelaskan bahwa sejahtera dalam Islam

identik dengan bahagia. Bahagia tersebut

merupakan terjemahan dari assa’adah.

Seperti firman Alloh dalam surat Huud ayat

108 yang artinya:”Adapun orang-orang yang

berbahagia, maka tempatnya di dalam surga,

mereka kekal didalamnya selama ada langit

dan bumi, kecuali jika Tuhanmu

menghendaki (yang lain): sebagai karunia

yang tiada putus-putusnya.

Seseorang yang memiliki kesejahteraan

spiritual yang baik cukup merasa bahagia dan

bersyukur terhadap ketentuan Alloh, tidak

mengeluh dan senantiasa mengingat Alloh

dalam berbagai kondisi (Nawawi, 2011).

Sejalan dengan teori Yosep (2014) yang

menyatakan bahwa seseorang yang

menghadapi proses kehilangan harus sabar,

berserah diri, menerima dan

mengembalikannya kepada Alloh sehingga

mencapai fase peneriman (acceptance).

5. Perbedaan kejadian depresi keluarga

pasien kemoterapi sebelum kelompok




nilai p value 0.544. Hal ini dapat terjadi

karena faktor-faktor yang mempengaruhi

depresi seperti umur, faktor ekonomi,

pendidikan dan lama pengobatan sudah

dikontrol sehingga data bersifat homogen.

Umur mempengaruhi kondisi psikologis

seseoarang, pada perkembangan dewasa

seseorang mengerti tentang kondisi penyakit

pasangannya atau keluarganya. Umur

berhubungan dengan pengalaman seseorang

dalam menghadapi berbagai jenis stresor

(Stuart dan Laraia, 2005). Notoatmodjo S

(2010) yang menyatakan bahwa tingkat

pendidikan memengaruhi pola pikir

seseorang dalam mengambil keputusan.

Mariyam & Kurniawan (2008) yang

menyatakan bahwa bahwa faktor ekonomi

adalah salah satu faktor yang mempengaruhi

tingkat depresi seseorang. Selain itu Teodora,

B. A., Ianovici, N., Bancilla (2012) yang

menyatakan bahwa depresi merupakan

kontribusi dari lamanya merawat pasien,

lamanya waktu penanganan dan perawatan

berulang pada pasien

6. Perbedaan kejadian depresi keluarga

pasien kemoterapi setelah kelompok






Ando, et al. (2010), bereavement life review

memengaruhi tingkat depresi keluarga pasien

dengan penyakit kanker. Depresi dapat

terjadi karena faktor status ekonomi keluarga

yang sebagian besar berpendapatan rendah.

Sesuai dengan hasil wawancara, sebagian

besar keluarga tetap banyak mengeluarkan

biaya, walaupun biaya kemoterapi sudah

ditanggung oleh Badan Penyelenggara

Jaminan Kesehatan (BPJS) namun biaya

operasional lain tetap dirasa besar. Keluarga

juga meninggalkan pekerjaan saat mengantar

pasien untuk kemoterapi, sehingga

pendapatan keluarga menurun. Sesuai dengan

teori Yosep (2014) yang menyatakan bahwa

stresor psikososial dapat terjadi karena

masalah keuangan dan pekerjaan.

Kejadian depresi keluarga juga dapat

terjadi karena lamanya merawat pasien

sebagaimana dinyatakan oleh Teodora, B. A.,

Ianovici, N., Bancilla, (2012) bahwa depresi

merupakan kontribusi dari lamanya merawat

pasien, lamanya waktu penanganan dan

perawatan berulang pada pasien. Pada

umumnya, tingkat depresi akan lebih rendah

ketika merawat pasien yang sudah semakin

lama terdiagnosis kanker (Mehnert, A.,

Lehmann, C., Graefen, M., Huland, H.,

Koch, 2010). Bereavement life review

berdasarkan pada satu prinsip bahwa dengan

mengenang dan mengevaluasi masa lalu

dapat menurunkan depresi. Melalui terapi ini

keluarga diajarkan atau dilatih untuk

mengeksplorasi pengalaman hidup masa lalu

dalam bentuk informasi yang lebih positif

(Ho, 2012).

7. Perbedaan kesejahteraan spiritual

keluarga pasien kemoterapi sebelum

kelompok intervensi diberikan

tindakan bereavement life review


nilai p value 0.183. Hal ini dapat terjadi

karena faktor-faktor yang mempengaruhi

kesejahteraan spiritual seperti umur, keluarga

dan agama sudah bersifat homogen.

Dalam penelitian ini keluarga memiliki

latar belakang agama yang sama yaitu agama

Islam. Perkembangan agama dapat sejajar

dengan perkembangan spiritual.

Perkembangan agama sering menjadi

pondasi dan meningkatkan spiritualitas

(Kozier, B., & Berman, 2011). Spiritualitas

juga dipengaruhi oleh keluarga karena

keluarga mempengaruhi ikatan emosional

dan interaksi yang dapat meningkatkan

pemenuhan kebutuhan spiritualitas (Asmadi,

2008).

8. Perbedaan kesejahteraan spiritual

keluarga pasien kemoterapi setelah

kelompok intervensi diberikan

tindakan bereavement life review



Ando, at al. (2010) dan Ando, et al. (2013),

Bereavement life review memengaruhi

spiritual keluarga pasien dengan penyakit

kanker. Setiap tahap bereavement life review


dari tahap rekonstektualisasi, memaafkan

terhadap diri individu dan proses refleksi

akan mempengaruhi aspek kesejahteraan

spiritual baik Religious Well Being (RWB)

meupun Existential Well Being (EWB),

sehingga keluarga mampu memberikan

makna mendalam teradap pasien yang sedang

dirawat (Paloutzian, R.F., Bufford, R.K., &

Wildman, 2012; A’la, M. Z., Yosep, I., &

Agustina, 2017).

Kesejahteraan spiritual juga dipengaruhi

oleh umur (Ando, et al., 2010). Hasil

penelitian sejalan dengan pendapat dari

Jalaludin (2015) bahwa tingkat spiritualitas

seseorang, tidak lepas kaitannya dengan

kondisi dan situasi seseorang, termasuk di

dalamnya tingkat usia. Usia terkait erat

dengan pertumbuhan material dan

perkembangan spiritual.

SIMPULAN

Hasil penelitian menunjukan terdapat

pengaruh bereavement life review terhadap

kejadian depresi dan kesejahteraan spiritual

keluarga pasien kemoterapi serta terdapat

perbedaan kejadian depresi dan kesejahteraan

spiritual keluarga pasien kemoterapi pada

kelompok intervensi dan kelompok kontrol

setelah kelompok intervensi diberikan

tindakan bereavement life review. Saran

untuk penelitian selanjutnya adalah meneliti

terkait intervensi bereavement life review

dalam dampaknya terhadap kecemasan dan

kualitas hidup keluarga pasien kemoterapi.

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214 JKP - Volume 5 Nomor 2 Agustus 2017

Pengaruh Bereavement Life Review terhadap Kesejahteraan Spiritual pada Keluarga Pasien Stroke

Muhamad Zulfatul A’la1, Iyus Yosep2, Hana R. Agustina2

1PSIK, Universitas Jember, 2Fakultas Keperawatan Universitas PadjadjaranEmail: [email protected]

Abstrak

Spiritualitas adalah faktor protektif dalam proses berduka pada keluarga pasien kronis. Bereavement life review adalah salah satu intervensi dalam penguatan spiritual keluarga pasien penyakit kanker. Stroke dan kanker adalah penyakit kronis. Tujuan penelitian ini adalah mengetahui pengaruh bereavement life review pada kesejahteraan spiritual keluarga pasien stroke. Desain penelitian ini adalah quasi-eksperimental dengan pretest posttest control group. Sampel yang digunakan adalah salah satu keluarga pasien stroke yang merawat pasien di rumah sakit. Sehingga didapatkan sampel sebanyak 28 responden dengan 14 kelompok kontrol dan 14 kelompok intervensi. Pengambilan sampel dilakukan dengan menggunakan consecutive sampling. Kelompok intervensi mendapatkan bereavement life review dengan dua sesi yang dilakukan oleh spesialis keperawatan jiwa. Kesejahteraan spiritual diukur menggunakan instrumen SWBS (spiritual well-being scale). Analisis data menggunakan dependent t-test, Mann Whitney dan Wilcoxon. Uji homogenitas memerlihatkan tidak satupun karekteristik responden antara kelompok intervensi dan kontrol berbeda secara signifikan (p > 0,05). Hasil penelitian menunjukkan adanya perbedaan skor rerata postest kesejahteraan spiritual pada kelompok kontrol dengan kelompok intervensi (98,71 ± 3,65 dan 106,5 ± 1,83; p = 0,000). Terdapat perbedaan skor rerata kesejahteraan spiritual pada pretest dengan posttest pada kelompok intervensi (99,07 ± 2,95 dan 106,5 ± 1,83; p = 0,001). Proses bereavement life review merupakan proses peningkatan spiritual melalui proses rekontekstualisasi, memaafkan terhadap diri, dan refleksi yang membentuk penguatan koping sehingga muncul pemaknaan terhadap diri sendiri. Dapat disimpulkan bereavement life review berpengaruh positif terhadap peningkatan kesejahteraan spiritual keluarga pasien stroke. Bereavement life review dapat digunakan sebagai intervensi perawatan pasien stroke dan keluarga. Saran untuk penelitian selanjutnya adalah melihat pengaruh bereavement life review untuk penyakit kronis yang lain, seperti diabetes melitus atau kanker. Selain itu, indikator psikologis pasien dan keluarga sebagai output intervensi perlu dikaji lebih mendalam.

Kata kunci: Bereavement life review, keluarga pasien stroke, keperawatan spiritual, kesejahateraan paliatif.

Influence of Bereavement Life Review on Spiritual Well-Being of Stroke Family Caregiver

Abstract

Spirituality is a protective factor of grieving process in patient and family with chronic illness. Bereavement life review is one of the interventions which is enhancing the spiritual well-being in cancer diseases. Cancer and Stroke are chronic diseases. The purpose of this study was to determine the effect of bereavement life review of the spiritual well-being of stroke family. Quasi-experimental with pretest posttest control group used in study. Sample in this study are stroke family who caring the stroke patient in hospital which is 28 respondents. The intervention group was given bereavement life review with two sessions which given by expert in psychiatric nursing. Spiritual well-being was measured by SWBS (spiritual well-being scale). Data analysis were using a dependent t-test, Mann Whitney and Wilcoxon. Homogenity of respondent characteristics showed that it have not correlation between control and intervention group (p > 0,05). The study showed the difference in the mean posttest scores of spiritual well-being of the control group with the intervention group (98.71 ± 3.65 and 106.5 ± 1.83, p = 0.000). There were differences in the mean scores pretest to posttest spiritual well-being in the intervention group (99.07 ± 2.95 and 106.5 ± 1.83, p = 0.001). Bereavement life review is a process of enhancing spirituality through recontextualization, forgiveness, and reflection proccess that strengthening coping process. Bereavement life review has positive effect on the spiritual well-being of the stroke family which can be considered as an intervention in the treatment of stroke patients and families. Further study know the effect of bereavement life review in other chronic diseases patient, like hypertension or diabetes mellitus. Moreover, other psychological outcome for this intervention needs to be explored.

Keywords: Bereavement life review, palliative care, spiritual well-being, stroke family.

215JKP - Volume 5 Nomor 2 Agustus 2017

Pendahuluan

Perkembangan keperawatan paliatif kekinian berkembang pesat dengan banyaknya penyakit terminal dengan kebutuhan perawatan end-of-life (Morton & Fontaine, 2005). Keperawatan paliatif juga mengarahkan terhadap perawatan yang berfokus terhadap keluarga. Keluarga dianggap sebagai elemen penting dalam proses perawatan terhadap pasien dalam keadaan terminal untuk menuju kematian yang damai. Selain penyakit kanker, penyakit stroke merupakan permasalahan utama dalam perawatan paliatif (Stevens, Payne, Burton, Addington-Hall, & Jones, 2007).

Stroke adalah salah satu masalah kesehatan yang serius. Tahun 2015, World Health Organization (WHO) memperkirakan terdapat 20 juta orang yang akan meninggal karena stroke. Proporsi kematian stroke adalah 15,4% pada tahun 2007. Satu dari tujuh orang meninggal karena penyakit stroke (Kementerian Kesehatan RI, 2012).

Stroke sering terjadi mendadak dan tidak terprediksi (Iosif, Papathanasiou, Staboulis, & Gouliamos, 2012). Hal ini membawa dampak yang berat bagi keluarga, terutama pasangan hidupnya (Wallace & Christianna, 2008). Seperti halnya penelitian Wilz dan Kalytta (2008) yang dilakukan pada 114 pasangan pasien yang mengalami stroke, prevalensi kejadian kecemasan keluarga mencapai 27,6%–28,9%. Hasil penelitian Daulay, Setiawan, & Febriani (2014) secara kualitatif juga menunujukkan bahwa keluarga dengan pasien stroke mengalami masalah fisik, psikologis dan sosial yang berat. Apabila tidak dicegah, kondisi ini akan mengakibatkan permasalahan yang lebih serius, antara lain munculnya post traumatic distress syndrome (PTSD) dan penyakit kardiovaskular akibat psikologis yang berlebihan.

Kecemasan adalah salah satu faktor penyebab timbulnya distress spiritual keluarga dan pasien stroke (Crowe et al., 2015). Distress spiritual juga memberikan dampak yang buruk bagi keluarga pasien dengan penyakit kronis. Distress spiritual dapat menurunkan dukungan keluarga, sehingga memengaruhi kualitas hidup pasien dengan penyakit kronis (Clarke, 2009).

Masalah spiritual merupakan masalah

mandiri keperawatan dan diselesaikan dengan intervensi mandiri (Willey, 2013). Dukungan spiritual tidak hanya terbatas dalam praktik keagamaan seperti halnya membaca kitab suci maupun berdoa, akan tetapi dukungan spiritual juga mengacu pada menenangkan, menghibur, mendengarkan, menghormati privasi, serta membantu mencari makna dan tujuan hidup keluarga. Depresi adalah salah satu faktor yang memengaruhi spiritual (Strada-Russo, 2006).

Intervensi dalam peningkatan spiritual keluarga pasien stroke merupakan hal yang perlu dikembangkan. Life review adalah sebuah bentuk intervensi yang efektif dalam upaya peningkatan kesejahteraan spiritual. Beberapa penelitian menyebutkan bahwa life review efektif dalam mendorong proses berduka pasien yang efektif. Seperti dalam penelitian Ando et al. (2010) menyebutkan bahwa life review jangka pendek efektif dalam peningkatan kesejahteraan spiritual pasien dengan penyakit terminal, dan menurunkan distress psikososial dan mengantarkan ke kematian yang sejahtera.

Bereavement life review merupakan pengembangan life review dan spesifik digunakan untuk keluarga yang mengalami proses berduka. Hal yang ditambahkan dalam bereavement life review adalah adanya visualisasi autobiografi menggunakan album kehidupan. Visualisasi tersebut diharapkan mampu menjadikan pasien lebih mampu melihat kehidupannya bernilai. Kehidupan yang bernilai mampu meningkatkan kesehatan mental keluarga dan dapat meningkatkan kualitas perawatan terhadap pasien (Ando, Morita, & Miyashita, 2010).

Pengembangan bereavement life review belum melihat bagaimana intervensi tersebut efektif dalam mencegah proses berduka yang tidak efektif. Penelitian Ando, Morita, dan Miyashita (2010) hanya melihat efek bereavement life review setelah keluarga melalui proses berduka pada pasien dengan penyakit kanker. Berduka yang tidak efektif bisa muncul akibat persiapan berduka yang buruk (Strada-Russo, 2006). Persiapan yang baik adalah persiapan pada keluarga yang akan mengalami proses berduka akibat kematian yang diakibatkan oleh penyakit stroke (Iosif et al., 2012). Persiapan yang baik dapat dilakukan melalui upaya peningkatan

Muhamad Zulfatul A’la : Pengaruh Bereavement Life Review terhadap Kesejahteraan Spiritual


spiritual dan penurunan kecemasan. Salah satu intervensi keperawatan yang berpotensi meningkatkan komponen tersebut adalah reminiscence therapy (Stuart, 2013). Bereavement life review merupakan pengembangan dari reminiscence therapy (Ando, Sakaguchi, Shiihara, & Izuhara, 2013).

Bereavement life review merupakan intervensi yang prosesnya adalah dengan mencari dan menggali makna hidup individu sehingga makna spiritualitas pasien atau keluarga dapat meningkat, namun hanya pada pasien kanker. Bereavement life review juga merupakan intervensi yang mudah, cepat, dan dapat dilakukan oleh perawat yang terlatih (Ando et al., 2013). Namun, hasil telaah literatur, belum menemukan penelitian mengenai efektifitas bereavement life review yang spesifik untuk keluarga pasien stroke.

Melihat data dan fakta di atas peneliti ingin melihat efektifitas bereavement life review terhadap kesejahteraan spiritual keluarga pasien stroke. Tujuan penelitian ini adalah untuk mengetahui pengaruh bereavement life review terhadap kesejahteraan spiritual keluarga pasien stroke di RSD dr. Soebandi Jember.

Metode Penelitian

Penelitian ini merupakan jenis penelitian quasi eksperimental yang menggunakan pendekatan kuantitatif. Penelitian ini terdiri dari dua variabel, yaitu satu variabel bebas dan satu variabel tergantung. Variabel terikat penelitian ini adalah tingkat kesejahteraan spiritual yang diukur menggunakan kuesioner SWBS (spiritual well-being scale) pada keluarga pasien dengan stroke (Paloutzian, Bufford, & Wildman, 2012). Sedangkan variabel bebas pada penelitian ini adalah intervensi bereavement life review. Intervensi bereavement life review dilakukan oleh seorang ners spesialis keperawatan jiwa atau ners generalis dengan sertifikasi life review dan dilakukan di ruang tertutup untuk menjaga privasi responden. Intervensi bereavement life review dilakukan selama dua sesi. Sesi pertama adalah sesi penggalian dengan beberapa pertanyaan yang diadopsi

dari penelitian Ando, Morita, dan Miyashita (2010) yang terdiri dari: 1) Apa yang menurut Anda paling terpenting dalam kehidupan Anda, berikan alasannya?, 2) Hal apa yang menurut Anda yang paling berkesan dari pasien sampai saat ini?, 3) Sampai saat ini, ketika merawat pasien apa yang paling berkesan menurut Anda?, 4) Hal apa yang menjadikan diri Anda bangga dalam merawat pasien sampai saat ini?, 5) Hal apa yang berperan terhadap kehidupan Anda?, 6) Apa yang Anda banggakan di hidup Anda?. Hasil wawancara dengan pasien direkam. Sesi pertama dilakukan selama kurang lebih satu jam, mulai dari prainteraksi sampai terminasi dalam tahapan komunikasi terapeutik. Setelah wawancara sesi pertama selesai, terapis mentranskripsi hasil wawancara dan peneliti membuat suatu mini album, kata kunci dari pertanyaan digambarkan di dalam album dan diberikan kepada pasien. Sesi kedua dilakukan satu minggu setelah sesi pertama. Sesi kedua peneliti dan terapis mendampingi keluarga untuk melihat album yang telah dibuat peneliti. Sesi kedua dilakukan kurang lebih satu jam. Setiap responden melewati sesi pertama dan kedua sebanyak satu kali.

Penelitian ini dilakukan di Rumah Sakit Daerah (RSD) Subandi, Kabupaten Jember di Ruang Melati (Ruang Neurologi). RSD dr. Subandi merupakan rumah sakit rujukan wilayah timur Propinsi Jawa Timur. Penelitian ini dilakukan selama 3 bulan, bulan April sampai Juni 2014.

Populasi yang ditargetkan pada penelitian ini adalah keluarga pada pasien dengan stroke yang dirawat di RSD Soebandi Jember. Sampel dipilih dengan cara consecutive sampling, yaitu jumlah sampel yang dipilih dari urutan pasien yang dirawat. Penentuan sampel menggunakan kriteria inklusi: 1) keluarga pada pasien dengan diagnosis stroke oleh dokter yang dirawat lebih dari dua hari, 2) keluarga adalah orang yang terdekat yaitu suami/istri pasien, atau anak kandung pasien atau adik/kakak kandung pasien, 3) keluarga yang bisa membaca dan menulis, dan 4) keluarga yang tidak mengalami gangguan jiwa. Sedangkan kriteria eksklusi adalah keluarga yang tidak mengikuti program sampai selesai. Jumlah sampel yang dipakai berdasarkan penelitian Ando, Minota,



Shibukawa, dan Kira (2012). Perhitungan jumlah sampel menggunakan rumus power analysis, dengan rumus sebagai berikut: Keterangan :

2

21

)(2

−+

=

XX

SBZZn

βα

n : Besar sampelS : Simpang baku x1-x2 : Perbedaan rerata kesejahteraan spiritual antara kelompok eksperimen dan kelompok kontrol.Zα : kesalahan tipe I (5% =1,96)Zβ : kesalahan tipe II (10% = 0,84 )

Berdasar pada penelitian yang dilakukan Ando, Minota, Shibukawa, & Kira (2012) perbedaan rata-rata kesejahteraaan spiritual antara kelompok intervensi dan kelompok kontrol adalah 10, simpangan baku (SB) adalah 8,3. kesalahan tipe I 5% hipotesis satu arah (Zα=1,96), dan kesalahan tipe II sebesar 10% (Zβ = 0,84) didapatkan jumlah sampel sebesar 12.Untuk mengantisipasi subjek dengan drop out, loss to follow up, atau subjek yang tidak taat, dilakukan koreksi besar sampel dengan rumus (Sugiyono, 2009) :an’ = n/(1-f)

keterangan :n = 12f = perkiraan proporsi subjek yang DO = 10%

Dengan menggunakan rumus koreksi besar sampel, didapatkan hasil besar sampel sebanyak 13,3 dan dibulatkan menjadi 14 orang responden. Sehingga sampel yang digunakan adalah total 28 orang dengan 14 orang kelompok intervensi dan 14 orang kelompok

Responden kelompok kontrol dan intervensi akan mendapatkan pre-test untuk melihat kesejahteraan spiritual menggunakan spiritual Well Being Scale (SWBS). SWBS terdiri dari dua subskala, Religion well-being (RWB) dan Exstensional Well-being (EWB). Masing-masing subskala terdiri dari 10 item pernyataan. Total item pernyataan SWBS sebanyak 20 item. Subskala RWB terdapat pada item pernyataan nomor 1, 3, 5, 7, 9, 11, 13, 15, 17, dan 19. Subskala EWB terdapat

pada item 2, 4, 6, 8, 10, 12, 14, 16, 18, dan 20. Pernyataan unfavourabel terdiri dari sembilan item yaitu item nomor 1, 2, 5, 6, 9, 12, 13, 16 dan 18. Setiap item pernyataan memiliki nilai 1–6. Penilaian untuk pernyataan favourable adalah: sangat tidak setuju (STS) dinilai 1, Cukup tidak setuju (CTS) dinilai 2, tidak setuju (TS) dinilai 3, setuju (S) dinilai 4, cukup setuju (CS) dinilai 5, dan sangat setuju (SS) dinilai 6. Sedangkan penilaian untuk unfavourable adalah sebaliknya. Hasil akhir adalah skor kesejahteraan spiritual, dimana total skor kesejahteraan spiritual antara 20–120, semakin tinggi skor mencerminkan semakin tinggi tingkat kesejahteraan spiritual responden. SWBS telah banyak dikembangkan dalam beberapa bahasa antara lain, Indonesia, Malaysia, spanyol, Portugis, China dan Arab. Masing-masing negara telah menguji validitas dari SWBS ini. Hasil penulusuran literatur didapatkan tiga bahasa yang telah di validasi terjemahan SWBS yaitu Arab, Inggris dan Malaysia, dengan nilai r > 0,80 (Imam, Noor, Abdul, Nor, & Jusoh, 2009; Musa & Pevalin, 2012). Kelompok intervensi setelah pre-test mendapatkan intervensi bereavement life review satu kali dalam dua sesi selama satu minggu. Setelah sesi kedua, responden langsung mendapatkan postest dengan kuesioner yang sama. sedangkan kelompok kontrol mendapatkan intervensi bereavement life review setelah diberikan posttest. Jarak antara pretest dan posttest pada kelompok kontrol adalah sama dengan kelompok intervensi, yaitu satu minggu. .

Hasil Penelitian

Karakteristik responden dalam penelitian ini mencakup umur, jenis kelamin, status pernikahan, pendidikan, riwayat pekerjaan, pendapatan per bulan, hubungan dengan pasien dan lama menunggu, karakteristik responden tersebut merupakan faktor pengganggu dalam efektifitas pemberian berevement life review (Ando, Sakaguchi, et al., 2013). Uji homogenitas antara kelompok kontrol dan intervensi juga diperlukan untuk mengurangi bias dalam penelitian (Polit & Beck, 2009). Karakteristik responden terlihat pada tabel 1. Tabel. 1 dan tabel 2 menunjukkan



Tabel 1 Distribusi Frekuensi pada Karekteristik Jenis Kelamin, Status Pernikahan, Pendidikan, Riwayat Pekerjaan, Pendapatan per Bulan, Hubungan dengan Pasien dan Uji Homogentitas pada Kelompok Intervensi dan Kelompok Kontrol (n = 28)

KarekteristikKelompok Kontrol (n = 14) Kelompok Intervensi (n = 14)

Nilai pJumlah % Jumlah %

Jenis Kelamin Laki-laki 2 14,3 3 21,41,0001

Perempuan 12 85,7 11 78,6

Status Pernikahan

Kawin 13 92,9 9 64,30,1671

Tidak Kawin 1 7,1 5 35,7

Pendidikan

Tidak Sekolah

0 0,0 0 0,0

0,8212

SD/Sederajat 1 7,1 2 14,3SMP/Sederajat

3 21,4 3 21,4

SLTA/Sederajat

9 64,3 7 50,0

Diploma/lebih tinggi

1 7,1 2 14,3

Riwayat Pekerjaan

Tidak Bekerja 12 85,7 8 57,1

0,0682Swasta 1 7,1 6 42,9Petani 1 7,1 0 0,0

Pendapatan per Bulan

Tinggi 0 0,0 0 0,0

1,0001Sedang 12 85,7 11 78,6Rendah 2 14,3 3 21,4

Hubungan dengan Pasien

Suami/Istri 3 21,4 4 28,6

0,5332

Adik/Kakak Kandung

1 7,1 0 0,0

Anak Kandung

10 7,14 9 64,3

Orang Lain 0 0,0 1 7,1

Tabel 2 Rata-rata, Standar Deviasi, dan Nilai Min-Max pada Karekteristik Umur dan Lama Menunggu serta Uji Homogentitas pada Kelompok Intervensi dan Kelompok Kontrol (n = 28)

Karekteristik Kelompok Kontrol (n = 14) Kelompok Intervensi (n = 14) Nilai p

Rata-rata (Standar Deviasi)

Min–Max Rata-rata (Standar Deviasi)

Min–Max

Umur (dalam tahun)

39,14 (5,37) 29–48 39,28(5,82) 28–48 0,9471

Lama Menunggu (dalam hari)

3,28 (0,47) 3–4 3,14 (0,36) 3–4 0,3662

1 uji t tidak berpasangan2 uji Mann-Whitney



Tabel 3 Perbedaan Rerata Skor Kesejahteraan Spiritual Sebelum dan Sesudah Bereavement Life Review

Kesejahteraan Spiritual

Kelompok T/Z Nilai p Perbedaan rerata (CI 95%)Intervensi (n

= 14)Kontrol (n =

14)Rerata pre-test 99,21 99,07 Z = -0,232 0,8171 -

Rerata (SD) post-test

106,5 (1,83) 98,71 (3,64) T = -7,786 0,0002 -7,78

(-10,06–5,504)1uji Mann-Withney2uji t tidak berpasangan (df = 19,153)

Tabel 4 Perbedaan Rerata pada Pretest dengan Posttest Skor Kesejahteraa Spiritual Keluarga

Kelompok Rerata (SD) T/Z Nilai p Perbedaan rerata (CI 95%)

Pretest Posttest

Intervensi (n = 14)

99,07 106,5 Z = -3,307 0,0011 -

Kontrol (n = 14)

99,21 (2,83) 98,71 (3,65) T = 0,82 0,4262 0,5 (-0,82) – (1,82)

1Uji Wilcoxon2Uji t berpasangan (df = 13)

Tabel 5 Uji Statistik Perbedaan Peningkatan (Δ Pretest dan Posttest) Skor Kesejahteraan SpiritualKelompok Perbedaan Peningkatan (Δ

Pretest dan Posttest) Skor Kesejahteraan Spiritual

t Nilai p Perbedaan rerata (CI 95%)

Mean SD

Kontrol (n=14) 0,5 2,28 8,76 0,000* 7,93 (6,06–9,78)Intervensi (n=14)

-7,43 2,50

*Uji t tidak berpasangan (df = 26)

bahwa tidak satupun karakteristik responden antara kelompok intervensi dan kontrol berbeda secara signifikan (p>0,05).

Perbedaan rerata skor kesejahteraan spiritual sebelum dan sesudah bereavement life review pada kelompok kontrol dengan kelompok intervensi di rsd dr. soebandi jember terlihat pada tabel 3. Tabel 3 memperlihatkan bahwa skor pre-test kesejahteraan spiritual pada kelompok kontrol lebih rendah dibanding kelompok intervensi, namun tidak berbeda signifikan secara statistik (p = 0,817). Adapun skor post test kelompok intervensi secara signifikan lebih tinggi – yang bermakna spiritual lebih baik dibanding skor post test kelompok kontrol (p = 0,000).

Perbedaan rerata pada pre-test dengan post-

test dari skor kesejahteraan spiritual keluarga pasien stroke pada kelompok intervensi dan kelompok kontrol di rsd dr. soebandi jember terlihat pada tabel 4. Tabel. 4 memperlihatkan bahwa terdapat perbedaan rerata pre-test dan post-test kesejahteraan spiritual pada kelompok intervensi. Hasil uji statistik menunjukkan bahwa nilai p=0,001 sehingga dapat diinterpretasikan bahwa terdapat perbedaan rerata skor pre-test dan post-test kesejahteraan spiritual pada kelompok intervensi. Tabel 4 juga memperlihatkan bahwa terdapat tidak ada perbedaan rerata pre-test dan post-test kesejahteraan spiritual pada kelompok kontrol. Hasil uji statistik menunjukkan nilai p=0,426 sehingga dapat diinterpretasikan bahwa tidak terdapat



perbedaan rerata pre-test dan post-test pada kelompok kontrol. Interpretasi nilai CI 95% berarti bahwa dengan tingkat kepercayaan 95% diyakini bahwa selisih skor pre-test dan post-test tingkat kesejahteraan spiritual keluarga kelompok kontrol adalah antara -0,82 dan 1,82.

Perbedaan peningkatan (δ pre-test dan post-test) skor kesejahteraan spiritual keluarga pasien stroke pada kelompok intervensi dengan kelompok kontrol. dapat dilihat pada tabel 4. Tabel 4 memperlihatkan bahwa terdapat perbedaan rerata dari perbedaan peningkatan (Δ pre-test dan post-test) skor kesejahteraan spiritual pada kelompok intervensi dan kontrol (p=0,000). Interpretasi nilai CI 95% berarti bahwa dengan tingkat kepercayaan 95% diyakini bahwa selisih skor perbedaan peningkatan (Δ pre-test dan post-test) skor kesejahteraan spiritual keluarga pasien stroke pada kelompok intervensi dan kontrol adalah 6,06 dan 9,78. (mohon maaf, untuk tabel ini adalah data selisih, jadi skor pre test dikurangi skor post test. Hasil pengurangan tersebut dicari rata-ratanya, sehingga disebut dengan delta, ini hanya untuk memperkuat data-data sebelumnya, mungkin mohon masukan dari reviewer, apakah perlu dimasukkan juga atau tidak, terimakasih).

Pembahasan

Karakteristik RespondenKarakteristik responden pada kelompok kontrol dan intervensi terbanyak adalah dengan jenis kelamin perempuan, menikah dan tidak bekerja serta merupakan anak kandung dari pasien. Perempuan rumah tangga terbiasa melakukan aktifitas merawat suami atau ibu saat dirawat di rumah sakit. Penelitian Ando, Morita, & Miyashita (2010) yang dilakukan di Jepang terhadap keluarga pasien terminal, responden terbanyak juga adalah perempuan.

Uji homogenitas menununjukkan bahwa tidak ada perbedaan karakteristik responden (umur, lama menunggu, status perkawinan, pendidikan, riwayat pekerjaan, pendapatan perbulan dan hubungan keluarga) antara kelompok kontrol dan intervensi. Tidak adanya perbedaan ini memberikan gambaran

bahwa faktor-faktor yang memengaruhi spiritual dapat dikontrol dan risiko bias responden bisa dikurangi.

Seperti dalam penjelasan sebelumnya agama, umur, lama menunggu, status perkawinan, pendidikan, riwayat pekerjaan, pendapatan perbulan dan hubungan keluarga adalah faktor yang memengaruhi kesejahteraan spiritual. Sebagai upaya menurunkan bias penelitian, peneliti membatasi umur responden, lama menunggu dan kedekatan keluarga, dan agama sehingga data bersifat homogen.

Agama sebagai aspek penting spiritual sangat memengaruhi spiritual (White, Peters, & Schim, 2011). Dalam pemahaman spiritual sangat dipengaruhi agama seseorang. Kriteria inklusi dalam penelitian ini adalah responden yang beragama Islam, sehingga hasil yang dicapai akan homogen.

Umur akan memengaruhi spiritualitas. Penelitian ini menggunakan rentang umur dalam tahap perkembangan dewasa, hal ini dikarenakan pada tingkat perkembangan dewasa, spiritualitas individu telah matang dan membutuhkan peningkatan dalam upaya menemukan makna hidup dan mempersiapkan masa tuanya (Stuart, 2013).Lama menunggu dan kedekatan keluarga adalah faktor yang memengaruhi spiritul dari aspek hubungan sosial. Lama menunggu memperlihatkan kedekatan keluarga dengan pasien, sedangkan hubungan keluarga menggambarkan hubungan secara kedekatan dengan pasien. Tingkat sosial akan memengaruhi spiritual, tingkat sosial yang baik akan memengaruhi spiritual individu (Stuart, 2013).Bereavement life review

Ando, Morita, & Miyashita (2010) menyebutkan bahwa bereavement life review efektif dalam meningkatkan spiritualitas pada keluarga pasien kanker stadium terminal. penelitian tersebut dilakukan di rumah paliatif di Jepang. Hasil penelitian terdapat peningkatan rerata kesejahteraan spiritual pada sebelum dan sesudah pemberian intervensi bereavement life review (19,9±5,8 ke 22,8±5,1;p=0,028). Life review sebagai intervensi dalam peningkatan spiritual juga telah diberikan terhadap pasien kanker stadium akhir dalam peningkatan spiritualitasnya. Ando, Morita, Akechi, & Okamoto (2010)



membuktikan dalam penelitiannya di pusat paliatif di Jepang bahwa terdapat juga peningkatan kesejahteraan spiritual setelah pemberian life review ( 17,2±6,9 ke 22,5±49; p=0,000), namun penelitian ini dilakukan terhadap pasien terminal.

Ando, Sakaguchi, et al., (2013) dalam penelitiannya yang lain membuktikan bahwa bereavement life review juga dapat diaplikasikan terhadap keluarga pasien selain keluarga pasien kanker. Hasil penelitian Ando, Sakaguchi, et al., (2013) menyimpulkan bahwa peningkatan kesejahteraan spiritual pada keluarga pasien kanker dan non kanker setelah intervensi bereavement life review digambarkan tidak ada perbedaan yang signifikan (p=0,34). Penggunaan bereavement life review dapat digunakan dalam semua jenis kondisi atau setting dari keluarga. kanker adalah penyakit terminal dan membutuhkan perawatan paliatif, sehingga beberapa penyakit terminal lain dengan kemungkinan perlu perawatan paliatif (Stroke dan Diabetes Mellitus) dapat menggunakan bereavement life review dalam salah satu intervensinya.

Bereavement life review fokus terhadap pendampingan pada keluarga dengan pendekatan family-centered care. Pendampingan keluarga dan peningkatan spiritualitas keluarga adalah salah satu upaya penerapan family-centered care pada pasien stroke dan keluarga (Payne, Burton, Addington-Hall, & Jones, 2010). Saat kondisi menghadapi kematian, bereavement care merupakan pendampingan dan dukungan mental spiritual kepada keluarga yang akan ditinggal dan setelah ditinggal pasien (Nurbani, 2009). Stevens, et al., (2007) tiannya menyebutkan bahwa family-centered care dan bereavement care adalah implementasi perawatan paliatif pada pasien stroke.

Family Focused Grief Therapy (FFGT) adalah sebuah bentuk pendampingan pada keluarga pasien dalam menghadapi berduka (Kissane et al., 2006). FFGT dan bereavement life review ini memiliki kesamaan dalam prosesnya. Pelaksanaan kedua terapi ini menggunakan pendekatan konsep pendampingan sehingga menghasilkan pemaknaan keluarga terhadap kematian dan kesakitan. Proses pemaknaan hidup tersebut

sangat berpengaruh terhadap aspek psikologis maupun aspek fisik dari keluarga tersebut. Namun, bereavement life review mempunyai kelebihan dalam prosesnya karena lebih cepat dan lebih mudah untuk diaplikasikan kepada pasien dalam peningkatan spiritual, sedangkan FFGT mempunyai kelemahan waktu yang lama dan lebih sulit dalam mengaplikasikan di tatanan klinik.Kesejahteraan Spiritual Keluarga Pasien Stroke

Kesejahteraan spiritual keluarga pasien stroke dalam penelitian ini terdapat dua aspek yang mengalami peningkatan akibat intervensi bereavement life review, aspek eksistensial dan aspek religiusitas (Paloutzian et al., 2012). Aspek eksistensional meningkat akibat dari peningkatan self relience. Kesejahteraan spiritual adalah proses saat individu memandang tentang harapan yang terlihat. Kesejahteran spiritual dapat dinilai secara kuantitatif yang disajikan dalam skor ataupun dinilai secara kualitatif dalam bentuk narasi (Paloutzian et al., 2012). Kesejahteraan Spiritual merupakan aspek penyembuhan bagi pasien dan keluarga dengan penyakit kronis (Nuraeni, Nurhidayah, Hidayati, Windani, & Sari, 2015). Penelitian ini bertujuan untuk melihat peningkatan kesejahteraan spiritual sehingga akan lebih terlihat ketika menggunakan skor untuk menggambarkan terjadinya peningkatan atau penurunan kesejahteraan spiritual.

Aspek agama (religious) dalam kesejahteraan spiritual sangat dipengaruhi oleh kepercayaan dan doktrin agama dari individu, terkait hubungannya dengan sang pencipta. Dalam menghindari adanya bias seleksi dalam penelitian ini, semua responden adalah yang beragama Islam, sehingga proses intervensi, responden mempunyai latar belakang yang sama terhadap keyakinan dan doktrin yang didapat.

Bereavement life review dalam Islam sejalan dengan konsep muhasabah. Muhasabah dapat diartikan sebagai merupakan suatu sikap yang selalu menghitung/menghisab (layak atau tidak) bertentangan dengan kehendak Allah, sehingga terhindar dari perasaan bersalah yang berlebihan, cemas, dan lain sebagainya. Individu akan mengetahui kekurangan-kekurangan dan kelebihan-kelebihan yang ada pada dirinya serta mengetahui hak



Allah atas dirinya saat proses bermuhasabah (Anam, 2012). Proses bereavement life review juga melihat masa lalu untuk mendapatkan pemaknaan yang baik pada masa yang akan datang, kedua proses ini merupakan hal yang sejalan dalam upaya peningkatan spiritual.

Keluarga pasien stroke mempunyai kekhasan sendiri dalam merawat pasien. Menurut Iosif, Papathanasiou, Staboulis, & Gouliamos (2012) stroke adalah penyakit yang mendadak dan tiba-tiba terkadang keluarga masih belum siap terhadap apa yang terjadi pada pasien. Stressor yang unik ini membutuhkan intervensi dengan pendekatan individu. Hal ini merupakan proses berduka yang perlu diselesaikan dalam peningkatan kualitas hidup keluarga dan kualitas perawatan keluarga yang diberikan kepada pasien. Peningkatan spiritual ini merupakan upaya dalam membawa proses berduka menuju berduka yang efektif dan tidak terjadi maladaptif. Spiritualitas ini adalah sebagai upaya protektif dalam pencegahan kejadian yang tidak diinginkan akibat berduka yang tidak efektif, seperti PTSD dan kejadian penyakit kardiovaskuler (Houwen et al., 2010). Hasil rerata pre-test skor kesejahteraan spiritual responden pada kelompok kontrol dan intervensi dalam kategori sedang. Hal ini menunjukkan stressor stroke ini berdampak terhadap kesejahteraan spiritual pasien.Pengaruh Bereavement Life Review terhadap Kesejahteraan Spiritual Keluarga Pasien Stroke

Pengaruh bereavement life review terhadap kesejahteraan spiritual keluarga pasien stroke pada hasil penelitian menunjukkan bahwa terdapat pengaruh Bereavement life review terhadap spiritual keluarga pasien stroke. Pengaruh ini terlihat dari adanya perbedaan post-test skor SWBS pada kelompok kontrol dan kelompok intervensi. peningkatan perbedaan (Δ pre-test dan post-test) skor SWBS juga terlihat terdapat perbedaan pada kelompok kontrol dan intervensi. Pada Penelitian di Jepang, Bereavement life review memengaruhi spiritual keluarga pasien dengan penyakit kronis (Ando, Morita, & Miyashita, 2010; Ando, Sakaguchi, et al., 2013). Bereavement life review memengaruhi spiritual keluarga pasien stroke melalui setiap tahapan konsep bereavement life review. Setiap tahapan dari bereavement life

review dapat membentuk aspek spiritual baik eksistensional dan religiusitas keluarga pasien stroke. Tahap dalam bereavement life review meliputi rekonstektualisasi, memaafkan terhadap diri individu dan proses refleksi (Garland & Garland, 2005). Ketiga tahap ini mempunyai karakteristik yang berbeda dalam individu dan merupakan proses yang dilewati dalam proses bereavement life review.

Proses rekontekstualisasi terbentuk saat responden dan terapis melakukan interaksi pada pertemuan pertama. Menurut Ando, Morita & Miyashita (2010) tahap rekonstektualisasi dalam bereavement life review muncul ketika responden mampu membentuk lingkungan yang membuat responden melupakan sedikit kesedihannya. Tahap rekontekstualisasi adalah proses penguatan tahap acceptance dalam tahapan berduka, respon individu dalam rekontekstualiasi akan lebih cepat ketika individu telah dalam tahap acceptance. (Jenko, Gonzalez, & Alley, 2010).

Tahap kedua adalah memaafkan terhadap diri individu (forgiving). Proses ini merupakan upaya peningkatan kemampuan koping individu dalam menghadapi proses berduka dan dapat meningkatkan spiritualitas (Garland & Garland, 2005). Proses memaafkan ini muncul setelah akhir sesi pertama dan menuju proses sesi ke dua. Menurut Ando, Morita & Miyashita (2010) tahap setelah pengkondisian lingkungan adalah mengingat memori yang baik dan mengevaluasi memori yang buruk. Hal ini senada dengan pendapat Garland dan Garland (2005) proses memafkan terhadap diri individu ini muncul ketika terdapat evaluasi dari memori atau hal yang berkesan dari responden saat bersama dan merawat pasien.

Proses memaafkan terhadap diri individu ini ditandai dengan peningkatan emosi, menangis dan merasakan keadaan pasien sebagai hal yang disyukuri tanpa menyalahkan diri sendiri sebagai keluarga terdekat pasien. Proses ini merupakan upaya penemuan makna hidup responden sehingga dapat menata hidup lebih baik dan meningkatkan self relience individu. Tahap memafkan ini membutuhkan waktu 2–4 hari sebagai upaya peningkatan self relience (Jenko, Gonzalez, & Alley, 2010).

Proses selanjutnya adalah refleksi.



Refleksi muncul setelah proses memaafkan diri itu mampu memberikan suatu makna mendalam dari keluarga terhadap pasien yang sedang dirawatnya (Garland & Garland, 2005). Refleksi dalam penelitian ini dibantu dengan visualisasi berupa album mini yang dibuat sesuai dengan hasil intervensi bereavement life review. Visualisasi menurut Ando, Morita & Miyashita (2010) dapat meningkatkan spiritual sebagai pengingat terhadap siapa yang menciptakan, untuk apa dia hidup dan pengulangan terhadap apa yang telah dilakukan.

Album yang diberikan berupa gambar yang dapat meningkatkan spiritual, baik aspek religiusitas maupun aspek eksistensional. gambar yang ditampilkan berupa gambar simbol-simbol agama, dalam hal ini adalah Islam. Simbol-simbol tersebut merupakan identitas dari agama sebagai salah satu aspek religiusitas dalam konsep spiritual (Arjmandi, Tahir, Shabankareh, Shabani, & Mazaheri, 2011). Kombinasi tulisan juga ditampilkan berupa frasa pendek yang dapat terekam dengan baik oleh responden (Ando, Morita, & Miyashita, 2010). Frasa ini diproses dari rekaman bereavement life review yang telah dilewati oleh responden. Penentuan frasa dilakukan bersama terapis agar makna yang terkandung dari hasil wawancara tidak hilang. Bibliografi ini dapat menambah kemampuan refleksi dari responden sehingga dapat meningkatkan kesejahteraan spiritual responden dan mempercepat proses berduka dan mencegah terjadinya berduka disfungsional.

Ke tiga tahap ini harus dilewati oleh responden untuk meningkatkan spiritualitas. Responden akan mengalami peningkatan spiritual ketika telah melewati ke tiga tahap tersebut. Saat responden mencapai tahap refleksi koping individu mulai muncul dan diperkuat dengan gambar-gambar spiritual sehingga pemaknaan hidup individu akan terbentuk. Pemaknaan hidup yang kuat adalah salah satu indikator spiritualitas indivisu meningkat. Penelitian ini memang tidak melihat secara objektif tahapan yang telah dilalui. Evaluasi yang digunakan adalah outcome terakhir berupa tingkat kesejahteraan spiritual, sehingga tidak bisa menggambarkan perjalanan secara jelas mengenai apa yang sedang dialami oleh

pasien selama terapi yang dilakukan. Proses bereavement life review ini

sangat dipengaruhi oleh keadaan awal dari responden (Ando, Sakaguchi, et al., 2013). Pasien dengan depresi akut tidak bisa dilakukan bereavement life review, perlu adanya intervensi lain untuk menenangkan individu tersebut dahulu, kemudian dilakukan intervensi bereavement life review. Bereavement life review dalam beberapa teori mampu untuk meningkatkan kesejahteraan spiritual dan menurunkan depresi, namun depresi dalam konteks ini adalah depresi sedang yang bukan dalam keadaan akut (Ando, Tsuda, et al., 2013).

Proses bereavement life review juga sangat terkait dengan budaya. Penelitian dilakukan kepada pasien dengan budaya yang sama. Ahli keperawatan jiwa sebagai fasilitator bereavement life review adalah individu yang telah lama tinggal di Jember, hal ini sebagai upaya pendekatan budaya dalam proses bereavement life review. Budaya Jember sendiri menurut hasil wawancara dengan perawat ruang melati, menyebutkan bahwa individu dengan latar belakang etnis Jember lebih nyaman berdiskusi dan mengutarakan pendapat dengan orang yang mempunyai latar budaya yang sama. Keunikan etnis Jember juga adalah keterbukaan informasi akan lebih cepat diutarakan sehingga sesuai apabila menggunakan Bereavement life review dalam menggali makna hidup sebagai upaya peningkatan kesejahteraan spiritual keluarga pasien stroke.

Spiritual adalah aspek yang dinamis dalam suatu individu. Mempertahankan kesejahteraan spiritual agar tetap dalam keadaan baik adalah fungsi perawat dalam upaya peningkatan kualitas hidup dan sebagai faktor protektif terjadinya berduka disfungsional (Strada-Russo, 2006). Spiritual yang bersifat dinamis ini sangat memengaruhi intervensi bereavement life review ini, dalam pelaksanaannya bereavement life review perlu dilakukan berkelanjutan, tidak bisa dilakukan sekali. dalam setting klinik, bereavement life review perlu dilakukan ketika pasien telah mulai dalam keadaan penurunan harapan hidup dan menuju depresi. Pengkajian berkelanjutan juga perlu dilakukan secara berkala sebagai dasar dilakukan intervensi bereavement life review.



Pengembangan alat ukur spiritual juga perlu dilakukan. Spiritual yang berpengaruh pada budaya merupakan hal yang perlu diperhatikan. Item pertanyaan dalam SWBS perlu pengkajian lebih dalam terkait kesesuaian dengan budaya dan agama di Jember khususnya dan di Indonesia pada umumnya. Proses pengembangan kuesioner juga membutuhkan kajian riset yang mendalam sebagai upaya menjaga realibilitas dan validitas kuesioner tersebut.

Life review merupakan terapi yang telah lama dikembangkan tapi masih sangat jarang digunakan dalam setting klinik. Life review sangat potensial digunakan sebagai terapi komplementer dalam penguatan status psikologis dan status spiritual pasien maupun keluarga (Jenko, Gonzalez, & Alley, 2010). penelitian selanjutnya terkait bereavement life review perlu adanya modifikasi intervensi. Life review dapat dikombinasikan dengan pendidikan kesehatan perawatan pascastroke, hal ini dapat memperkuat status spiritual keluarga juga dapat meningkatkan pengetahuan keluarga dalam perawatan pascastroke. Bereavement life review bisa menjadi terapi yang lengkap dan dapat memberikan hasil yang maksimal bagi keluarga dan pasien.

Dampak bereavement life review yang lain terkait status kesehatan yang berkaitan dengan spiritual seperti kecemasan, depresi, kompleksitas berduka dan motivasi serta kualitas hidup belum dimunculkan dalam penelitian ini, karena tingkat kesejahteraan spiritual keluarga pasien stroke berkaitan dengan aspek psikologis yang lain sehingga pembahasan akan lebih komperehensif. Penelitian ini masih murni penelitian kuantitatif. Seharusnya penelitian terkait bereavement life review juga harus dikaji dari sisi kualitatif, terkait analisis data yang diungkapkan langsung oleh pasien dalam proses intervensi sehingga terlihat proses yang dilalui saat pemberian intervensi bereavement life review. Penelitian ini juga hanya terbatas terhadap keluarga pasien stroke serangan pertama dengan latar belakang etnis Jember, sehingga belum bisa untuk digeneralisir secara umum dari pengaruh bereavement life review terhadap peningkatan kesejahteraan spiritual.

Simpulan

Hasil penelitian ini menyimpulkan bahwa terdapat pengaruh dari bereavement life review sebagai terapi psikologis dalam peningkatan kesejahteraan spiritual keluarga pasien stroke. Bereavement life review memberikan efek peningkatan koping melalui proses peningkatan integritas diri sehingga dapat meningkatkan pemaknaan terhadap diri dan lingkungan. Saran untuk penelitian selanjutnya adalah studi terkait intervensi bereavement life review dalam dampaknya terhadap depresi, kecemasan dan kualitas hidup keluarga dan pasien stroke.. Pengembangan penelitian keterkaitan bereavement life review dapat dilakukan dengan melihat pengaruh intervensi terhadap penyakit kronis yang lain seperti, diabetes mellitus atau hipertensi. Pengembangan indikator psikologis lain dari pengaruh bereavement life review seperti pemberdayaan, manajemen diri, efikasi diri maupun kualitas hidup juga perlu dilakukan.

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REDUCING DEPRESSION AMONG FAMILY CAREGIVERS OF STROKE

SURVIVORS: AN INTERVENTION OF BEREAVEMENT LIFE REVIEW

Conference Paper · November 2015

DOI: 10.13140/RG.2.1.3430.8720

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REDUCING DEPRESSION AMONG FAMILY CAREGIVERS OF STROKE

SURVIVORS: AN INTERVENTION OF BEREAVEMENT LIFE REVIEW

A’la, MZ1, Yosep, I

2 Agustina, HR

2

1School of Nursing, Lecturer, Universitas Jember, [email protected]

2Faculty of Nursing, Lecturer, Universitas Padjadjaran

Background: Family caregivers are the important role in supporting people with

chronic illness. Stroke is the major cause of long-term disability and rehabilitation

which may contribute to family caregivers' experiences of emotional distress. Family

caregivers with depressive symptoms can be priority areas for interventions. This study

aimed to investigate differences of depression level among family caregivers of stroke

survivors before and after Bereavement life review intervention. Method: This quasi-

experimental study examined 28 family caregivers of stroke survivors who obtained by

consecutive sampling including 14 in control group and 14 in intervention group. The

intervention group got Bereavement life review with 2 sessions conducted by mental

health nursing expert. Pre and post test score of depression was measured by the Center

for Epidemiological Studies Depression Scale (CES-D). Results: The results showed

that the level of depression after intervention was significantly difference between two

groups (55.93 ± 2.79 and 49.79 ± 4.53; p = 0.000). The level of depression were also

significantly difference in intervention group before and after intervention (56 ± 2.51

and 49.79 ± 4.53; p = 0.001). Bereavement life review process is a reduction process for

depression through re-contextualization, forgiving and reflection. These processes are

strengthening the individual coping as their psychological aspect. Conclusion: In

conclusion, bereavement life review is considered as an intervention to reduce

depression among stroke survivors and their family caregiver. A bereavement life

review study using mix-method is needed for further research.

Keywords : Bereavement life review, Depression, Family caregiver, Stroke survivors.

Background

Stroke is a serious health problem. In

2015, WHO estimates that there are 20

million people will be die because of

stroke attack. The proportion of stroke

mortality was 15.4% in 2007. Every

seven people who died in Indonesia,

one of them is caused by a stroke attack

(Kementerian Kesehatan, 2012).

Problems that occur not only have

impact on the patient, but also have an

impact on the family.

Death of the families or spouses who

abandoned terminal patients is raising

significantly (Stroebe, Schut, &

Stroebe, 2007). Mortality of deaths due

to the loss of a spouse or the loss of a

loved family member is greater than the

cardiovascular Disease (CVD) (Strada-

Russo, 2006). Mortality of families

which be abandoned by patient reaches


75-100% in the first 6 months (Mendes

de Leon, kasl, & Jacobs, 1993). Stressor

due to the patient death is the highest

stress causes stress also affects

depression on the family (S. DeLaune &

Ladner, 2002). Depression arises

because of the abnormal reaction of the

grieving process. This problem requires

a solution in a decrease the mortality

rate of families (Michalski,

Vanderwerker, and Prigerson, 2007).

Life review is a depiction of describing

the past life experiment which current

context and carried by the patient itself

(Roach, 2009). Life review is a nursing

intervention. Some studies suggest that

the life review effective to help patient

towards the grieving process. the study

Ando, Morita, Akechi, et al. (2010) with

a randomized controlled trial show that

short-term life review can decrease

depressive and distress spiritual patients

with a terminal illness, and deliver to

peaceful of death.

Bereavement life review concept begins

from the life review concept with

visualization autobiography using the

memory album. Visualization is

expected to make the patient more

valuable in their life. Ando, Morita and

Miyashita (2010) found that the

Bereavement life-review potential to

enhance the spiritual wellbeing and to

reduce depression relatives of patients

with terminal illness.

RSD Soebandi Jember is type B

hospital as a center of heath care

provider for the part of eastern area in

East Java. Researchers get the data from

the hospital medical records and we

found the number of patient with a

diagnosis of stroke in January-August

2013 as many as 408 patients

The interviews with three nurses there

in August 2013 on Melati wards found

that in spiritual support for families and

patients is necessary for increasing the

quality service in this hospital.

According to interviewing with nurses

and head nurse said that ever happened

the hysteria of family when patients

were passed away. This may indicate

that ineffective bereavement in a family.

The nurse said that needing the

interventions to prepare the families

caregiver toward effective bereavement

From the observation during the three

days found that 90% of the husband /

wife accompany the patient in the

hospital. The interviews with the family

show that the psychosocial need is an

important one in reducing stress. Family

described still a little bit of nursing

intervention which was given to the

patient's family. The Interventions was

still providing information about the

patient's condition.

From the data and the facts is needed

the research in decreasing the

depression in families with stroke

patients. Bereavement life review is one

of the nursing interventions which

reducing the depression. The aims of

study is to show the effect of

bereavement life review to decrease of

depression in families caregiver of

stroke survivor

Method

This research was a quasi-experimental

study used a quantitative approach. This

study should be composed of two

variables are independent variables and

the dependent variable. The dependent

variable of this study was the level of

depression as measured by Center for

Epidemiological Studies Depression

Scale (CES-D) questionnaire. The

independent variable in this study was

the intervention of Bereavement life

review. Bereavement life review

interventions performed by mental

health nursing which expert in life

review therapy. The intervention was

done at enclosed room to maintain the

privacy of the respondents.

Bereavement life review conducted over

two sessions. Exploring patient’s feel is

The first session with some trigger

questions which adopted from research

Ando et al (2010) which consists of: 1)

what is the most important thing in your

life and why? 2) What are your most

impressive memories of the patient? 3)

In taking care of the patient, what is

your most pleasant memory with the

patient? 4) What growth did you

experience through taking care of the

patient? 5) What is the most important

role you have played in your life? And

6) what are you proudest of in your life?

The interview with the patient was

recorded. After the interview finished

the first session, the therapist

transcribed the interviews result and we

made a mini album. The second session

was conducted one week after the first

session. We accompany respondent and

see the mini album which we made.

The population of this research was

families of patients with stroke which

treated in RSD Soebandi Jember.

Sampling method used consecutive

sampling, the number of samples

selected by the sequence of the patient.

the inclusion criteria was: 1) patients

relatives with stroke diagnosis by a

physician and has been cared for more

than two days, 2) The closest family,

the husband / wife of the patient, or a

patient's own child or brother / sister of

the patient. 3) Respondent could read

and write. While exclusion criteria: 1)

respondent with psychiatric disorders

which was diagnosed by a physician.

The number of samples according the

previous research by Ando, Minota,

Shibukawa, & Kira (2012) as many as

28 people, with 14 people in the control

group and 14 people in the intervention

group

Both of Groups will get a pretest to see

the level of depression used CES-D.

The intervention group got

Bereavement life review after pretest

and the control group did not got it.

After one week, Both of Groups got

posttest.

We calculated the score of CES-

D of a family used computer program.

Comparison pre and post intervention

used paired t test, and comparison

control and intervention posttest used

unpaired t test.

Table 1

Respondent Characteristics and comparation Between control and intervention group

Characteristic Control group

(n=14)

Intervention

group

(n=14)

P value

Amount % amount %

Ages Mean 39,14 39,29 0,947

Duration

care in

hospital

Mean 3,29 3,14 0,366

Sex Men 2 14,3 3 21,4 1,000

Women 12 85,7 11 78,6

Marriage

status

Married 13 92,9 9 64,3 0,167

No married 1 7,1 5 35,7

Education

Level

Elementary

school

1 7,1 2 14,3 0,821

Junior high

school

3 21,4 3 21,4

Senior high

school

9 64,3 7 50

Higher

education

1 7,1 2 14,3

History of

job

Jobless 12 85,7 8 57,1 0,068

Private

company

employer

1 7,1 6 42,9

Farmer 1 7,1 0 0

Salary High 0 0 0 0 1,000

Average 12 85,7 11 78,6

Low 2 14,3 3 21,4

Relation

with

patient

Husband/Wife 3 21,4 4 28,6 0,533

Sister/brother 1 7,1 0 0

Own child 10 71,4 9 64,3

Others 0 0 1 7,1

Table 2

Scores of CES-D Pretest and Posttest in Control and Intervention Group And Mean

Differences

Group

Mean (SD)

T P

Mean Differences (CI

95%) Pre test Post

test

intervention(n=14) 56 (2,51) 49,79

(4,53)

T=4,287 0,001 6,21 (3,08-9,34)

Control (n=14) 55,79

(2,57)

55,93

(2,79)

T=-

0,458

0,655 -0,14 (-0,81) – (0,53)

Table 3

CES-D Scores Differences of control and intervention group in posttest and pretest

Depression

with CES-

D scores

Group

T P

Mean differences

(CI 95%) Control

(n=14)

Intervention

(n=14)

pretest

mean (SD)

55,79

(2,57)

56 (2,51) T= -

0,223

0,825 -0,21 (-2,19 - -1,76)

posttest

mean (SD)

55,93

(2,79)

49,79 (4,53) T=4,324 0,000 6,14

(3,23-9,06)

Results and Discussions

Result

Respondents’ characteristics in the

control and the intervention group the

most is women, married, jobless, and

the own child. Respondents’

characteristics were showed in table 1.

After the Bereavement Life Review,

CES-D scores decreased from 56±2,51

to 49,79±4,53; t=4,287. The study result

with paired t test was p=0,001. In

control group, CES-D scores increased

from 55,79±2,57 to 55,93±2,79 ;

T=0,458. The paired t test’s result was

p=0,655. These results were figured in

table 2. Comparison posttest in control

and intervention group showed p=0,000

(55,93±2,79 vs 49,79 ±4,53). These

result are figured in table 3.

Discussion

The study has showed that

depression decreased with bereavement

life review. The study results are similar

with Ando, Morita and Miyashita

(2010) which Bereavement life review

was effective in reducing depression in

in family of terminal cancer patients.

This research held on palliative care

center in Japan. Ando, Sakaguchi,

Shiihara, and Izuhara (2013) also

represented that Bereavement life

review can be applied not only for

family of cancer patients but also for the

all of patient's family condition. This

result was showed by p value = 0.34

(difference bereavement life review in

families of cancer patient and other

condition). Cancer is a disease that has a

high mortality rate, but several other

diseases that potential for the treatment

of end-of-life it is possible to do

Bereavement life review.

Mortality rate of Stroke is high

(Mumenthaler & Mattle, 2006). Deaths

because of stroke occurs about 80% in

developing countries. This problem

makes stroke as a concern in the area of

palliative care. Assistance to families

and provide interventions in decreasing

depression is something that needs to be

given to the families of stroke patients

(Nurbani, 2009).

Decreased family depression

with accompaniment is one of palliative

care goals in stroke patients and the

family. The concept used the family-

centered care approach (Burton &

Payne, 2012). This accompaniment is a

bereavement care in the face of peaceful

death of the patient, as well as provides

mental and spiritual support to families

when patients required total care by the

family. Family-centered care is a one of

focused in the palliative care, so that

every intervention needed to involve the

family. The family also need to get

specific intervention to face the grieving

process experienced (Stevens, Payne,

Burton, Addington-Hall, & Jones,

2007).

Differences of this study with

previous study is this study focused on

families caregiver of stroke, the sample

used is when the patient is in an acute,

so it has its own uniqueness in the

process. The next difference is

homogeneous patient, so this study

specifically used for Jember ethnic, so

that its application will be easier and

more applicable.

Family caregiver of stroke have

been certain characteristics in treating

the patient. According to Iosif,

Papathanasiou, Staboulis, and

Gouliamos (2012) stroke was a disease

that suddenly and unexpectedly.

Sometimes families are not ready what

happened to the patient. This stressor

required an intervention with an

individual approach. Depression

reducing is an effort to bring the

grieving process towards effective

grieving. The effective grieving was to

improve the quality of life and the

quality of care which given to the

patient's family

Bereavement life review’s

process is influenced by the based

depression level of the respondents

(Ando, Sakaguchi, et al., 2013).

Respondents with severe depression

cannot be given a Bereavement life

review, so this respondents needs other

interventions to calm, before this

respondents was given a Bereavement

life review. In a few theories,

Bereavement life review was able to

improve spiritual well-being and to

decrease depression, but depression

level is in moderate state. (Ando, Tsuda,

et al., 2013).

Bereavement life review have a

three phases, there are re-

contextualization, forgiving, and

reflection (Garland and Garland, 2005).

The third phase has different

characteristics in the each person and

has been passed with patient with

bereavement life review.

The process of re-

contextualization is formed when the

respondent and the therapist to interact

on a first meeting. Our observation, the

question of therapist in digging of

respondent’s life review can improve

respondent emotional. Emotion that

emerges is a positive emotion that leads

to the wishes and desires in order to

become the best person for the patient

who is being cared.

The second phase is a forgiving.

This process is an effort to improve the

coping ability of individuals in the face

of grieving process and can reduce a

depression (Garland and Garland,

2005). The process of forgiveness

comes after the end of the first session

and towards the second session.

The next process is the

reflection. Reflections appear after the

person was able to forgive themselves.

This process gives a deep meaning of

the family of the patient who is being

cared (Garland and Garland, 2005).

Reflection in this study aided by the

visualization in the form of a mini

album made in accordance with the

results of the intervention of

Bereavement life review. Visualization

according Ando, Morita and Miyashita

(2010) may reduce a depression as an

effort to make good coping.

Bereavement Life Review

process is also associated with the

cultures. The study was conducted to

patients with the same culture. The

facilitator of Bereavement Life Review

is a mental health nursing who expert in

life review intervention and as a jember

native resident. According the melati’s

nurse ward, native resident of Jember

will be more comfortable if they discuss

with person who have the same culture.

Life review is a therapy that has

been developed but it is still very rarely

used in clinical settings. Life review

have potentially used as a

complementary therapy in strengthening

the psychological status of patients and

families (Jenko, Gonzalez, and Alley,

2010). The next studies related to

Bereavement life review is needed a

modification of intervention. Life

review can be combined with health

education or discharge planning about

post-stroke care to get a comprehensive

result, not only increase a psychological

status but also increase a patient and

families knowledge.

Conclusion

Bereavement Life Review is

considered as an intervention to reduce

depression among stroke survivors and

their family caregiver through three

phases, there are re-contextualization,

forgiving, and reflection. These Three

phases was strengthening the individual

coping as their psychological aspect. A

bereavement life review study using

mix-method and modification of

intervention are needed for further

research.

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https://www.researchgate.net/publication/304351971

SHORT COMMUNICATION

Factors that influence the efficacy of bereavement life reviewtherapy for spiritual well-being: a qualitative analysis

Michiyo Ando & Tatsuya Morita & Mitsunori Miyashita &

Makiko Sanjo & Haruko Kira & Yasuo Shima

Received: 8 June 2010 /Accepted: 7 September 2010 /Published online: 16 September 2010# Springer-Verlag 2010

AbstractPurpose We have previously shown that bereavement lifereview therapy improves the spiritual well-being of abereaved family, but the factors that influence the efficacyof this therapy have not been determined. Therefore, thisstudy was performed to identify factors associated withimprovement of spiritual well-being of bereaved families.Methods The participants were 21 bereaved family mem-bers who lost a relative who had been treated in a palliativecare unit in Japan. The family members received the

Bereavement Life Review over two sessions of about60 min each. In the first session, the bereaved familymember reviewed their memories of the deceased relativewith a clinical psychologist and answered several questions.After the first session, the psychologist made an album. Inthe second session, the family member and the psychologistconfirmed the accuracy of the contents of the album.Assessment was performed using the Functional Assess-ment Chronic Illness Therapy-Spiritual score, based onwhich the participants were separated into effective andnon-effective groups. Factors were extracted from thenarrative of the therapy using a text-mining software.Results Factors such as “good memories of family,” “lossand reconstruction,” and “pleasant memories of last days”were commonly found in the effective group, whereasfactors such as “suffering with memories,” “regret andsense of guilt,” and “disagreement on funeral arrange-ments” were more common in the non-effective group.Conclusions Factors like “good memories of families,”“loss and reconstruction,” and “pleasant memories of lastdays” were associated with the improvement of spiritualwell-being of bereaved families.

Keywords Cancer patients . Bereavement life review .

Spiritual well-being . Effective factors

Introduction

Bereaved family members may experience physical orpsychological problems as a grief reaction [1, 2]. Anunresolved or complicated reaction may require emotionaland behavioral therapy for spiritual dysfunction [3];disbelief about death; lack of acceptance of death; pro-longed searching and yearning [4]; hopelessness [5]; and

M. Ando (*)Faculty of Nursing, St. Mary’s College,Tsubukuhonmachi 422, Kurume City,Fukuoka, Japane-mail: [email protected]

T. MoritaDepartment of Palliative and Supportive Care, Palliative CareTeam and Seirei Hospice, Seirei Mikatahara General Hospital,Shizuoka, Japan

M. MiyashitaDepartment of Palliative Nursing, Health Science,Tohoku University,Miyagi, Japan

M. SanjoFaculty of Medicine, Adult Nursing, School of Nursing,Toho University,Tokyo, Japan

H. KiraGraduate School of Psychology, Kurume University,Kurume, Japan

Y. ShimaDepartment of Palliative Medicine,Tsukuba Medical Center Hospital,Ibaraki, Japan

Support Care Cancer (2011) 19:309–314DOI 10.1007/s00520-010-1006-7

the link between suicide [6], hopelessness [7], anddepression [8]. To cope with these reactions, hospicesprovide support such as counseling or befriending [9], ameaning-oriented approach for grief [10], and cognitivebehavior therapy for complicated grief [11]. In Japan,memorial cards and services are frequently provided,included by many health care professionals [12] andsupport groups [13]. Staff members in palliative care units(PCUs) recognize the need for individualized care [12], butthere are few studies on the effect of the intervention on thespiritual well-being of bereaved family members.

The following are theories of grief process, the FourTask theory by Warden [13] such as accepting the loss,acknowledging the pain and working through it, taking onnew role, and finding an appropriate place, the DualProcess by Strobe and Schut [14] in which the bereavedfamilies experience both loss-oriented or restorationorientated coping, or the Reconstruction of MeaningMaking therapy based on constructivism by Neimeyer,Burke, Mackay [15] in which the bereaved families makenew meaning by re-telling story. These theories includetelling or reviewing stories of the bereaved families. Thus,we developed the Bereavement Life Review as psycho-therapy by reviewing lives especially for improving thespiritual well-being of bereaved families since they oftenlose meaning or purpose to live because of loss of theimportant person, and it relates with quality of life [16].Spiritual well-being is defined as having a meaning for lifeor purpose, peace of mind, and relationships with others[17, 18].

The Bereavement Life Review includes a review ofmemories with the deceased person in the first session.The interviewer makes an album after the first sessionand then confirms the contents of the album with theparticipant in the second session. We have shown thatthis therapy increases the spiritual well-being of abereaved family [19]; however, the factors that influencethe efficacy of the therapy are unclear. Therefore, thepresent study was performed to identify factors that makethe Bereavement Life Review effective for the improve-ment of spiritual well-being.

Methods

Participants

Primary physicians identified potential participants basedon the following inclusion criteria: (1) the family memberwas bereaved due to the death of a relative from cancer in aPCU, (2) the family member was ≥20 years old, and (3) thefamily member was capable of replying to the question-naires. The exclusion criteria were that the participant (1)

may suffer serious psychological distress as determined bythe primary physician and (2) was not aware of thediagnosis of malignancy.

The study was performed as part of a large cross-sectionalanonymous nationwide survey of bereaved families of cancerpatients who had been admitted to 100 PCUs in Japan. ThePCU is the most common type of specialized palliative careservice in Japan. Therefore, we chose bereaved familymembers of patients in PCUs as the subjects of the study.All PCUs provide palliative care through a multidisciplinaryteam, including attending physicians, nurses, psychiatrists,clinical psychologists, and medical social workers. SomePCUs also provide regular religious care by pastoral careworkers or priests. The details of the service contents havebeen given elsewhere [20]. Questionnaires about the pallia-tive care service were mailed to bereaved families in June2007 and again in August 2007 to non-responding families.The detailed methods of the larger study have been givenelsewhere [21, 22].

In the questionnaire, the families indicated if theywere willing to participate in another research interview.One of the co-authors made a list of registeredparticipants who were willing to undergo an interviewand mailed this list to the interviewer. The interviewerselected 64 registered participants for interview based ona consideration of traveling distance and mailed anexplanation of the Bereavement Life Review to theseparticipants. Subsequently, 28 family members repliedwith consent to contact them for an interview. Theinterviewer first contacted the family member by phone,and seven were eliminated from the study due todifficulties with movement (n=1), illness (n=1), very longtraveling distance (n=1), withdrawal of consent (n=2), andinability to contact (n=2). Thus, 21 family membersparticipated in the study (six males, mean age 65±15.1 yearsold; 15 females, mean age 60±11.7 years old).

Questionnaires

The Japanese version of the Functional AssessmentChronic Illness Therapy-Spiritual (FACIT-Sp) scale [23],which was translated from the original version of Petermanet al. [18], was used to measure spirituality. Items on theFACIT-Sp are scored on 5-point scales ranging from 4(strongly agree) to 0 (strongly disagree).

Procedures

The ethical and scientific validity of the study was approvedby the institutional review board of St. Mary’s College.Interviews were conducted individually by a clinical psychol-ogist in a college office. Two interview sessions wereconducted in the Bereavement Life Review. Participants

310 Support Care Cancer (2011) 19:309–314

orally completed a questionnaire about spiritual well-being(FACIT-Sp) before the first session and after the secondsession. Each interview session lasted about 30 to 60 min.

In the first session, participants reviewed their life and theirmemories of the deceased along the following questions: (1)What is the most important thing in your life and why? (2)What are your strongest memories of the patient? (3) In takingcare of the patient, what is your most pleasant memory withthe patient? (4) What growth did you experience throughtaking care of the patient? (5) What is the most important roleyou have played in your life? (6) What are you proudest of inyour life? The narratives of the interviews of the subjects wererecorded. After the first session, in order to make an album forthe participants, the interview was transcribed verbatim andthe therapist made a simple album. In the album, key words orimpressive words from the answer to each question wereselected by the psychologist, and she pasted photos ordrawings from books or magazines that were related to theparticipants’ words or phrases in order to make the albumbeautiful and memory-provoking. In the second session, theparticipants and the psychologist viewed the album togetherand agreed upon the contents.

Data analysis

Transcribed verbatim in the interview which was used tomake an album was also used for data analysis. To identifyfactors associated with spiritual well-being, we used the text-mining program Word Miner [24, 25] to find specific wordswithin the transcribed verbatim. Since we wanted to know thecontents for subjects with strong improvement of spiritualwell-being, we examined the relationships between theFACIT-Sp score and the contents extracted by the software.Patient narratives were first divided into meaningful words or

phrases, and words with the same meaning were substituted,for example, both “mom” and “mother” were included as“mother.”Articles or punctuation marks were deleted, leavingonly meaningful words, which are referred to as “fragments.”A correspondence analysis was performed between thefragments and FACIT-Sp scores, and a significance test wasconducted after this analysis to find fragments with asignificant relationship with the FACIT-Sp scores.

A total of 333 fragments were chosen from the narrativesof the 21 bereaved family members. Differences in FACIT-Sp scores before and after the interviews were calculatedand the change in score was found to range from −12 to 14.Based on the median change of 3.0, the 21 patients weredivided into an effective group (scores from 3 to 14) and anon-effective group (scores from −12 to <3).

Results

Factors in the Bereavement Life Review with an associa-tion with improvement of spiritual well-being were identi-fied by correspondence analysis. This accounted for 80% ofthe variance, indicating the validity of the analysis. Thefragments found in the correspondence analysis and theresults of the significance test are shown in Tables 1 and 2for the effective and non-effective groups, respectively. Ahigh score in these tables indicates a fragment in thenarrative that contributed to the efficacy of the therapy. Themost important fragments were tabulated after performanceof the significance test. We referred to three factors in eachgroup.

In the effective group (Table 1), fragments such as“Mother,” “Father” or “Going on an overseas trip” rankedhigh and we classified these as “good memories of family.”

Table 1 Fragments chosen by bereaved family members in the effective group

Rank >12 to ≤14 Scores >8 to ≤10 Scores >5 to ≤8 Scores ≥3 to ≤5 Scores

1 Mother 7.07 Husband 5.35 Rehabilitation 3.08 Wife 9.50

2 My parents’ home 4.34 Carefree life 3.81 Last 2.96 Elders’ club 3.61

3 Not being settled 3.52 Sense of loss 3.81 I was permitted to doeverything.

2.78 Many thingshappened.

2.76

4 Father 3.35 My brain began tobecome active.

3.81 My father moved into aprivate room.

2.78 Lucky 2.76

5 Pet 3.04 I was surprised. 2.93 Everyone 2.44 Various matters 2.24

6 My father could not eat. 3.04 Remembering 2.46 1-year memory 2.44 My wife hadgood taste.

2.24

7 Going on an overseas trip 2.49 I had lost interest. 2.39 Last birthday party 2.44 Department 2.24

8 Maruyama vaccination 2.49 Regret for not leaving 2.39 Sedation 2.44 Process 2.24

9 My father had pain. 2.49 I did not think ofsuicide.

2.39 Red cross hospital 2.44 Recurrence 2.24

10 Pass 2.49 I confronted problems. 2.39 My mother was confinedfor 16 years.

2.06 I lost my job. 2.24

Support Care Cancer (2011) 19:309–314 311

Fragments such as “husband,” “sense of loss,” and “mybrain began to become active” also ranked highly and wereclassified as “loss and reconstruction.” Fragments such as“rehabilitation,” “last,” and “last birthday party” were alsocommon and were classified as “pleasant memories of lastdays.”

In the non-effective group (Table 2), fragments such as“keeping my home is my role,” “struggling with husbandmemories,” and “I was possessed by my husband’s soul”ranked high and were classified as “suffering withmemories.” Fragments such as “scattering ashes” and“husband requested scattering ashes funeral style” alsoranked high and were classified as “disagreement onfuneral arrangements.” Fragments such as “sense of guilt,”“nursing care,” and “regret” were also common and wereclassified as “regret and sense of guilt.”

Discussion

In the effective group, “good memories of family,” “lossand reconstruction,” and “pleasant memories of lastdays” were identified as common factors. “Good mem-ories of family” indicates that good memories promotedthe life review and improved the spiritual well-being ofthe bereaved families. Those family members with goodfamily memories had good human relationships, and theimportance of good human relationships for Japanesesubjects is in accord with the findings of previous studies[21, 26]. “Loss and reconstruction” indicates that familieswho had grieved sufficiently might then be able to

reconstruct their life. This supports the finding thatspiritual growth during bereavement occurs only when aperson spends time in both the loss-oriented andrestoration-oriented areas [27, 28]. “Pleasant memories oflast days” indicates that bereaved family members whohad enjoyed a good time, such as talking or eating, withthe patient in the PCU retained precious memories thatimproved spiritual well-being.

Considering these factors, we present a new model, theMemory Reinforce theory

In this model, the Bereavement Life review reinforces goodpast memories of the bereaved families who had goodmemoirstoward acceptance of loss. It also promotes the bereaved whohad bad or bitter memories associated with a patient’s death togrieve fully, and it changes bad or bitter memories to goodmemories. Also, it reinforces the nearest pleasant memories oflast days toward beautiful memories (Fig. 1).

In the non-effective group, “struggling with memories,”“disagreement on funeral arrangements,” and “regret and

Table 2 Fragments chosen by bereaved family members in the non-effective group

Rank ≥ −12 to <−1 Scores ≥ −1 to <1 Scores ≥1 to <2 Scores ≥2 to <3 Scores

1 Keeping my home ismy role.

3.72 Scattering ashes 4.80 Mother 4.46 I should have talkedwith my mother.

2.81

2 I have positivethinking.

2.99 Have gone on a trip 2.73 Seeming to livelonger

3.49 Living for all myworth

2.81

3 My father was strict. 2.55 Husband requestedscattering ashesfuneral style

2.33 Sense of guilt 2.53 My children werecollege students.

2.81

4 I have lost interest. 2.06 Fukuoka 2.33 Nursing care 2.25 My encounter isimportant

2.81

5 Struggling with husband’smemories

2.06 Certification of a helper 1.85 Regret 2.14 Changing clothes 2.81

6 I was possessed bymy husband’s soul.

2.06 Kumamoto 1.85 Not being able togive hopeful care

2.14 My mother hadproblems.

2.81

7 Now 2.03 Dazaifu (funeral place) 1.85 Mission and dutyof taking care

1.69 My mother worked. 2.81

8 Not proud 1.53 Having seen a patient 1.85 I was told to cutthe grass.

1.69 My mother died. 2.01

9 I went on errands. 1.45 Hospice 1.80 Thanks for mother 1.69 The hospice wardwas good

1.26

10 Birthday party with agreat grandchild

1.45 Husband 1.78 I was born with mymother.

1.69 Children 1.06

Past Good memories

BereavementLife Review

Good evaluation

Bitter or badmemories


Goodevaluation

Memories of last moment


Good evaluation

Fig. 1 Memories reinforcement model from the effective group


sense of guilt” were identified as common factors.“Suffering with memories” indicates that the families weregrieving or mourning for the deceased. One woman saidthat “my husband’s soul comes to me” and she could notenjoy her memories of her husband. “Disagreement onfuneral arrangements” indicates problems among familymembers associated with the funeral, which may havecaused bad relationships. One man desired “scatteringashes” and his family had agreed, but other relativesdisagreed. A grave after a funeral is a place of peace formany Japanese people and disagreement on this issue is animportant factor [29]. “Regret and sense of guilt” suggeststhat some of the bereaved family members felt regret andguilt because they thought they had not visited the patientsufficiently or that their choice of medical treatment orplace of recuperation was inappropriate. This supports theidea that people who cannot accept the past and resolvetheir regret are often self-critical and incapable of acceptingtheir imperfections and limitations [30].

It is a wonder that the Bereavement Life Review is notso effective for the bereaved families in the non-effectivegroup because they might be in the middle of the griefprocess and their spiritual well-being did not improvethrough this therapy in the present study. Thus, we need toexamine their state of mind for a longer time with moreinterview sessions, and if this therapy is not effective eventhough there are many sessions, other kinds of interventionslike mindfulness [31, 32], cognitive behavior therapy [33],or support group might be effective.

The limitations of the study include a relatively smallnumber of participants and that almost all the participantshad good relationships with the deceased; however, therelationships among the bereaved family members may nothave always been good. These factors make it difficult togeneralize the findings and further studies are needed toconfirm the present results. Within these limitations, weconclude that the Bereavement Life Review is likely to beeffective for bereaved families who have good memories ofa deceased relative with whom they had a relativelypleasant time in the last days and who have undergonesufficient grieving and tried to reconstruct their lives.

Acknowledgments This study was supported by the Japan HospicePalliative Care Foundation.

Conflict of interest None

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Bereavement life review improves spiritualwell-being and ameliorates depression amongAmerican caregivers

MICHIYO ANDO, R.N., PH.D.,1 FELICIA MARQUEZ-WONG, L.S.W., Q.C.S.W., C.T.,2

GARY B. SIMON, B.A.,2 HARUKO KIRA, M.A.,3 AND CARL BECKER, PH.D.41Faculty of Nursing, St. Mary’s College, Fukuoka, Japan2St. Francis Hospice, Honolulu, Hawaii3Graduate School, Kurume University, Kurume, Japan4Kokoro Research Center, Kyoto University, Kyoto, Japan

(RECEIVED October 15, 2013; ACCEPTED January 6, 2014)

ABSTRACT

Objective: The aim of our study was to investigate the utility of bereavement life review (BLR) toelevate spiritual well-being and alleviate depression among Hawaiian-American caregivers,and to identify changes that occur when caring for their loved ones up to the time of death.

Method: Bereavement life review therapy was provided for 20 bereaved Hawaiian Americans.In the first session, subjects reviewed memories of the deceased with a therapist, who recordedtheir narratives and collected them into a personal history book. During the second session,subjects discussed the contents of this book. Caregivers completed the Functional AssessmentChronic Illness Therapy–Spiritual (FACIT–Sp) questionnaire and the Beck DepressionInventory, Second Edition (BDI-II) pre- and post-intervention. Subjects also described changesin their views that occurred during the caring process in response to questions.

Results: FACIT–Sp scores significantly increased from 34.1+9.63 to 36.3+10.6 (t ¼ –2.6,p , 0.05, and BDI scores significantly decreased from 11.7+7.7 to 8.8+7.0 (t ¼ 2.27, p , 0.05).Five categories were chosen from the narratives on changes that had occurred during caregivingand due to the deceased death: “Learning from practical caring experience,” “Positiveunderstanding of patients,” “Recognition of appreciation,” “Self-change or growth,” and“Obtaining a philosophy.”

Significance of Results: These findings show the applicability of bereavement life reviewtherapy for Hawaiian families, including efficacy for spiritual well-being and depression. Thecomments of the caregivers also indicate the potential of the therapy for identifying the positiveaspects of caring for terminally ill patients.

KEYWORDS: Bereavement life review (BLR), Spiritual well-being, Depression

INTRODUCTION

Bereaved families often experience physical or psy-chological problems arising from grief (Burnell &Burnell, 1989; Stroebe et al., 2007). Depression is aserious psychological distress for bereaved familycaregivers (Shear, 2009), and grief may entail de-

pressive symptoms (Bruce et al., 1990), major de-pression (Zisook & Shucter, 1993), and minordepression (Zisook, 1995). Since advanced andserious depression may cause hopelessness (Priger-son et al., 1995), which has been linked to suicide(Christakis & Allison, 2006), depression is a particu-larly important concern. In addition, some familymembers may lose the meaning or purpose of theirlives following a relative’s death; such suffering is re-ferred to as spiritual pain. Murata and Morita (2006)demonstrated that spiritual well-being is associated

Address correspondence and reprint requests to: Michiyo Ando,St. Mary’s College, Tsubuku Honmachi 422, Kurume City,Fukuoka, Japan. E-mail: [email protected]

Palliative and Supportive Care (2015), 13, 319–325.# Cambridge University Press, 2014 1478-9515/14doi:10.1017/S1478951514000030

319


with peace of mind and meaning to live, whileMurray and colleagues (2010) found that family care-givers experience social, psychological, and spiritualsuffering.

Bereavement life review (BLR) is a form of psycho-therapy that includes just two sessions that can beemployed to improve these feelings (Ando et al.,2010). The bereaved family member reviews memor-ies of the deceased during the first session with a psy-chotherapist. The therapist constructs a personalhistory book after the first session, and the bereavedfamily member reviews it with the therapist in a ses-sion held two weeks later. Ando and coworkers (2010)examined the effect of this therapy for bereaved fa-mily members whose deceased relative was treatedand died in a palliative care ward and found thatthe therapy alleviated depression and elevated spiri-tual well-being.

Palliative care wards offer specialized care forpatients, and families receive more care than that gi-ven in general wards. It is thus possible that BLRmight be useful only in these circumstances. Toshow that this therapy can be extended to any be-reaved family member, we first demonstrated its uti-lity for depression and spiritual well-being inbereaved family members whose relative did notstay on a palliative care ward (Ando et al., 2013). Asthe next stage, we wanted to investigate its utilityin a population outside Asia, since BLR was devel-oped in Japan, and it was unclear whether it wouldbe useful for bereaved family members in Westernnations. For this purpose, we chose a Hawaiian popu-lation, since about 40% of the this population is Asian,and the second most common population group in Ha-waii is Japanese American (Wikipedia, 2013).

Bereaved family caregivers often say that they havegrown or matured through caregiving. One studyfound that there are positive and negative life changesthat may occur after bereavement (Lehman et al.,1993). The positive and negative aspects of caregivingfor bereaved family members have also been demon-strated in Japan (Sanjo et al., 2009). These studiessuggested that post-bereavement reflection can elicitpositive thoughts due to caring for a dying patientand that BLR may prompt respondents to recognizethe positive aspects of their caregiving activities.

The primary aim of our study was to investigatethe effects of BLR on depression and spiritual well-being in bereaved Hawaiian family members. Sincethis was the first attempt to adapt this therapy out-side of Japan, we did not employ a control group,the number of our participants was limited, and weconsidered the work to be a pilot study. Our secondaim was to examine bereaved family members’ narra-tives about the changes they experienced throughcaring.

METHODS

Participants

Social workers in a Honolulu hospital identifiedadults bereaved within the previous two years(mean, 14 months) due to a cancer death at home orin a palliative care unit (PCU). All subjects werecapable of completing the questionnaires withoutpsychological distress. The social workers recruitedbereaved participants by telephone and visited thehomes of those who agreed to participate. Twenty be-reaved Hawaiian Americans (6 men and 14 women)aged mainly in their 60s finally participated in BLRtherapy (Table 1). The ethical and scientific validityof the study was approved by the institutional reviewboard of St. Mary’s College, Fukuoka, Japan.

PROCEDURE

Social workers or nurses conducted bereavement lifereviews for each bereaved caregiver. The therapy con-sisted of two 30- to 60-minute interview sessionsspaced two weeks apart. In the first session, thetherapist asked the following questions:

1. What is the most important thing in your life,and why?

2. What are your most vivid memories of the de-ceased patient?

3. What is your most pleasant memory in caringfor the patient?

4. What growth did you experience through takingcare of the patient?

Table 1. Background of bereaved family members(n ¼ 20)

Number (n) Percentage (%)

Mean age 64.3 100Gender

Male 6 30Female 14 70Total 20 100

ReligionYes 12 60No 8 40Christian 3 15Buddhist 2 10Other 7 35None 8 40

Time bereavedLess than 1 year 7 35More than 1 year 13 65

Mean 14 months

Ando et al.320

5. What is the most important role you haveundertaken in your life?

6. What are you proudest of in your life?

The narratives of the subjects were transcribed ver-batim, and the therapist utilized the narratives toconstruct a personal history book. The therapist pas-ted magazine photos or drawings illustrating thesubjects’ keywords to beautify the book and provokememories. During the second session, the patientand therapist reviewed the album and discussed itscontents.

Outcome Measures

The Functional Assessment Chronic IllnessTherapy–Spiritual (FACIT–Sp) (Peterman et al.,2002; Noguchi et al., 2004) Questionnaire was em-ployed to measure spirituality. Items were scored on5-point scales ranging from 4 (strongly agree) to 0(strongly disagree). The Beck Depression Inventory,Second Edition (BDI-II) (Beck et al., 1996) was uti-lized to measure depression. The BDI-II includes 21items scored on a 4-point scale, ranging from 3(strongly agree) to 0 (strongly disagree). The validityand reliability of the FACIT–Sp and BDI-II are wellestablished.

Data Analysis

FACIT–Sp and BDI-II scores were calculated for eachbereaved family caregiver and used in statisticaltests conducted with SPSS, version 21. Comparisonsof FACIT–Sp and BDI-II scores pre- and post-inter-vention were performed by a t test. Narrative datawere subjected to qualitative analysis (Funashima,2001, based on Berelson, 1952), which involves creat-ing codes, subcategories, and categories. Narrativereferences were employed to examine how caregivershad changed through caregiving and bereavement.Sentences were separated into their shortest mean-ingful units, referred to as codes. Codes with similarmeaning were integrated into subcategories, andsubcategories with similar meaning were groupedinto categories. To ensure reliability and validity, in-consistencies were discussed among the researchersuntil agreement was reached.

RESULTS

After bereavement life review, FACIT–Sp scores sig-nificantly increased from 34.1+9.63 to 36.3+10.6(r ¼ –2.6, p , 0.05, n ¼ 20), while BDI scores signifi-cantly decreased from 11.7+7.7 to 8.8+7.0 (t ¼2.27, p , 0.05, n ¼ 20). These results are depictedin Figure 1.

From the qualitative analysis (Table 2), five cat-egories (in italics below) were chosen from narrativesdescribing changes through caring experiences.There were a total of 64 codes.

The family caregivers initially thought they couldnot care for their loved ones, but they patiently ac-quired knowledge and skills, and some came to ex-perience caring as a meaningful role. We groupedsuch comments into the subcategories of “Recog-nition of mental power of caring,” “Learning knowl-edge and skills for caring,” and “Learning to havepatience,” and integrated these subcategories intoLearning from practical caring experience. To de-scribe their attempts to communicate better, to sharewholeheartedly, and to be considerate to patients,we defined subcategories of “Communication withpatients,” “Sharing everything with patients,” and“Considering patients,” and integrated these intoPositive understanding of patients. Most bereaved fa-mily caregivers appreciated help from others, andsome even wanted to pay for this help. We namedthis single subcategory and its higher level categoryRecognition of appreciation.

The experience of caring provided some bereavedfamily caregivers with insight into their ownminds; no longer worrying about trivialities, theybecame kinder or more spiritual. To describe thesecomments, we chose subcategories such as “Insightinto my mind,” “Having a broader mind,” “Beingkind to others,” and “Recognition of spiritualityand important things,” and we integrated theminto Self-change or growth. Finally, some care-givers developed a philosophy of human support,acquiring strength to live, found new ways to copewith their suffering, changed their viewpoints orvalues, or found clues to future living. We definedthese subcategories as “Supporting each other,”“Finding the will to live,” “Finding a new roadin life,” “Altering values in the world,” and“Suggesting how to live in the future,” and we inte-grated these subcategories into the category Ob-taining a philosophy.

The following response to the question “Whatgrowth did you experience in taking care of your

Fig. 1. Score changes on the FACIT–PS and BDI pre and post.

Bereavement life review therapy 321

Table 2. Categorization of the narratives of bereaved family members

Category Subcategory Codes

Learning from practical caring experience † Recognition of mental power for caring † I recognized that I had the mental power for caring.

† I found the ability to care.

† Learning knowledge and skills for caring † I learned the skills of care.

† I learned knowledge of caring for the patient.

† Recognition of care as a role † I thought that caring for the patient was my role.

† I was able to understand what I should do.

† Learning to have patience † I developed patience through caring.

† I could give care without asking for help.

Positive understanding of patients † Communication with patients † I tried to communicate with my son.

† Sharing everything with patients † I tried to share my thoughts with my son.

† I could share everything with the patient.

† The patient and I could understand each other.

† Considering patients † I thought that the patient might suffer more than I.

Recognition of appreciation † Appreciation of others † I found support from others.

† I came to appreciate others.

† Repaying help received † I thought that I have to pay back the love I received.

† I will pay back by helping others.

Self-change or growth † Insight into my mind † I came to see myself much more objectively.

† I came to see my own mind in providing care to the patient.

† Having a broader mind † I started to accept all kinds of things.

† I stopped worrying about small matters.

† Being kind to others † I came to have sympathy for other persons.

† I could understand others who were in the same situation.

Continued

An

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l.322

loved one?” is illustrative of the kind of interview datawe collected:

Uh, I think that I became more spiritual. I nowhave a sense of well-being because I attend a Chris-tian church, and I started learning the Bible andstarted to think to myself because of the sicknessthat we went through that I owe a lot of people;not really owe, but I feel in my heart that I needto pay back the grace that I’ve gotten by helpingothers with the, specifically with sickness anddeath. And I’ve offered my assistance, so far, totwo people. Even though they may not have saidanything yet, in my heart I know I did it, and I’mwilling.

DISCUSSION

Spiritual Well-Being and Depression

The significant increase in FACIT–Sp scores sug-gests that BLR improved the spiritual well-being ofthe bereaved. These results are consistent with thosefor bereaved Japanese people found earlier by Andoand colleagues (2010), and thus BLR therapy seemsto be applicable to Americans in Hawaii. The meanFACIT–Sp scores of the Japanese subjects changedfrom 19.9 to 22.8, whereas those of the American sub-jects changed from 34.1 to 36.3. Although the Hawai-ian interviews were conducted closer to the time ofbereavement than the Japanese, the American sub-jects showed higher levels of spiritual well-being.

Two factors may affect this difference. First, it maybe related to religious affiliation, since 60% of theAmerican subjects acknowledged affiliation withsome kind of religion compared to 24% of Japanesesubjects. The FACIT–Sp asks about religion andmeaning of life, so that subjects more willing toexpress religious preferences score higher on the FA-CIT–Sp. Second, the Hawaiian Americans empha-sized Learning from practical caring experience orPositive understanding of patients, which very fewJapanese subjects mentioned, and these changesmay have enhanced their spiritual well-being orvice versa.

The significant reduction in BDI scores suggeststhat BLR reduces depression. A score greater than17 on the BDI indicates clinical problems. Since themean scores of the subjects were 11.7 (pre) and 8.8(post), the mean level of depression had not reachedclinical levels. However, the 8 subjects (40%) withpre-intervention scores greater than 17 showedmarkedly decreased scores after the review. Themean BDI score of Japanese subjects (Ando et al.,2010) decreased from 10.8 to 6.8, showing a tendencyT

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similar to, but not stronger than, that of Americansubjects.

The reasons for the efficacy of BLR with de-pression may include: (1) the participant’s opportu-nity to freely voice grief, (2) the therapist’s attentivelistening and expression of care, and (3) the life re-view, focusing on the deceased, allowing family care-givers to discover new meaning in caregiving andenabling them to reinterpret and reconstruct theirlives. It has previously been suggested that thera-peutic life review should include both good memoriesand less positive memories (Haight, 1988). With theelevation of spiritual well-being and reduction in de-pression, BLR may serve usefully as a form of psycho-logical care, in addition to cognitive-behavioral grieftherapy and family-focused grief therapy.

Changes Through Caring for a Loved One

The categories we derived from caregiver narrativessuggest that caregivers undergo a process of movingfrom Learning from practical caring experience andPositive understanding of patients to Recognition ofappreciation and Self-change or growth or Obtaininga philosophy.

A comparison of American and Japanese culturaldifferences in categories of positive experiences incaregiving is presented in Table 3. Sanjo and col-leagues (2009) found four categories in the Caregiv-ing Consequence Inventory (CCI) among Japanesesubjects: “Appreciation of others,” “Meaning of life,”“Reconstruction of priority order,” and “Mastery.”Our category Recognition of appreciation mirrorsSanjo’s “Appreciation of others,” while our Self-change or growth resembles “Meaning of life,” andObtaining a philosophy parallels “Reconstruction ofpriority order.” These similarities suggest that be-reaved family caregivers chose such similar factorsas appreciation of others, experience of self-growth,and finding new ways to live, thus transcending cul-tural differences.

Conversely, Japanese subjects did not mentionLearning from practical caring experience or Positiveunderstanding of patients, whereas American sub-jects did. Bereaved American family members devel-oped caring abilities and tried to communicate moreintimately than before, whereas Japanese familiesexpressed more difficulty in caring. Ishi and co-workers (2012) found that caregivers feel the mostdifficulties with “patient’s pain and condition.”Ando and colleagues (2013) suggested that difficul-ties in caring lead to complicated grief; however, dif-ficulties in caring for Americans may instead lead tolearning from the caring experience. The differencein research and protocol design renders further com-

parison inappropriate, and comparative studiesusing identical procedures are required.

CLINICAL IMPLICATIONS ANDLIMITATIONS

We found that bereavement life review elevated spiri-tual well-being and alleviated depression in bereavedHawaiian-American families. These findings suggestthe potential cross-cultural applicability of this inter-vention, which does not require high levels of pro-fessional training. With a modicum of training inlife review, community nurses who provide bereave-ment care (Brownhill et al., 2013) may also findBLR useful.

There are some limitations to our present study:(1) the number of participants was small and somewere Asian Americans, so our tentative comparisonof cultural similarities and differences may not

Table 3. Comparison of American and Japanesecategories of positive experiences of caregiving

American/Hawaiian(Present Study) Japanese (Sanjo et al., 2009)

† Learning frompractical caringexperiencee.g., learningknowledge and skillsfor caring

None

† Positiveunderstanding ofpatientse.g., sharingeverything withpatients

None

† Recognition ofappreciatione.g., appreciation ofothers’ help

† Appreciation of otherse.g., I came to appreciateothers more.

† Self-change orgrowthe.g., recognition ofspirituality

† Meaning of lifee.g., I came to findpurpose and sense ofmeaning in my life.

† Obtaining aphilosophye.g., finding a newroad in life

† Reconstruction ofpriority ordere.g., I came to noticewhat is really importantin my life.

None † Masterye.g., I learned to copebetter with my life.

Ando et al.324

reflect the American population as a whole; (2) therewas no control group, and this is required to confirmthe efficacy of BLR, so generalization of our resultsrequires further studies with more participants;and (3) although there were significant statisticaldifferences, this does not always translate to clinicalsignificance. We need to confirm the results by meansof future study.

CONFLICTS OF INTEREST

The authors declare no conflicts of interest.

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Burnell, G.M. & Burnell, A.L. (1989). Clinical manage-ment of bereavement: A handbook for healthcare pro-fessionals. New York: Human Sciences Press.

Christakis, N. & Allison, P. (2006). Mortality after the hos-pitalization of a spouse. The New England Journal ofMedicine, 354, 719–730.

Funashima, N. (2001). Shitsuteki kenkyu heno cyosen[Challenge of qualitative analysis]. Osaka: Igakusyoin.

Haight, B.K. (1988). The therapeutic role of a structuredlife review process in homebound elderly subjects. Jour-nal of Gerontology, 43, 40–44.

Ishii, Y., Miyashita, M., Sato, K., et al. (2012). A family’s dif-ficulties in caring for a cancer patient at the end of life athome in Japan. Journal of Pain and Symptom Manage-ment, 44, 552–562.

Lehman, D.R., Davis, C.G., Delongis, A., et al. (1993). Posi-tive and negative life changes following bereavementand their relations to adjustment. Journal of Socialand Clinical Psychology, 12, 90–112.

Murata, H. & Morita, T. (2006). Conceptualization of psy-cho-existential suffering by the Japanese Task Force:The first step of a nationwide project. Palliative & Sup-portive Care, 4, 279–285.

Murray, S.A., Kendall, M, Boyd, K., et al. (2010). Archety-pal trajectories of social, psychological, and spiritualwellbeing and distress in family caregivers of patientswith lung cancer: Secondary analysis of serial qualitat-ive interview. BMJ, 340, c2581.

Noguchi, W., Ono, T., Morita, T., et al. (2004). An investi-gation of reliability and validity to Japanese versionof the Functional Assessment of Chronic IllnessTherapy–Spiritual (FACIT–Sp). Japanese Journal ofGeneral and Hospital Psychiatry, 16, 42–47.

Peterman, A.H., Fitchett, G., Brady, M.J., et al. (2002).Measuring spiritual well-being in people with cancer:The Functional Assessment of Chronic IllnessTherapy–Spiritual Well-Being Scale (FACIT–Sp). An-nals of Behavioral Medicine, 24, 49–58.

Prigerson, H.G., Frank, E. & Kasl, S.V. (1995). Complicatedgrief and bereavement-related depression as distinctdisorders: Preliminary empirical validation in elderlybereaved spouses. The American Journal of Psychiatry,152, 22–30.

Sanjo, M., Morita, T., Miyashita, M., et al. (2009). Care-giving Consequences Inventory: A measure for eva-luating caregiving consequences from the bereavedfamily caregiver’s perspective. Psycho-Oncology, 18,657–666.

Shear, M.K. (2009). Grief and depression: Treatment de-cisions for bereaved children and adults. The AmericanJournal of Psychiatry, 166, 746–748.

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Zisook, S. (1995). Death, dying and bereavement. In Com-prehensive textbook of psychiatry. H.I. Kaplan & B.J. Sa-dock (eds.), 6th ed., pp. 2383–2389. Baltimore: Williamsand Wilkins.

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http://ja.wikipedia.org/wiki/%E3%83%8F%E3%83%AF%E3%82%A4%E5%B7%9E



Original Article

The Impact of Supporting Family Caregivers Before

Bereavement on Outcomes After Bereavement: Adequacy

of End-of-Life Support and Achievement of Preferred Place

of DeathSamar M. Aoun, BSc(Hons), MPH, PhD, Gail Ewing, BSc, PhD, Gunn Grande, BA(Hon), MPhil, PhD,Chris Toye, RN, BN (Hons), PhD, and Natasha Bear, BSc, Masters BiostatisticsSchool of Nursing, Midwifery and Paramedicine (S.M.A., C.T.), Curtin University, Perth, Western Australia; Adjunct Professor (S.M.A.),

LaTrobe University, Melbourne, Victoria, Australia; Centre for Family Research (G.E.), University of Cambridge, Cambridge; Division of

Nursing, Midwifery & Social Work (G.G.), The University of Manchester, Manchester, United Kingdom; Centre for Nursing Research (C.T.),

Sir Charles Gairdner Hospital, Perth, Western Australia, Australia; and Department of Clinical Research and Education (N.B.), Child and

Adolescent Health Services, Perth, Western Australia, Australia

AbstractContext. The investigation of the situation of bereaved family caregivers following caregiving during the end-of-life phase

of illness has not received enough attention.

Objectives. This study investigated the extent to which using the Carer Support Needs Assessment Tool (CSNAT)

intervention during the caregiving period has affected bereaved family caregivers’ perceptions of adequacy of support, their

grief and well-being, and achievement of their preferred place of death.

Method. All family caregivers who participated in a stepped-wedge cluster trial of the CSNAT intervention in Western

Australia (2012e2014) and completed the pre-bereavement study (n ¼ 322) were invited to take part in a caregiver survey by

telephone four to six months after bereavement (2015). The survey measured the adequacy of end-of-life support, the level of

grief, the current physical and mental health, and the achievement of the preferred place of death.

Results. Theresponse ratewas66%(152, intervention; 60, control).The interventiongroupperceived that theirpre-bereavement

support needshadbeenadequatelymet to a significantly greater extent than the control group (d¼ 0.43,P< 0.001) and thatpatients

have achieved their preferred place of deathmore often according to their caregivers (79.6% vs. 63.6%, P¼ 0.034). There was also a

greater agreement on the preferred place of death between patients and their caregivers in the intervention group (P ¼ 0.02).

Conclusions. The results from this study provide evidence that the CSNAT intervention has a positive impact on perceived

adequacy of support of bereaved family caregivers and achievement of preferred place of death according to caregivers. The

benefits gained by caregivers in being engaged in early and direct assessment of their support needs before bereavement

reinforce the need for palliative care services to effectively support caregivers well before the patient’s death. J Pain Symptom

Manage 2018;55:368e378. � 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Key Words

CSNAT, family caregivers, pre-bereavement, post-bereavement, place of death, grief, well-being, support needs

BackgroundTwo of the most stressful human experiences are

caring for a person with a terminal illness and the

death of that person. As the majority of deaths world-wide are currently caused by life-limiting illnesseswith a significant proportion of these deaths

Address correspondence to: Samar M. Aoun, BSc(Hons), MPH,PhD, School of Nursing, Midwifery and Paramedicine, Cur-tin University, Perth, Western Australia, Australia. E-mail:[email protected]

Accepted for publication: September 21, 2017.

� 2017 American Academy of Hospice and Palliative Medicine.Published by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterhttps://doi.org/10.1016/j.jpainsymman.2017.09.023

368 Journal of Pain and Symptom Management Vol. 55 No. 2 February 2018

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https://doi.org/10.1016/j.jpainsymman.2017.09.023



occurring in old age, the investigation of the situa-tion of bereaved family caregivers after caregivingduring the end-of-life phase of illness has notreceived enough attention.1

There is evidence to suggest that family caregiverswho have cared for a relative/friend throughout alife-limiting illness are adversely affected duringbereavement due to their caregiving role.2e5 Nielsenet al.6 reported that severe grief and depressive symp-toms already existing before the patient’s deathstrongly predicted complicated grief and postlossdepressive symptoms. They also found that the levelsof grief and depressive symptoms were higher duringcaregiving than six months after the loss.

Studies have reported that reducing the burden ofcaregiving can prevent postdeath psychiatricmorbidity3,4 and that caregivers’ limited preparednessfor the impending death was associated with increasedcomplicated grief, depression, and anxiety.7,8 It hasbeen suggested that surviving spouses of peopleadmitted to a hospice have lower mortality comparedto those whose spouses are not, due to hospice servicespreparing the family for the imminent death.9 Theextent to which caregivers are prepared or ready forthe death of their family member comprises several di-mensions: clinical, practical, psychosocial, and spiri-tual.10 Communication between caregivers andhealth care professionals is crucial to aid preparednessin all these dimensions.7,8

Other factors that may also impact post-bereave-ment outcomes of family caregivers are the locationof death, the fulfillment of the patient’s or caregiver’spreferred place of death, or the perception that theplace of death had been the right place according tothe bereaved family caregivers11e14 though the evi-dence is conflicting. The importance of meeting the

patient and family preferences has been reported tohave a strong impact on the actual place of death.12

As family caregivers experience support needs in anumber of the mentioned dimensions, it has beenchallenging to find accessible and acceptable inter-ventions that address the range of needs.15 TheCarer Support Needs Assessment Tool (CSNAT) isan evidence-based and validated tool for thecomprehensive assessment of caregivers’ supportneeds in all the domains of end-of-life care, and itis delivered through a person-centered approachthat is led by the caregiver but facilitated by thehealth professional.16e18 The CSNAT is structuredaround 14 broad support domains which fall intotwo distinct groupings: support that enables thefamily caregiver to care for the care recipient athome (seven domains) and direct support for thefamily caregiver in their caring role (seven do-mains). The CSNAT approach provides an opportu-nity to open up a conversation with caregivers, tounderstand their individual support needs and thesupport they would find helpful. The CSNAT inter-vention comprises the tool integrated into theperson-centered approach.16

Two trials of the CSNAT intervention were conduct-ed in Australia, one in a community palliative caresetting (described in Table 1) and one in a hospitalsetting. Results showed a significant reduction in care-giver strain during the caregiving period in commu-nity palliative care,21 and family caregivers of olderpeople discharged home from hospital were signifi-cantly more prepared to provide care and reportedreduced caregiver strain and distress compared tofamily caregivers in a control group.24 The trial ofthe CSNAT within palliative home care in the UK25

found a small reduction in early grief, improvements

Table 1Brief Description of the Australian CSNAT Trial in Community Palliative Care

The overall aim of this trial was to investigate the extent to which a carer assessment tool of support needs in end-of-life home care improvesperceived support, carers’ psychological and physical well-being, caregiver workload, grief, and the likelihood of the patients achieving theirpreferred place of death, hence spanning the pre-bereavement and post-bereavement phases.

A stepped-wedge cluster design was used to trial the Carer Support Needs Assessment Tool (CSNAT) intervention in three bases of thepalliative care service in Western Australia, 2012e2014. The outcome measures for the intervention and control groups, at the pre-bereavement phase, were caregiver strain and distress as measured by the Family Appraisal of Caregiving Questionnaire,19 caregiver mentaland physical health as measured by Short Form Health Survey (SF12v2),20 and caregiver workload as measured by extent of caregiverassistance with activities of daily living, at baseline and follow-up. Total recruitment was 620. There was 45% attrition for each group betweenbaseline and follow-up mainly due to patient deaths resulting in 322 caregivers completing the study (233 in the intervention group and 89in the control group). At follow-up, the intervention group showed significant reduction in caregiver strain relative to controls, P ¼ 0.018,d ¼ 0.348 (95% CI 0.25e0.41). Priority support needs identified by caregivers included knowing what to expect in the future, having timefor yourself in the day, and dealing with your feelings and worries. The detailed description of the intervention and methodology of the pre-bereavement phase is described in the study by Aoun et al.21 There was also positive feedback on using the CSNAT from family caregivers22

and nurses.23

Brief description of the interventionThe CSNAT intervention consisted of at least two visits from nurses to caregivers, two to three weeks apart, where nurses incorporated the

CSNAT into a practitioner-facilitated but caregiver-led approach to needs assessment and support. Family caregivers identified domainswhere they needed more support. This was accomplished by the CSNAT being either self-completed by the family caregiver or completedjointly with the nurse. Then, a conversation took place to determine individual needs, and the caregiver’s priorities were discussed with thenurse to agree on actions/solutions and a shared action plan. The control group received ‘‘standard practice’’ that consisted of the staffmeeting with the caregiver during the client visit and discussing caregiver needs on an informal and ad hoc basis that was not documented.

Vol. 55 No. 2 February 2018 369The Impact of Supporting Family Caregivers Before Bereavement

in mental and physical health after bereavement, andan increase in the probability of death at home.

This article reports on the second phase of theAustralian community palliative care trial (describedin Table 1), the follow-up at the post-bereavementphase.

ObjectivesThis study investigates the extent to which using the

CSNAT intervention during the caregiving period hasaffected bereaved family caregivers’ perceptions of ad-equacy of support, their grief and well-being, andachievement of their preferred place of death.

MethodsData Collection (the Caregiver Survey)

All family caregivers who completed the pre-bereavement phase (n ¼ 322) were invited to takepart in a caregiver survey by telephone four tosix months after bereavement (2015).

Demographic information was already availablefrom the pre-bereavement phase of the study. Bothintervention and control groups completed thefollowing primary and secondary outcome measuresat post-bereavement:

The primary outcome measure was the perceivedadequacy of support provided for the caregiver duringend-of-life care which was measured using the 14 ques-tions of the CSNAT domains, revised to the format‘‘Did you need more support with’’ (responses:1 ¼ no; 2 ¼ a little more; 3 ¼ quite a bit more;4 ¼ very much more). These scores were summarizedfor the analysis. The two main groupings of theCSNAT were each summarized and analyzed sepa-rately: the seven domains enabling the caregiver tocare for the patient (CSNAT enabling support do-mains) and the seven domains providing more directsupport for the caregiver’s health and well-being(CSNAT direct support domains).

An additional set consisted of three general ques-tions on whether caregivers had been asked abouttheir support needs, whether they felt their needshad been listened to, and whether there were con-cerns they had been unable to discuss (responses:1 ¼ always, 2 ¼ usually, 3 ¼ sometimes, 4 ¼ never).

There were three secondary outcome measures:

1. Level of grief inbereavementwasmeasuredusingthe Texas Revised Inventory of Grief (TRIG).26

This is a Likert-type measure in two parts. Part1, comprising eight items, measures initial griefat the time of death (TRIG initial). Part 2, with13 items, assesses present grief (TRIG present).It has an internal consistency of 0.77 (Part 1)and 0.86 (Part 2) and a reliability of 0.74 (Part 1)

and 0.88 (Part 2). A higher grief score indicates aworse bereavement outcome.

2. Mental and physical well-being was measuredusing the Short Form Health Survey(SF12v2).20 The SF12v2 consists of 12 questionsrelating to physical health problems, bodilypain, general health perceptions, vitality (en-ergy/fatigue), social functioning, role limita-tions, and general mental health(psychological distress and psychological well-being). Reliability estimates range from 0.93 to0.95. The analysis was undertaken for twoscores: the Mental Component Score (SF12-MCS) and the Physical Component Score(SF12-PCS).20 A higher physical or mentalhealth score indicates a better outcome.

3. Ameasure of achievement of the preferred placeof death was obtained by asking whether theactual place of death (home, hospice, hospital,nursing/residential home, other) was thepreferred option for the patient (according tothe family caregiver, with responses yes, no, notdiscussed) or the preferred option for the familycaregiver. The three questions were as follows:‘‘Where was the place of death of your lovedone?’’ ‘‘Was that the preferred place of deathfor your loved one?’’ ‘‘Was that your preferredplace of death for your lovedone?’’ A congruenceanalysis was undertaken between actual andpreferred place of death for each group.

Statistical AnalysesAnalysis of the trial was on a per-protocol basis.

Continuous variables were reported as means andstandard deviations and categorical variables as fre-quencies and proportions. Differences betweengroups for continuous variables were determined us-ing independent t-test, and categorical data usingchi-square or Fisher’s exact test (when expected cellcounts <5).Congruence between preferred and actual place of

death was computed as the number of patients whodied in their preferred locations divided by all pa-tients/caregivers with preferences. A difference inproportions was determined using chi-square orFisher’s exact test.The primary and secondary outcomes were exam-

ined using mixed models accounting for the clustersat the three service bases. Linear mixed models wereused for the continuous data, except for the CSNAToutcomes (direct support, enabling, and total) whereTobit regression was used due to the floor effect. Forquestions with ordinal responses, ordered logisticregression was used producing proportional odds ra-tios. For binary data (yes/no), logistics regressionwas used producing odds ratios. For all models,

370 Vol. 55 No. 2 February 2018Aoun et al.

unadjusted and adjusted analyses were produced withthe control group coded as 0 and the interventiongroup as 1. Models were adjusted for cluster effect,age of caregiver, gender of caregiver, time since death,diagnosis of patient, relationship to care recipient(spouse, child, other), and length of palliative care.For the primary outcome, CSNAT, Cohen’s d wascalculated for statistically significant findings.

All data were analyzed using Stata 14.1 (StataCorp,College Station, TX).27 Statistical significance wasconsidered when P < 0.05.

ResultsTwo-thirds of participants in the pre-bereavement

phase completed the post-bereavement phase of thestudy (212 of 322) (Fig. 1). Reasons for attrition inthe intervention group comprised the following: 28(12%) patients were still alive at the end date of theproject, nine caregivers (4%) declined to participate,and 45 (19%) could not be contacted after three at-tempts or their phone line was disconnected. Reasonsfor attrition were similar for the control group: fourpatients were still alive (5%), two caregivers declined(2%), and 22 were not contactable (25%) (Fig. 1).

Table 2 shows the characteristics of family caregiverswho participated in the post-bereavement study (T3)compared to the larger sample of caregivers whoparticipated in the pre-bereavement study (T2). Thetwo groups did not differ on any characteristics.

The only detected difference between the interven-tion and control groups at the post-bereavementphase (Table 2) was the higher proportion of ‘‘non-cancer’’ diagnoses in the control group and the longerperiod of palliative care, which is similar to the profileat the pre-bereavement phase reported in the study byAoun et al.21

Both groups, when asked in which areas they wouldhave liked more help and support for themselves, pre-dominantly reported ‘‘having time to yourself in theday,’’ followed by ‘‘knowing what to expect in thefuture’’ (Fig. 2). The unmet needs of the controlgroup were more pronounced than those of the inter-vention group in most domains. In particular, the twoareas in the enabling care grouping with significantdifferences (greater unmet need for the control groupcompared to the intervention group) were ‘‘under-standing your relative’s illness’’ (P ¼ 0.026) and‘‘knowing who to contact if concerned’’ (P ¼ 0.028).The summary statistics for the primary and second-

ary outcomes are shown in Table 3. Lower mean scoresare noted for the intervention group on the CSNAT(enabling, direct, and total), indicating lower unmetneed. Similar distribution of responses was seen for‘‘feeling listened to’’ and ‘‘being asked about supportneeds.’’ There was a greater proportion of caregiversin the intervention group who felt that ‘‘sometimes’’they were unable to discuss their concerns. The regres-sion analysis supported this finding with reduced oddsof being able to discuss concerns (OR 0.30: 95% CI0.1e0.5, P < 0.001) (Table 4). Responses to the ques-tion ‘‘Which support needs were you unable to discusswith the nurses and why was this?’’ revealed that themajority of the family caregivers with the ‘‘sometimes’’response (69%) were reporting constraint due to thepresence of the care recipient, be it mother, father, sis-ter, and mainly husband. The following caregiver’scomment describes this situation: ‘‘Difficult to bringup when he was in the room. I would phone thenurses later and I would e-mail his doctor’’ (ID 109).Table 4 outlines the unadjusted and adjusted anal-

ysis for primary and secondary outcomes. The CSNATenabling and total scores demonstrated statistically sig-nificant differences between the groups. The interven-tion group scored on average 2.2 points (95% CI:�2.9, �1.4) less on the CSNAT enabling domainscompared to the controls, indicating lower unmetneed with a moderate effect size (Cohen’s d ¼ 0.43).For the CSNAT total score, the intervention groupscored on average 2.9 points (95% CI: �3.7, �2.1)less compared to the control, with a small-to-moderate effect size (Cohen’s d ¼ 0.33). There wasno difference between the two groups in the directsupport grouping. There were no significant differ-ences in the initial and present grief levels or inMCS and PCS scores for the two groups.Table 5 presents the actual and preferred place of

death for the patient (according to their family care-giver), and the caregiver preferred place of death fortheir care recipients. The actual place of death didnot significantly differ between the two groups, thoughmore of the intervention group died at home (55.9%)compared to 48.3% in the control group. Congruence

Fig. 1. Flowchart of participants between the pre-bereave-ment and post-bereavement phases.


Table 2Comparison of Characteristics of Family Caregivers Who Participated in the CSNAT Pre-bereavement and Post-bereavement Phases

Caregiver Profile

Pre-bereavement T2 Post-bereavement T3 Total Pre-bereavement Total Post-bereavementP-valuea

T2 Versus T3Intervention n (%) Control n (%) P-valuea Intervention n (%) Control n (%) P-valuea T2 T3

Total N ¼ 233 N ¼ 89 N ¼ 152 N ¼ 60 N ¼ 322 N ¼ 212Age

Mean (SD) 62.1 (0.8) 65.5 (1.4) 0.030b 63.7 (11.8) 67.1 (11.7) 0.063b 63 (12.7) 64.6 (11.8) 0.144b

GenderMale 69 (29.6) 18 (20.2) 0.090 42 (27.6) 10 (16.7) 0.095 87 (27) 52 (24.5) 0.521Female 164 (70.4) 71 (79.8) 110 (72.4) 50 (83.3) 235 (73) 160 (75.5)

Marital statusNever married 13 (5.6) 2 (2.2) 0.217c 8 (5.3) 1 (1.7) 0.190c 15 (4.7) 9 (4.2) 0.881Widowed 7 (3.0) 2 (2.2) 6 (3.9) 2 (3.3) 9 (2.8) 8 (3.8)Divorced/Separated 11 (4.7) 9 (10.1) 5 (3.3) 6 (10.0) 20 (6.2) 11 (5.2)Married/Defacto 202 (86.7) 76 (85.4) 133 (87.5) 51 (85.0) 278 (86.3) 184 (86.8)

EducationNo formal education 1 (0.4) 0 (0) 0.689c 1 (0.7) 0 (0) 0.322c 1 (0.3) 0 (0) 0.654c

Primary 5 (2.1) 1 (1.1) 5 (3.3) 1 (1.7) 6 (1.9) 7 (3.3)Secondary 133 (57.1) 57 (64.0) 85 (55.9) 41 (68.3) 190 (59) 126 (59.4)Tertiary/Trade 94 (40.3) 31 (34.8) 61 (40.1) 18 (30) 125 (38.8) 79 (37.3)

CultureAustralian 12 (55.4) 60 (67.4) 0.103 91 (59.9) 40 (66.7) 0.231c 189 (58.7) 131 (61.8) 0.775Other English speaking 66 (28.3) 21 (23.6) 37 (24.3) 16 (26.7) 87 (27) 53 (25)NoneEnglish speaking 38 (16.3) 8 (9.0) 24 (15.8) 4 (6.7) 46 (14.3) 28 (13.2)

Relationship to care recipientSpouse 15 (67.4) 63 (70.8) 0.644c 102 (67.8) 43 (70) 0.545c 220 (68.3) 145 (68.4) 0.979c

Parent 4 (1.7) 3 (3.4) 2 (1.3) 2 (3.3) 7 (2.2) 4 (1.9)Child 52 (22.3) 16 (18.0) 37 (24.3) 11 (18.3) 68 (21.1) 48 (22.6)Sibling 5 (2.2) 3 (3.4) 2 (1.3) 2 (3.3) 8 (2.5) 4 (1.9)Other 15 (6.4) 4 (4.5) 8 (5.3) 3 (5) 19 (5.9) 11 (5.2)

DiagnosisCancer 17 (75.1) 66 (74.2) 0.026 109 (71.7) 43 (71.7) 0.028c 241 (74.8) 152 (71.7) 0.713Cancer and noncancer 39 (16.7) 8 (9.0) 29 (19.1) 5 (8.3) 47 (14.6) 34 (16)Non-cancer 19 (8.2) 15 (16.8) 14 (9.2) 12 (20) 34 (10.6) 26 (12.3)

Length of palliative care in monthsMean (SD) 2.9 (0.3) 6.0 (0.88) <0.001b 3 (4.5) 6.3 (9.7) 0.001b 3.8 (�5.8) 3.9 (�6.6) 0.854b

Values in bold indicate significant results.aChi-squared unless otherwise specified.bt-test of means.cFisher’s exact test.

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Aounetal.

betweenpatients’ preferred and actual place of death asreported by their caregiver was 79.6% for the interven-tion group compared to 63.3% for the control group,meaning that significantly more in the interventiongroup could achieve their preferred place of death(P ¼ 0.034). There was no significant difference insuch congruence for family caregivers. The preferredplace of death was agreed uponmore often between pa-tient and caregiver in the intervention group comparedto the control group (93.8% vs. 83.0%, respectively,P¼0.020).A small number of respondents didnot com-plete the questions on preferences, either because theywere distressed or because the caregivers did not knowtheir care recipients’ preferences. There was a signifi-cant difference in the bereavement period (time sincedeath) between the two groups (a mean difference of2.8 weeks) with controls having had a longer time sincedeath.

DiscussionA considerable proportion of family caregivers who

completed the intervention before bereavement re-sponded to the post-bereavement survey (66%) withthe attrition rate being mainly due to patients not hav-ing died before the end of the project (10%) and alsodue to caregivers being uncontactable (some withdisconnected phone lines) having moved on or moved

away after the death (21%). However, very few care-givers declined to participate (3%). This goodresponse rate is consistent with the one obtained forthe feedback interview at the pre-bereavement phaseof the study.22 On the whole, the total sample andthe intervention and control groups at post-bereave-ment were representative of the pre-bereavement totalsample and its two groups. It is worth noting that theinterview style used pre-bereavement and post-bereavement in this study may have contributed tothe good response rate by facilitating the creation ofrelationships between participants and the researchnurse that fostered respect, trust, and concern, suchadvantages being reported in the literature.28,29

The majority of the intervention effect estimates onoutcomes (7 of 10) were in a favorable directionalthough not always reaching statistical significance(Table 4). There was a significant difference in percep-tion of support needs being better met for the inter-vention group (CSNAT total) and more particularlyfor domains in the enabling care grouping(P < 0.001, d ¼ 0.43) which means the support thatenables the family caregiver to care for the patient athome, rather than the more direct personal supportfor the caregiver. Within the enabling care grouping,three items were particularly better achieved for theintervention group ‘‘understanding your relative’sillness’’ (P ¼ 0.026), ‘‘knowing who to contact if

Fig. 2. Comparison of unmet support needs for the intervention and control groups at the post-bereavement phase (morehelp needed classified as a response of ‘‘a little more,’’ ‘‘quite a bit more,’’ or ‘‘very much more’’).


concerned’’ (P ¼ 0.028), and to a lesser extent ‘‘man-aging your relative’s symptoms’’ (P ¼ 0.052). Reducingsuch uncertainty by targeting the specific support andinformation needs of caregivers through open and

frequent communication with their health care pro-vider (as afforded by the CSNAT Approach) is re-ported to allow family caregivers to more fullyprepare for the death.7,8 The finding that more of

Table 4Estimate of Effect of Intervention in the Post-bereavement Phase (Control ¼ 0, Intervention ¼ 1)

Variable

Unadjusted Analysis Adjusted Analysis

FavorableResult

Intervention EffectUnadjusted

Difference (95% CIs) P-value

InterventionEffect Adjusted

Differencea (95% CIs) P-value

Estimate of effect of intervention from linear mixed-effects models, accounting for cluster effect of base. Intervention effect indicatesdifferences in scores between the control and intervention groups (control ¼ 0, intervention ¼ 1)

CSNAT enabling support domainsb L2.2 (L3.3, L1.2) <0.001 L2.2 (L2.9, L1.4) <0.001 <0CSNAT direct support domainsb �0.9 (�2.3, 0.5) 0.228 �0.8 (�0.1, 0.04) 0.372 <0All CSNAT domains (total)b L2.8 (L3.4, 2.3) <0.001 L2.9 (L3.7, L2.1) <0.001 <0TRIG initial 2.0 (�0.3, 4.3) 0.085 1.2 (�1.2, 3.7) 0.325 <0TRIG present 0.8 (�2.4, 4.1) 0.615 �0.6 (�4.1, 2.8) 0.713 <0SF12 MCS �2.4 (�5.1, 0.8) 0.146 �1.7 (�5.1, 1.7) 0.319 >0SF12 PCS 1.9 (�1.1, 5.0) 0.212 1.3 (�2.0, 4.5) 0.451 >0

Perceived adequacy of support. Estimate of effect of intervention (proportional OR) on ordinal response outcomesNurses asked about your support needs 1.2 (0.8, 1.6) 0.689 1.0 (0.4, 2.4) 0.970 >1Nurses listened to any concerns you had 1.3 (0.9, 1.8) 0.174 1.1 (0.6, 1.9) 0.829 >1Unable to discuss any concerns with nurses 0.4 (0.2, 0.6) <0.001 0.3 (0.1, 0.5) <0.001 >1

Values in bold indicate significant results.CSNAT ¼ Carer Support Needs Assessment Tool; TRIG ¼ Texas Revised Inventory of Grief; SF 12 ¼ Short Form Health Survey; MCS ¼Mental Component Score;PCS ¼ Physical Component Score.Intracluster correlation (ICC) for the bases (clusters) was essentially zero meaning that there was no correlation of outcome within each base. Cohen’s d ¼ 0.33(0.02, 0.64) for CSNAT total, and Cohen’s d ¼ 0.43 (0.12, 0.74) for CSNAT enabling support.aMixed-effects models provided estimates of the mean adjusted difference. Adjusted for cluster effect, age of caregiver, gender of caregiver, time since death,diagnosis of patient, relationship to cared person (spouse, child, other), and length of palliative care.bTobit regression used for CSNAT due to floor effects.

Table 3Summary Data for Post-bereavement Outcomes (T3)

Variables

Intervention Control

Total N Mean (SD) Total N Mean (SD)

CSNAT enabling domains 147 7.6 (1.3) 56 8.5 (3.2)CSNAT direct support domains 147 7.9 (1.8) 56 8.4 (3.3)All CSNAT domains (total) 147 15.6 (2.7) 56 16.9 (6.4)TRIG initial 147 20.6 (7.9) 58 18.6 (6.4)TRIG present 148 42.8 (10.5) 56 42.1 (11.5)SF12 MCS 151 47.0 (10.5) 60 49.3 (10.9)SF12 PCS 151 50.6 (10.2) 60 48.7 (10.3)

Perceived Adequacy of Support Total N n (%) Total N n (%)

Nurses asked about your support needs 149 56Never 2 (1.3) 1 (1.8)Sometimes 19 (12.8) 8 (14.3)Usually 30 (20.1) 11 (19.6)Always 97 (65.1) 34 (60.7)Do not know 1 (0.7) 2 (3.6)

Nurses listened to any concerns you had 149 54Never 0 (0) 1 (1.8)Sometimes 10 (6.7) 4 (7.4)Usually 20 (13.4) 8 (14.8)Always 119 (79.9) 41 (75.9)Do not know 0 (0) 0 (0)

Unable to discuss any concerns with nurses 149 56Always 3 (2.0) 2 (3.6)Usually 1 (0.7) 0 (0)Sometimes 16 (10.7) 1 (1.8)Never 126 (84.6) 53 (94.6)Do not know 3 (2.0) 0 (0)

CSNAT ¼ Carer Support Needs Assessment Tool; TRIG ¼ Texas Revised Inventory of Grief; SF 12 ¼ Short Form Health Survey; MCS ¼Mental Component Score;PCS ¼ Physical Component Score.


the intervention group felt that ‘‘sometimes’’ theycould not discuss their concerns with the nurses, albeitbecause they felt they did not want to discuss them inthe presence of their care recipients, is a reflection ofthe more comprehensive nature of the CSNATcompared to standard practice. The CSNAT identifiedthe legitimate caregiver concerns and encouraged thediscussion, but not all caregivers wished to conductthe discussion in front of the patient. This raises atraining issue for practitioners where it may be neces-sary to give caregivers the option of completing theCSNATon their own and then make a separate contactto have the CSNAT conversation with them.

The fact that the intervention group reported thatmore of their needs have been met is consistent withthem experiencing less strain than the control groupduring the pre-bereavement period.21 The fact thatthis support was significant in the enabling caregrouping of the CSNAT is also in line with the nurses’feedback during the caregiving period.23 where ahigher percentage of nurses (77%) indicated that‘‘enabling care’’ was within the service’s capacity,whereas a lesser proportion of nurses (56%) felt theycould action ‘‘direct’’ personal support for the care-givers themselves. The authors explained that this dif-ference in nurses’ responses may be due to theexisting and necessary focus of service providers’

resources on patient care delivery and support thatthe service routinely provides.23 Although it is animportant finding that caregivers felt supported deliv-ering care to their relative, nevertheless, it is an indica-tion that the service focus has not shifted enoughtoward the direct support needs of the caregivers. Itmay also be the case that the nurses saw the enablingdomains as delivering their usual patient-focused care(equipment, medications ..), but they did not distin-guish between the needs of the caregivers within thesedomains and those of the patients.In both groups, nearly one-half or more died at

home, and in particular, this was 55.9% for the inter-vention group, which is consistent with the palliativecare service proportion of home deaths, reported as56.8% for people who have family caregivers.30 Morepatients in the intervention group, compared to thecontrol group, achieved their preference for place ofdeath according to their family caregivers (79.6% vs.63.3%, P ¼ 0.034). This congruence rate is at the up-per end of those reported in the literature 30%e90%.31 However, home may not be the ideal or thepreferred location for dying for many patients.14,32

Aoun and Skett emphasized that ‘‘the ability to diein the place of choice needs to be looked at as apossible indicator of meeting patient needs or as aquality measure in end-of-life care’’.32, p.534

Table 5Comparison in Actual and Preferred Place of Death Between the Two Groups

Variables

InterventionN ¼ 152 Control N ¼ 60

Two-GroupComparison, P-valuean % n %

Bereavement period (time since death in weeks)Mean (SD) 23.5 (8.2) 26.3 (8.2) 0.032b

Actual place of deathHome 85 55.9 29 48.3 0.318Hospital 15 9.9 8 13.3 0.322c

Hospice 43 28.3 22 36.7Nursing home 8 5.2 1 1.7Other 1 0.7 0 0

Actual place of death (recorded)Home 85 55.9 29 48.3 0.318Elsewhere 67 44.1 31 51.7

Achievement of preference for place of death (patient preference isreported by caregiver)

Patient preference versus actualAchieved 121 79.6 38 63.3 0.034Not achieved 24 15.8 15 25.0Too distressed/not discussed 7 4.6 7 11.7

Caregiver preference versus actualAchieved 125 82.2 46 76.7 0.110Not achieved 24 15.8 9 15.0Too distressed/not discussed 3 2.0 5 8.3

Patient preference versus caregiver preferenceAgreed 136 93.8 44 83.0 0.020Disagreed 9 6.2 9 17.0

Values in bold indicate significant results.Congruence analysis based on data for preferred location for 198 patients and 204 caregivers.aChi-squared unless otherwise specified.bt-test of means.cFisher’s exact test using the four groupings of home/hospital/hospice/all others.


One proposed explanation put forward for the highagreement rates between patients’ and caregivers’ pref-erence about the place of death is that they could bedue to the opportunity of the conversation that CSNAThas systematically provided. Nurses have mentioned un-dertaking discussions with caregivers which consisted of‘‘what to expect as [client’s] condition deteriorates anddeath nears,’’ and ‘‘long talk about end-of-life care/dying at home’’.21, p.11 This may have prepared care-givers for the imminent death, a concept being empha-sized in the literature as protective against adverseoutcomes in the post-bereavement period.7,8,10 Theimportance of early conversations about preferencesfor place of death involving patients and their familiesto achieve the preferred place has been highlighted inthe literature.12

There was also a significant greater agreement inthe intervention group between the caregivers andtheir care recipients on the preferred place of death(93.8% vs. 83%, P ¼ 0.02) in this study. Grande andEwing33 reported that death in the preferred locationwas more likely if the patient and caregiver agreed.Therefore, a higher likelihood of dying in place ofpreference in the intervention arm may be a resultof higher level of agreement, rather than perhapsthe intervention itself.

The post-bereavement outcomes differed between thisstudy and the UK post-bereavement study.25 The UKstudy reported a small reduction in early grief, improve-ments in mental and physical health, and increase inprobability of death at home, but no indication thatthe intervention group was more likely to feel theirneeds had been met. The UK trial also had a consider-ably larger sample size (n ¼ 681) and therefore higherstatistical power than in our study. However, the authorsstated that the low implementation rate of the CSNAT bythe services during the caregiving phase and subse-quently the low response rate by bereaved caregivers tothe postal surveys have reduced the potential of theintervention to make an impact.25 Also the use ofintention-to-treat analysis, where not all participantsreceived the intervention, may have diluted the interven-tion effect.

Although not significant, the differences in theSF12 scores of MCS and PCS in our study were consis-tent with the pre-bereavement profiles, where the con-trol group had better mental scores and theintervention group had better physical scores.21

Compared to the UK study, this group had similarPCS scores but better MCS scores,25 perhaps meaningthat their mental health was less compromised. In thisstudy, the intervention had no impact on grief, butthis study group had lower initial and present grieflevels than the UK group, possibly due to their bettermental health impacting positively on their grief. Gar-rido et al.34 have shown that, among other outcomes,

better quality of death and better caregiver mentalhealth before the patient’s death were predictors ofimproved caregiver bereavement adjustment.The fact that Nielsen et al.6 found that the levels of

grief and depressive symptoms were higher duringcaregiving than six months after the loss, and thefact that our study found that caregivers experiencedless strain before death due to the intervention.21

and that at postdeath they felt their needs have beenmet and achieved the patient preferred place of death,reinforces the need for palliative care services to takeaction during the pre-bereavement period to effec-tively support family caregivers. Yet, the ‘‘window ofopportunity’’ for contact with caregivers to assess theirgrief and bereavement needs while heading to thecare recipient’s impending death is still not wellused in the palliative care system.35 Seizing this oppor-tunity before bereavement is even more crucial thatthe latest findings from the Australian bereavementsupport survey showed that just half of the bereavedhad a follow-up contact from the palliative care ser-vices at three to six weeks, and only a quarter had afollow-up at 6 months and that the blanket approachto bereavement support adopted by the services wasdeemed unhelpful.36 Although in general there is alack of evidence which could guide pre-death riskidentification and interventions that could benefitinformal caregivers before and after the death of theircare recipient,35 the results from this study provide theevidence that the CSNAT intervention has a positiveimpact on family caregivers after bereavement.

LimitationsThe main analysis in this study was based on per-

protocol analysis, in line with the pre-bereavementtrial. Per-protocol analyses may have boosted the likeli-hood that the intervention had an effect as it onlyincluded those who actually received the intervention.However, statistical comparisons were undertaken forparticipants who withdrew from the intervention andthe control groups, and there were no significant dif-ferences with those who completed the study. Table 2demonstrates that the characteristics of family care-givers were similar in the two phases and there wereno characteristics that appeared to influencewithdrawal.Restricting the time since death to four to

six months for the post-bereavement interviews re-duces the likelihood of recall bias and has producedadequate response rates as reported in the litera-ture.25,37 May be a longer term follow-up of six monthsor more could have captured those who developedcomplicated grief and thus produced more group dif-ferences. However, it is likely that the sample sizewould have been much smaller with lower statisticalpower to show such group differences.


Another limitation is that all the preferences forplace of death have come from caregiver interviewscollected after bereavement. Certainly, a prospectivemeasure would have been better to elicit preferencesthat are provided directly by the patient rather thanby proxy from the caregiver. However, the end resultis about the caregiver feeling good about the patientachieving what they have thought would be theirpreference.

As reported in the pre-bereavement phase of thestudy,21 the issue of unbalanced groups ultimatelyis an inherent limitation of the stepped-wedgedesign; however, the generalized linear mixedmodeling used to examine the efficacy of the CSNATintervention is generally robust to unbalancedgroups. Relatedly, the intervention and controlgroups in both the pre-bereavement and post-bereavement phases were found significantly differenton a number of baseline characteristics. Althoughanalyses were adjusted for these differences, otherpotential underlying biases cannot be completelyruled out.

ConclusionsThe positive supportive outcomes from the

CSNAT trials demonstrated the benefits gained byboth family caregivers and health care providers inengaging caregivers in early and direct assessmentof their support needs before bereavement. There-fore, there is a need for palliative care services toconsider the continuum of the pre-bereavementand post-bereavement phases, the predictors ofbereavement outcome among caregivers duringcaregiving, and to develop strategies that assist care-givers in feeling more prepared for the death andtheir bereavement. However, all this will not beachieved until services are funded to enable themto fully adhere to their remit or ethos of being therefor the family caregivers as well as the patients andthus be able to incorporate systematic assessmentand support of family caregivers.

Disclosures and AcknowledgmentsThis research was financially supported by an

Australian Research Council linkage grant and SilverChain (grant no. LP110100622).The authors thankJo Enticott for statistical advice, Kathy Deas for assis-tance with data collection, and Denise Howting forassistance with the analysis. The authors gratefullyacknowledge the contribution of Silver Chain in facil-itating the project and in recruitment and the contri-bution of family caregivers to enriching the projectwith their feedback considering their difficultcircumstances.

Ethical approval: The study was approved by theUniversity Human Research Ethics Committee (HR24/2011) and the Service Human Research EthicsCommittee (EC App 068). All caregiver participantsprovided written informed consent to participate inthis study, and the two ethics committees approvedthis consent procedure.

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16. Ewing G, Austin L, Diffin J, Grande G. Developing a per-son-centred approach to carer assessment and support. Br JCommunity Nurs 2015;20:580e584.

17. Ewing G, Grande G. National association for hospice atH. Development of a carer support needs assessment tool(CSNAT) for end-of-life care practice at home: a qualitativestudy. Palliat Med 2013;27:244e256.

18. Ewing G, Brundle C, Payne S, Grande G. National Asso-ciation for Hospice at H. The Carer Support Needs Assess-ment Tool (CSNAT) for use in palliative and end-of-lifecare at home: a validation study. J Pain Symptom Manage2013;46:395e405.

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Clinical Note

Effects of Bereavement Life Reviewon Spiritual Well-Being and DepressionMichiyo Ando, RN, PhD, Tatsuya Morita, MD, Mitsunori Miyashita, RN, PhD,Makiko Sanjo, RN, PhD, Haruko Kira, BA, and Yasuo Shima, MDFaculty of Nursing (M.A.), St. Mary’s College, Fukuoka; Department of Palliative and Supportive Care,

Palliative Care Team and Seirei Hospice (T.M.), Seirei Mikatahara, Hospital, Shizuoka; Department of

Palliative Nursing (M.M.), Health Sciences, Tohoku University Graduate School of Medicine, Sendai;

Faculty of Medicine (M.S.), Adult Health Nursing, School of Nursing, Toho University, Tokyo; Faculty of

Psychology (H.K.), Kurume University, Fukuoka; and Department of Palliative Medicine (Y.S.),

Tsukuba Medical Center Hospital, Ibaraki, Japan

AbstractContext. Some bereaved families experience low spiritual well-being, such as

lack of meaning of life or purpose and psychological distress like severedepression.

Objectives. The primary aim of this study was to investigate the effects of theBereavement Life Review on the spiritual well-being of bereaved familymembers. The secondary aim was to investigate the effects of this therapy ondepression.

Methods. Participants were 21 bereaved family members who lost loved onesin various palliative care units in Japan. They received the Bereavement LifeReview, which consisted of two sessions for about 60 minutes each. In the firstsession, a bereaved family member reviewed memories with a clinicalpsychologist and answered some question. After the first session, the clinicalpsychologist made an album. In the second session, the family member and theclinical psychologist confirmed the accuracy of the contents of the album. Theduration of the therapy was two weeks. The family member was assessed usingthe Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being(FACIT-Sp) scale and the Beck Depression Inventory�-II (BDI-II) pre- andpostintervention.

Results. FACIT-Sp scores increased from 19.9� 5.8 to 22.8� 5.1 (Z¼�2.2,P¼ 0.028 by Wilcoxon signed-rank test) and BDI scores decreased from 10.8� 7.7to 6.8� 5.8 (Z¼�3.0, P¼ 0.003).

Conclusions. The Bereavement Life Review has the potential to improvespiritual well-being and decrease depression of bereaved family members. Afurther study with more participants is required to confirm the present

This study was supported by the Japan Hospice Pal-liative Care Foundation.

Address correspondence to: Michiyo Ando, RN,PhD, St. Mary’s College, Tsubukuhonmachi 422,

Kurume City, Fukuoka, Japan. E-mail: [email protected]

Accepted for publication: January 19, 2010.

� 2010 U.S. Cancer Pain Relief CommitteePublished by Elsevier Inc. All rights reserved.

0885-3924/$ - see front matterdoi:10.1016/j.jpainsymman.2009.12.028

Vol. 40 No. 3 September 2010 Journal of Pain and Symptom Management 453



findings. J Pain Symptom Manage 2010;40:453e459. � 2010 U.S. Cancer PainRelief Committee. Published by Elsevier Inc. All rights reserved.

Key WordsCancer patients, bereavement, psychotherapy, life review, spiritual well-being

IntroductionBereaved family members may experience

physical or psychological problems as a griefreaction.1,2 Two types of grief reactions havebeen identified: a normal reaction and an un-resolved (complicated) reaction that requirestherapy to address emotional, behavioral, andspiritual dysfunction.3 A complicated grief re-action may include disbelief about death,lack of acceptance of death, prolonged search-ing and yearning,4 and hopelessness.5 Theremay be a link between suicide and hopeless-ness.6,7 Depressive symptoms,8 minor depres-sion,9 and major depression10 have beenobserved as part of a complicated grief reac-tion. Depression is one of the most serioussources of psychological distress for bereavedfamily members.11 Major depressive episodesoccur in about 50% of widows and widowersat one month after death, 25% at two months,16% at one year, and 6% at two years.

Hospices provide many kinds of support forbereaved family members, including telephonecontact, counseling, therapeutic groups, spiri-tual support by chaplains, and anniversarycards. Reid et al.12 found three types of support(counseling, befriending, and support frompaid bereavement staff) were provided in fiveEnglish hospices. All hospices made contactwith bereaved relatives shortly after the patient’sdeath, all provided information about practicaland emotional aspects of bereavement, and allgave a mixture of social and therapeutic sup-port.13 Neimeyer and Wogrin14 suggested theutility of a meaning-oriented approach for grieffrom the view of constructivism, and Boelen15

suggested the utility of cognitive behavior ther-apy for complicated grief.

In Japan, the general psychiatric health of be-reaved families is significantly lower than that ofnongrieving people16 and support for thesefamilies is needed.17 Bereavement follow-upis performed in 37 (74%) institutes, and memo-rial cards and services are frequently provided,

including many by health care professionals.18

About 20% of all palliative care units (PCUs)in Japan provide support groups.19 AlthoughPCU staffs recognize the need forindividualized care,18 individually oriented in-terventions, such as telephone contacts or per-sonal counseling, are used less often becauseof a lack of professional caregivers or sociocul-tural factors.

There are very few studies on the effect of in-terventions on the spiritual well-being of be-reaved family members. However, spiritualityis an important factor in the quality of life ofhumans. Spirituality may be defined in termsof a meaning for living and peace of mind20

or a relationship with a transcendent being.21

The Life Review is a form of psychotherapy.Ando et al.22,23 have shown the efficacy of lifereview on spiritual well-being, anxiety, and de-pression of terminally ill cancer patients;through this therapy, patients found a meaningfor their own lives, and their spiritual well-being increased and anxiety or depressiondecreased.

Some studies show that narrating, life re-view, and reminiscence are effective in grief is-sues, personal issues, and promoting the griefprocess;24,25 these studies used qualitative ap-proaches and did not evaluate efficacy for spir-itual well-being. Nonetheless, these previousstudies suggest that life review may be usefulfor promoting spiritual well-being of the be-reaved family member.

We developed a life review interview for be-reaved family members, which we refer to asBereavement Life Review. Bereavement Life Re-view for bereaved families in the present study issimilar to previous life review,23 such that clientsrecall memories about the past in two sessions.The purpose was to promote spiritual well-being and decrease psychological distress. Be-reavement Life Review is different from previ-ous studies in that the clients are bereavedfamilies, not elders or terminally ill cancer pa-tients, and question items are focused on

454 Vol. 40 No. 3 September 2010Ando et al.

bereaved families. In the present study, we inves-tigated the efficacy of Bereavement Life Reviewas individual psychotherapy. The primary aimwas to investigate the effects of BereavementLife Review on the spiritual well-being of be-reaved family members as a form of improvedpsychological care. The secondary aim was to in-vestigate the effects of the review on anxiety anddepression among the family members.

MethodsParticipants

Primary physicians identified potential par-ticipants in the study based on the followinginclusion criteria: 1) cancer patients of the be-reaved families died in the PCU, 2) familymembers were aged 20 years or more, and 3)family members were capable of replying toquestionnaires. The exclusion criteria were 1)participants would have suffered serious psy-chological distress as determined by the pri-mary physician and 2) participants were notaware of the diagnosis of malignancy.

The study was performed as part of a largecross-sectional anonymous nationwide surveyof bereaved families of cancer patients whohad been admitted to 100 PCUs in Japan.The PCU is the most common type of special-ized palliative care service in Japan. Therefore,we chose bereaved family members of patientsin PCUs as the subjects of the study. All theseunits provide palliative care through a multidis-ciplinary team, including attending physicians,nurses, psychiatrists, clinical psychologists, andmedical social workers. Some PCUs provideregular religious care by pastoral care workersor priests. The details of the service contentshave been given elsewhere.26 Questionnairesabout the palliative care service were mailedto bereaved families in June 2007 and againin August 2007 to nonresponding families.The details of the method of the previousstudy are available elsewhere.27,28

In the questionnaire, families indicated ifthey were willing to participate in another re-search interview. One of the coauthors (T.M.)made a list of registered participants who werewilling to undergo an interview and mailed itto the interviewer. The interviewer selected 64registered participants for interview based ona consideration of traveling distance. An

explanation of the Bereavement Life Reviewwas mailed to these participants. Subsequently,28 family members replied with consent to con-tact them for an interview. The interviewer firstcontacted the family member by phone, andseven families were eliminated from the studybecause of difficulties with movement (n¼ 1),illness (n¼ 1), very long traveling distance(n¼ 1), withdrawal of consent (n¼ 2), and un-able to contact (n¼ 2). Thus, 21 family mem-bers participated in the study (six males; meanage 65� 15.1 years and 15 females; mean age60� 11.7 years). The background of the partic-ipants is shown in Table 1.

Intervention: Bereavement Life ReviewTwo interview sessions were used in the

Bereavement Life Review. In the first session,the subject reviewed his/her life with a clinicalpsychologist. Each interview session lastedabout 30e60 minutes, and the interval be-tween the first and second sessions was oneweek. The following questions were asked inthe first session: 1) What is the most importantthing in your life and why? 2) What are yourmost impressive memories of the patient? 3)In taking care of the patient, what is yourmost pleasant memory with the patient? 4)What growth did you experience through tak-ing care of the patient? 5) What is the most im-portant role you have played in your life? and6) What are you proudest of in your life?

Table 1Bereaved Family Members’ Backgrounds

Characteristic Patients % Data Number

Mean age (years) 58.4 (13.3)Sex

Male 29 6Female 71 15

Relationship to thepatient

Spouse 38 8Parent 52 11Mother-in-law 5 1Child 5 1

ReligionYes 24 5No 76 16

Religious backgroundBuddhism 5 1Christianity 5 1Jodo Shu, Honen

Buddhism5 1

Soka Gakkai 9 2

Vol. 40 No. 3 September 2010 455Bereavement Life Review Therapy

The narratives of the subjects were re-corded. After the first session, the interviewwas transcribed verbatim, and the therapistmade a simple album. In the album, key wordsfrom the answer to each question were se-lected, and the therapist pasted photos ordrawings from books or magazines that wererelated to the subject’s words or phrases, tomake the album beautiful and memory pro-voking. In the second session, the patientand therapist viewed the album together andagreed on the contents.

ProcedureThe ethical and scientific validity of the

study was approved by the institutional reviewboard of St. Mary’s College. The interviewertelephoned each family member who showedwillingness to participate in the interview bymail, and the interview day and place were de-termined. Interviews were conducted by a clin-ical psychologist and a pastoral care worker ina college office, at the homes of family mem-bers or in coffee shops. The different interviewplaces might influence the results; however, wemaintained some criteria: places were quiet,and families’ privacy was protected.

Outcome MeasurementsThe Japanese version of the Functional As-

sessment of Chronic Illness Therapy-SpiritualWell-Being (FACIT-Sp) scale,29 which wastranslated from the original version,21 wasused to measure spirituality. Items are scoredon five-point scales, ranging from 4 (stronglyagree) to 0 (strongly disagree). The BeckDepression Inventory�-II (BDI-II)30 was usedto measure the depression of family members.The BDI-II includes 21 items scored on afour-point scale, ranging from 3 (stronglyagree) to 0 (strongly disagree). The validityand reliability of the FACIT-Sp and BDI arewell established.

Data AnalysisWe calculated the score of FACIT-Sp and

BDI of a bereaved family member individuallyand used each score for statistical tests usingSPSS version18 (SPSS Inc., Chicago, IL). Statis-tical comparisons of the FACIT-Sp and BDIscores pre- and postintervention were per-formed by Wilcoxon signed-rank test. Changesin these scores for subgroups (demographic

factors), which were sex (male or female),age (>60 or <60 years), religion (yes or no),relationship (spouse or nonspouse), durationof illness (more than one or less than oneyear), and time after death (more than twoor less than two years), were examined usingthe Mann-Whitney test.

ResultsAfter the Bereavement Life Review, FACIT-

Sp scores increased from 19.9� 5.8 to22� 5.1 (Z¼�2.2, P¼ 0.028, n¼ 21) andBDI scores decreased from 10.8� 7.7 to6.8� 5.8 (Z¼�3.0, P¼ 0.003, n¼ 21). Theseresults are summarized in Table 2. Thechanges in scores from pre- to postinterven-tion showed a tendency to differ for theFACIT-Sp for the ‘‘time after death’’ subgroups(Table 3) and on the BDI for the ‘‘religion’’and ‘‘relationship’’ subgroups (Table 4). Thatis, the changes for the FACIT-Sp of the familymembers for less than two years were muchmore than those for more than two years afterthe patient’s death. The changes on the BDIfor family members who did not have a religionor the patient was not a spouse, such as a childor parents, were much more than those whohad a religion or the patient was a spouse.

DiscussionThe significant increase in FACIT-Sp scores

suggests the efficacy of the Bereavement LifeReview for improving the spiritual well-beingof bereaved family members. The results areconsistent with those in our previous studiesof terminally ill cancer patients.22,23 We couldnot identify a cutoff point for the FACIT-Spscore, but subjects with preintervention scoresof less than the mean (19.9) had markedly in-creased scores after the intervention. Thus,this suggests that this intervention has a goodeffect on subjects with low spiritual well-being.

Table 2Scores of FACIT-Sp and BDI Pre- and

Post-Bereaved Life Review (n¼ 21)

Scale Pre Post Z P

FACIT-Sp 19.9� 5.8 22.8� 5.1 �2.2 0.028BDI 10.8� 7.7 6.8� 5.8 �3 0.003


Statistical significance of FACIT-Sp scoresmight show improvement of spiritual well-being of the bereaved families. One of thereasons for the efficacy of BereavementLife Review on spiritual well-being may be pro-motion of the grief process. Warden31 de-scribed four elements of this process: 1)acceptance of the reality of the loss, 2) experi-ence of the pain of grief, 3) adjustment to anenvironment from which the deceased is miss-ing, and 4) reinvestment of energy in otherpossibilities. Martocchio32 proposed an alter-native explanation of the grief process as learn-ing to live with memories of hurt, happiness,suffering, and joy associated with the deceased,without experiencing discomfort. Based onthese proposals and the present results, weexplain the efficacy of the Bereavement LifeReview as follows: 1) creation of an environ-ment in which the subject begins to ventpainful emotions, 2) remembering good andbad memories with evaluation,33 3) findingmeaning in the existence of the family, pro-moted by questions in the life review, and4) living for the future with a new role and

pride. Through these processes, the spiritualwell-being of the family member may increase.

The significant reduction of BDI scores sug-gests the efficacy of the Bereavement Life Re-view for depression. In the BDI, a score of 17points or higher shows clinical problems. Be-cause the mean scores of the subjects were10.8 (pre) and 6.8 (post), their mean level ofdepression had not reached a clinical level.However, four subjects had preinterventionscores greater than 17, and these subjectsshowed markedly decreased scores after the re-view. The statistical significance shows the de-cline in the depression of bereaved familiesclinically, and the Bereavement Life Reviewmay be effective particularly for subjects withsevere depression.

The Buddhist service Houji or Houyoh hasbeen offered in Japan for many centuries. Inthese services, the memory of the deceased isshared among the bereaved while they talkwith relatives. The bereaved are often consoledand encouraged through these services.18 Sim-ilar to the Buddhist service, remembering orreviewing memories in the Bereavement LifeReview may console family members and

Table 3Test of Differences of Changed Scores of

FACIT-Sp by Family Members’ Background

Characteristic

Changes ofFACIT-Sp(Pre- and

Postintervention) Z P

Sex �1.25 0.21Male (n¼ 6) 5.3� 4.1Female (n¼ 15) 1.9� 6.5

Family members’ age �0.39 0.7More than 60 years

(n¼ 9)3.3� 6.3

Less than 60 years(n¼ 12)

2.2� 6.0

Religion 0 1Yes (n¼ 5) 2.8� 5.5No (n¼ 16) 2.9� 6.4

Relationships 0.62 0.54Spouse (n¼ 8) 3.5� 5.0Nonspouse (n¼ 13) 2.4� 6.8

Duration of illness �0.89 0.37More than one year

(n¼ 9)2.0� 4.1

Less than one year(n¼ 12)

3.5� 7.3

Time after death �1.63 0.1More than two years

(n¼ 13)0.84� 5.9

Less than two years(n¼ 8)

6.1� 5.1

Table 4Test of Differences of Changed Scores ofFACIT-Sp by Family Member’s Background

Characteristic

Changes of BDI(Pre- and

Postintervention) Z P

Sex �1.0 0.31Male (n¼ 6) 3.7� 8.4Female (n¼ 15) 4.1� 4.2

Member’s age �0.82 0.41More than 60 years

(n¼ 9)5.2� 6.7

Less than 60 years(n¼ 12)

2.4� 3.0

Religion �1.45 0.15Yes (n¼ 5) 1.2� 2.7No (n¼ 16) 4.8� 5.9

Relationships �1.6 0.11Spouse (n¼ 8) 1.5� 3.2Nonspouse (n¼ 13) 5.5� 6.1

Duration of illness �1.3 0.22More than one year

(n¼ 9)2.4� 4.7

Less than one year(n¼ 12)

5.2� 5.9

Time after deathMore than two years

(n¼ 13)3.7� 4.4

Less than two years(n¼ 8)

4.5� 7.3 �0.30 0.77


decrease depression. Recently, the Buddhistservice has tended to be simplified, and familymembers may have less chance to rememberor talk about memories of the deceased andmay lose the opportunity to be consoled.Thus, formal psychotherapy may be neededin the current environment. BereavementLife Review has the same kind of effects asgroup therapy in Family Focused Grief Ther-apy (FFGT) in Western culture, as describedby Kissane et al.34 This therapy also decreaseddepression measured by the BDI, which sug-gests that the questions may work well inboth FFGT35 and Bereavement Life Review.

In the demographic subgroup analysis,‘‘time after death’’ showed a significant ten-dency to affect the change in the FACIT-Spscore. This result suggests that BereavementLife Review given earlier after bereavement(six months or one year) may be more effec-tive for improving the spirituality of the be-reaved family. Similarly, the subgroupanalyses of the changes in the BDI score fol-lowing the Bereavement Life Review showthat the therapy may be most effective for fam-ily members who do not have a religion andare not a spouse of the deceased. These resultssuggest that the bereaved family without a reli-gion may need some kind of psychological sup-port. Also, this therapy may be more effectivewhen the deceased are parents or children,and it might demonstrate the strength of fam-ily bonding of the Japanese.

As for clinical implications, the BereavementLife Review may be effective on spiritual well-being and psychological distress as one poten-tial intervention for bereaved families. Also, asfor research implications, life review may beeffective for not only elders or patients butalso bereaved families.

The present study had limitations. The firstis that the study did not include a controlgroup because the total number of the partic-ipants who were registered was small. Futurestudies need a control group that receives anintervention by a trained therapist for anequivalent amount of time, not doing the spec-ified intervention. It also may be important tocompare the intervention with Houji orHouyoh in which the bereaved may remembersome memories in a different form.

The second limitation is that the grief ofmost bereaved families decreases over time,

and the number of families was not adequateto fully evaluate this. According to Torgeset al.,36 regret resolution using life review con-tributed to adjustment, as indicated by post-loss depressive symptoms and well-being, andregret resolution early in bereavement mightbe more effective. In the future, we need to in-vestigate the efficacy of the Bereavement LifeReview in terms of time after the patient’sdeath.

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3. Lendrum S, Syme G. A practical approach toloss and bereavement counseling. London, UK:Routledge, 1992.

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8. Bruce ML, Kim K, Leaf PJ, et al. Depressiveepisodes and dysphoria resulting from conjugal be-reavement in a prospective community sample. AmJ Psychiatry 1990;145:608e611.

9. Zisook S. Death, dying and bereavement. In:Kaplan HI, Sadock BJ, eds. Comprehensive text-book of psychiatry, 6th ed. Baltimore: Williamsand Wilkins, 1995:2383e2389.

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14. Neimeyer RA, Wogrin C. Psychotherapy forcomplicated bereavement: a meaning-orientedapproach. Illness Crisis Loss 2008;16:1e20.

15. Boelen P. Cognitive behavior therapy for com-plicated grief. Bereave Care 2008;27:27e30.

16. Shingaki Y, Sunagawa Y, Okudaira T, Hirayasu A.An investigative study into the physical and mentalstatus of bereaved families who have had a loss ofa family member due to cancer. [in Japanese]. JapJ Clin Res Death Dying 2003;26:91e96.

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18. Matsushima T, Akabayashi A, Nishitateno K.The current status of bereavement follow-up in hos-pice and palliative care in Japan. Palliat Med 2002;16:151e158.

19. Sakaguchi Y, Tsuneto S, Takayama K, et al. Tasksperceived as necessary for hospice and palliativecare unit bereavement services in Japan. J PalliatCare 2005;22:320e323.

20. Murata H, Morita T. Conceptualization ofpsycho-existential suffering by the Japanese TaskForce: the first step of nationwide project. PalliatSupport Care 2006;4:279e285.

21. Peterman AH, Fitchett G, Brady MJ, et al. Mea-suring spiritual well-being in people with cancer:the Functional Assessment of Chronic IllnessTherapy-Spiritual Well-Being Scale (FACIT-Sp).Ann Behav Med 2002;24:49e58.

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Original Article

Universality of Bereavement Life Reviewfor Spirituality and Depression inBereaved Families

Michiyo Ando, RN, PhD1, Yukihiro Sakaguchi, PhD2,Yasufumi Shiihara, MD, PhD3, and Kumi Izuhara4

AbstractThe present study aimed to investigate the effects of the Bereavement Life Review on depression and spiritual well-being ofbereaved families in a setting that does not specialize in palliative care. The participants were 20 bereaved family members whounderwent the Bereavement Life Review over 2 sessions in 2 weeks. Beck Depression Inventory Second Edition scores signifi-cantly decreased from 14.4 + 9.2 to 11.6 + 7.4 (t¼ 2.15, P¼ .045) and Functional Assessment Chronic Illness Therapy–Spiritualscores increased from 24.3 + 10.1 to 25.9 + 11 (t ¼ �1.0, P ¼ .341) from pre- to postintervention. These results show that theBereavement Life Review can decrease depression and improve spiritual well-being of bereaved families after the death of a familymember in a setting without specialized palliative care. The results also suggest the universality of this therapy.

KeywordsBereavement Life Review, bereaved family, life review, depression, spiritual well-being, nonpalliative care setting

Introduction

Bereaved family members may experience physical or psycho-

logical problems as a grief reaction.1,2 Hanson and Stroebe

proposed that grief reactions comprise emotional reactions like

depression or anxiety, cognitive reactions like suppression or

helplessness, behavioral reactions like fatigue, and physiologi-

cal or physical reactions like sleep disturbance or eating

disorder.3 Emotional reactions may include minor depressive

symptoms, minor depression, and major depression. About

50% of the widows and widowers experienced a major dep-

ressive episode at 1 month after the death of a spouse,4 25%at 2 months, 16% at 1 year, and 14% to 16% at 2 years.5

Bereavement-related depression also tends to be chronic, to

lead to protracted biopsychosocial dysfunction, and to be associ-

ated with impaired immunological function.5 Depression is a seri-

ous psychological distress for bereaved family members,6 and

these people may also experience long-term anxiety disorders,4

including both panic and generalized anxiety disorder throughout

the first year of spousal bereavement, agoraphobia in the first 6

months, and social phobia in the next 6 months.7 Some bereaved

families may question the purpose of living because of loss of a

family member, and such reduced spiritual well-being is an

important factor in the reduction of quality of life.

These problems have been addressed through interventions

such as a meaning-oriented approach for grief from the view

of constructivism,8 cognitive–behavior therapy for complicated

grief,9 group therapy,10 and support groups.11 The Bereavement

Life Review is a psychotherapy in which bereaved families

interact with a clinical psychologist. This therapy is effective for

decreasing depression and increasing spiritual well-being of

bereaved families in which a family member died in a palliative

care facility.12 However, since palliative care wards are specia-

lized for individual care, bereaved families may be satisfied with

this kind of care and their grief may not be as serious as that in

families with a family member who died in a nonspecialized pal-

liative care setting.

The current policy of the Japanese Ministry of Health,

Labour and Welfare is that psychotherapy should be more

frequently used in all kinds of hospitals by nurses and not only

in palliative care wards by professional clinical psychologists.

Therefore, to extend the Bereavement Life Review to more

bereaved families, it is important to investigate the efficacy

of the therapy on depression and spiritual well-being of

bereaved families with a family member who died in a nonpal-

liative care setting.

1 Faculty of Nursing, St Mary’s College, Fukuoka, Japan2 School of Human Welfare Studies, Kansai Gakuin University, Tokyo, Japan3 Gunma University Graduate School of Health Sciences, Japan4 Koekisha Co. Ltd

Corresponding Author:

Michiyo Ando, RN, PhD, St Mary’s College, Tsubukuhonmachi 422, Kurume

City, Fukuoka, Japan.

Email: [email protected]

American Journal of Hospice& Palliative Medicine®

2014, Vol. 31(3) 327-330ª The Author(s) 2013Reprints and permission:sagepub.com/journalsPermissions.navDOI: 10.1177/1049909113488928ajhpm.sagepub.com

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Methods

Participants

A leader of a support group in one area in Japan selected par-

ticipants in the study from members of the support group

based on the following inclusion criteria: (1) bereaved fami-

lies with a family member who died in an ordinary hospital

ward and not in a palliative care unit, (2) family members

aged �20 years, and (3) family members capable of replying

to questionnaires. The exclusion criteria were (1) participants

who may have serious psychological distress as determined

by a clinical psychologist and (2) participants with serious

dementia. A total of 21 family members registered in the study,

but 1 person subsequently declined participation because of

mental problems. Thus, a total of 20 family members partici-

pated in the study (10 males and 10 females). The mean age was

68.8 + 11.7 years. The background of the participants is shown

in Table 1.

Intervention: Bereavement Life Review

There were 2 interview sessions in the Bereavement Life

Review. In the first session, the participants reviewed their

life with a clinical psychologist. Each interview session lasted

30 to 60 minutes, and the interval between the first and the

second sessions was 1 week. The question items and order

were changed from our previous study,12 based on the pre-

ferred flow of the therapy. The following questions were

asked in the first session: (1) What are your most vivid mem-

ories when the deceased was doing well? (2) While taking

care of the family member, what are your most vivid mem-

ories? (3) Have you gone through some changes due to the

death of the family member? (4) What is the most important

thing in your life and why? (5) What will you value in the

future?

The narratives of the participants were recorded. After the

first session, the interview was transcribed verbatim and the

therapist made a simple album. In the album, key words from

the answer to each question were selected and the therapist

pasted photos or drawings from books or magazines that were

related to the participant’s words or phrases, in order to make

the album beautiful and memory provoking. In the second

session, the family member and the therapist viewed the album

together and agreed upon the contents.

Outcome Measurements

The Japanese version of the Functional Assessment Chronic

Illness Therapy–Spiritual (FACIT-Sp),13 which was translated

from the original version, was used to measure spirituality.

Items are scored on 5-point scales ranging from 4 (strongly

agree) to 0 (strongly disagree). The Beck Depression Inventory

Second Edition (BDI-II)14 was used to measure the depression

of the family members. The BDI-II includes 21 items scored on

a 4-point scale, ranging from 3 (strongly agree) to 0 (strongly

disagree). The validity and reliability of the FACIT-Sp and

BDI are well established.

Procedure

The ethical and scientific validity of the study was approved by

the institutional review board of St Mary’s College. After the

participants agreed to take part in the study, an interview day

was determined. Before the interview, the interviewer

explained the study to the participant and obtained a signed

informed consent. The Bereavement Life Review was con-

ducted in a private room by a certified counselor provided by

the support group. The participants completed the FACIT-Sp

and BDI before and after the therapy.

Data Analysis

Scores on the FACIT-Sp and BDI of each bereaved family

member were calculated individually and analyzed statistically

using Statistical Package for Social Sciences (SPSS) version

21.

Results

After the Bereavement Life Review, the BDI-II score

decreased from 14.4 + 9.2 to 11.6 + 7.4 (t ¼ 2.1, P ¼ .045,

n ¼ 20) and the FACIT-Sp score increased from 24.3 +10.1 to 25.9 + 11.1 (t ¼ �1.0, P ¼ .34, n ¼ 20). These results

are summarized in Table 2. The BDI-II score was significantly

correlated with the FACIT-Sp score (r ¼ �.75, P ¼ .00).

The BDI scores of females were significantly higher than

those of males both pre (male: 9.3 + 8.9, female: 19.5 +6.6, P ¼ .02) and postintervention (male: 7.2 + 5.9, female:

16.0 + 6.2, P ¼0.02). The FACIT-Sp scores of male were

higher than those of females pre (male: 29.1 + 11.3, female:

19.5+6.2, P ¼ .59) and postintervention (male: 29.8 +11.1, female: 21.9 + 10.0, P ¼ .21; Table 3).

Table 1. Background of the Bereaved Family Members.

Characteristics Number %

Mean age, years 68Gender


Relationship with the DeceasedSpouse 18 90Child 2 10

Time after death, months 22

Table 2. Scores for FACIT-Sp and BDI-II Pre- and Post-Bereaved LifeReview.

Scale Pre Post t P

BDI-II 14.4 + 9.2 11.6 + 7.4 2.1 .045FACIT-Sp 24.3 + 10.1 25.9 + 11.1 �1.0 .34

Abbreviations: BDI, Beck Depression Inventory Second Edition; FACIT-Sp,Functional Assessment Chronic Illness Therapy–Spiritual.

328 American Journal of Hospice & Palliative Medicine® 31(3)



Discussion

Effects of the Bereavement Life Review After Deathof a Family Member in a Nonpalliative Care Setting

The significant reduction in BDI-II scores suggests that the

Bereavement Life Review is effective for depression. In the

BDI-II, a score �17 points indicates clinical depression. The

mean scores of the participants were 14.4 (pre) and 11.6 (post),

showing that their mean level of depression had not reached a

clinical level. Although the decrease in depressive symptoms in

bereaved families was significant, the Bereavement Life

Review may be particularly effective for participants with

severe depression, with similar effects to those in Family

Focused Grief Therapy.10,15

The increase in FACIT-Sp scores from 24.3 + 10.1 to 25.9

+ 11 (t¼�1.0, P¼ .341) suggests the efficacy of the Bereave-

ment Life Review for improving the spiritual well-being of

bereaved family members, although the change was not signif-

icant. The lack of significance might be due to a ceiling effect

because the participants were able to attend a support group to

find meaning in their life. Some of the participants said that

they would like to talk about their life experience to younger

people in the life review, and they seemed to find meaning in

this new role of connecting to the younger generation. This

function of review is similar to that in transmitted reviewing,16

in which the reviewer asks the participant to recall and talk

about old memories.

Bereavement Life Review as Universal Therapy

To examine the universality of the Bereavement Life Review,

we compared the results in the current study (nonpalliative care

group) with those of our previous evaluation of this therapy in

families of a patient who died in a palliative care unit (pallia-

tive care group).12 The efficacy of the therapy on depression

symptoms was the same in the 2 studies, which supports the

universality of the therapy. Moreover, the total depression level

of the nonpalliative care group (pre 14.4 and post 11.6) was

higher than that of the palliative group (pre 10.8 and post

6.8). This may be because families in palliative care units

receive support for anticipating grief, but families in nonpallia-

tive care settings do not receive similar support.

Regarding effects on spiritual well-being, the increase in

FACIT-Sp scores in the nonpalliative care group (pre 25.0 and

post 26.4), although not significant, matches the results in the

palliative care group (pre 19.9 and post 22.8), thus suggesting

that the Bereavement Life Review has effects on spiritual

well-being. Warden17 described 4 elements of this process:

(1) acceptance of the reality of the loss, (2) experience of the

pain of grief, (3) adjustment to an environment from which the

deceased is missing, and (4) reinvestment of energy in other

possibilities. Since the mean time after the patients’ death

was about 2 years, the participants may have been in ‘‘the

process of adjustment’’ or ‘‘reinvestment.’’ The Bereavement

Life Review may promote this adjustment or reinvestment, and

spiritual well-being may improve. This suggests that further

clarification of the background to this promotion of spiritual

well-being is required.

Characteristics of Participants

The BDI-II score was significantly higher in females than in

males pre- and postintervention, indicating a higher depression

level of females in this study. This result is consistent with the

findings that the depression level of females who participate in

this kind of research is higher than that of males.18 Moreover,

the depression level of males who do not participate in the

research is higher than that of females18; that is, only males

with low-level depression might be the participants, resulting

in low BDI-II scores for males. There may also be differences

in terms of the requirements of participants. Females with high

depression require people to listen to their sadness or share

their emotions, whereas males with low depression want to

express their feelings. In contrast, FACIT-Sp scores for males

were higher than those for females. Many of the male partici-

pants had a high social status or were wealthy and had many

reasons to live. These characteristics of the participants in the

study should be considered in interpreting the results. In a

previous study,19 it was found that males were more affected

due to the death of a family member because of lack of social

support,20 however, indicating that males require social support

positively.

Limitations and Conclusion

The limitations of the study include the lack of a control group,

the limited duration, and performance of the study in only 1

area and at only 1 institution. Within these limitations, we

found that the Bereavement Life Review was effective for

those with depressive symptoms and psychological care of

bereaved families in whom a family member died in a setting

other than a palliative care unit. This finding and our previous

results for bereaved families with a family member who died in

Table 3. Scores on the BDI and FACIT-Sp (Mean + SD) for Males and Females.

BDI-II FACIT-Sp

Male Female P Male Female P

Pre 9.3 + 8.9 19.5 + 6.6 .02 29.1 + 11.3 19.5 + 6.2 .59Post 7.2 + 5.9 16.0 + 6.2 .02 29.8 + 11.1 21.9 + 10.0 .21

Abbreviations: BDI, Beck Depression Inventory Second Edition; FACIT-Sp, Functional Assessment Chronic Illness Therapy–Spiritual; SD, standard deviation.

Ando et al 329



a palliative care unit suggest that this therapy may be univer-

sally applicable.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to

the research, authorship, and/or publication of this article.

Funding

The authors disclosed receipt of the following financial support for the

research, authorship, and/or publication of this article: This study was

supported by the Pfizer Health Research Foundation.

References

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A Handbook for Healthcare Professionals. New York, NY:

Human Sciences Press, Inc; 1989.

2. Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement.

Lancet. 2007;370(9603):1960-1973.

3. Hanson RO, Stroebe MS. Bereavement in late life: coping, adap-

tation, and developmental influences. Washington, DC: American

Psychological Association; 2007.

4. Clayton PJ. Bereavement and depression. J Clin Psychiatry. 1990;

51(suppl):34-38; discussion 39-40.

5. Zisook S, Shucter SR. Uncomplicated bereavement. J Clin Psy-

chiatry. 1993;54(10):365-372.

6. Shear MK. Grief and depression: treatment decisions for bereaved

children and adults. Am J Psychiatry. 2009;166(7):746-748.

7. Jacobs SC, Hansen F, Kasl S, Ostfeld A, Berkman L, Kim K.

Anxiety disorders in acute bereavement: risk and risk factors.

J Clin Psychiatry. 1990;51(7):267-274.

8. Neimeyer RA, Wogrin C. Psychotherapy for complicated bereave-

ment: a meaning-oriented approach. Illness, Crisis Loss. 2008;

16(1):1-20.

9. Boelen P. Cognitive behavior therapy for complicated grief.

Bereavement Care. 2008;27(2):27-30.

10. Kissane DW, McKenzie M, Bloch S, Moskowitz C, McKenzie

DP, O’Neill I. Family focused grief therapy: a randomized con-

trolled trial in palliative care and bereavement. Am J Psychiatry.

2006;163(7):1208-1218.

11. Sakaguchi Y, Tsuneto S, Takayama K, Tamura K, Ikenaga M,

Kashiwagi T. Tasks perceived as necessary for hospice and pallia-

tive care unit bereavement services in Japan. J Palliat Care. 2005;

20(4):320-323.

12. Ando M, Morita T, Miyashita M, Sanjo M, Kira H, Shima Y.

Effects of bereavement life review on spiritual well-being and

depression. J Pain Symptom Manage. 2010;40(3):453-459.

13. Noguchi W, Ono T, Morita T, et al. An investigation of reliability

and validity to Japanese version of the Functional Assessment of

Chronic Illness Therapy–Spiritual (FACIT-Sp). Jpn J Gen Hosp

Psychiatry. 2004;16:42-47.

14. Beck AT, Rovert A, Gegory KB. Beck Depression Inventory. 2nd

ed. The Psychological Cooperation, 1996. (Kojima M, Fukukawa

T, Traslated, The Japanese version BDI-2nd ed.). Nippon Bunka

Kgakusya, 2003.

15. Dumont I, Kissane D. Techniques for framing questions in

conducting family meetings in palliative care. Palliat Support

Care. 2009;7(2):163-170.

16. Watt LM, Wong P. A taxonomy of reminiscence and therapeutic

implication. J Gerontol Soc Work. 1991;16(1-2):37-57.

17. Warden JW. Grief Counseling and Grief Therapy. London, UK:

Tavistock/Routledge; 1988.

18. Stroeve MS, Stroeve W. Who participates in bereavement research?

a review and empirical study. Omega. 1989;20(1):121-129.

19. Strobe W, Schut H. Risk factors in bereavement outcome:

A methodological and empirical review. In: Stroebe MS, Han-

son RO, Stroeve W, Schut H, eds. Handbook of Bereavement

Research Consequences, Coping and Care. Washington, DC:

American Psychological Association; 2001:349-371.

20. Ferraro KF, Mutran E, Barresi CM. Widowhood, health, and friend-

ship support in later life. J Health Soc Behav. 1984;25(3):245-259.

330 American Journal of Hospice & Palliative Medicine® 31(3)



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Online Journal of Japanese Clinical Psychology2015, May, Vol.2, 1-9

Introduction

Bereaved family members may experience physical or psychological problems as a grief reaction (Burnell & Burnell, 1989; Stroebe, Schut, & Stroebe, 2007). Hanson & Stroebe (2007) proposed that grief comprises emotional reactions. About 15% of bereaved persons experience a more problematic grief process with symptoms of depression or posttraumatic stress (Bonanno & Kaltman, 1999). Thus, depression is a serious psychological problem for bereaved family members (Shear, 2009). Some bereaved family members also lose meaning of life or peace of mind because of the loss

of a family member. Such loss of meaning of life or peace of mind is referred to as spiritual pain (Murata & Morita, 2006), and spiritual care is important for these people because spirituality is related to quality of life. The Bereavement Life Review provides one method o f sp i r i tua l care . Th i s approach has been shown to be effective for alleviation of depression and elevation of spiritual well-being in bereaved families with a patient who died in a palliative care unit (PCU) (Ando et al., 2010) or in a general hospital (Ando et al., 2014). Life review is also useful for mental health in older community-dwelling women (Binder

Potential utility of bereavement life review for depression andspiritual well-being of bereaved family members in home care:Contents of narratives

Michiyo AndoFaculty of Nursing, St. Mary’s College

Abstract: The aim of the study was to investigate the potential utility of the Bereavement Life Review as psychological intervention for individuals who provided care for a terminally ill family member and to examine the contents of narratives in the intervention. The participants were 7 bereaved family members who underwent this intervention over two sessions in two weeks and completed the FACIT-Sp and BDI-II questionnaires to measure spiritual well-being and depression, respectively. Contents of narratives were analyzed qualitatively. The FACIT-Sp score significantly increased and the BDI-II score decreased after the intervention. From the narratives, factors such as “human relationships” and “gratitude to others” were selected as “most important things,” “characteristics or tastes of the deceased” and “memories of trip” as “memories of the deceased,” “realization of patient’s hopes” and “regret” as “memories of caring at home,” and “independence and preparation to live alone” and “use of experience of home care” as “changes through experience of caring.” Based on the results, the Bereavement Life Review has the potential to elevate spiritual well-being and alleviate depression.

Keywords: bereaved family, home care, depression, spiritual well-being, life review

Copyright © 2015 The Association of Japanese Clinical Psychology

Brief ReportPublished on Web 05/15/2015

Michiyo Ando

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et al., 2009). However, it is unclear if this intervention is useful for bereaved families who took care of a dying patient at home. Previous studies have shown that these families may experience burden of care, particularly with regard to the suffering of patients or the practical aspects of care (Ando et al., 2015; Ishii et al., 2012). In addition to these burdens and difficulties, bereaved families have little chance to receive psychological care after a patient has died at home, although some may suffer from psychological problems such as depression or spiritual pain. For this reason, we examined the utility of the Bereavement Life Review for depression and spiritual well-being of bereaved families. A bereaved family member goes through both positive and negative experiences while caring for a patient (Ando et al., 2014; Kang et al., 2013). However, the views of bereaved families with patients who died at home have not been examined as narratives. Therefore, the goal of this study was to examine the potential of the Bereavement Life Review for elevation of spiritual well-being and alleviation of depression of bereaved family members who took care of a patient at home at the end of life, with qualitative analysis of narratives associated with this intervention.

Methods

Participants

The participants were 7 bereaved family members (Table 1) of cancer patients who required services of a home care clinic, home visit nurses, or a case management agency that provided 24-hour home care services. The inclusion criteria were: 1) the patient had died at least six months ago but not longer than two and a half years ago, 2) the family caregiver and patient were both over 20 years old, 3) the family member was the primary caregiver, and 4) the family caregiver knew about the patient’s diagnosis of cancer. Family caregivers with dementia or a mental disorder were excluded from the study. The physician of the hospital chose participants based on these criteria. We first conducted a questionnaire survey and asked part icipants to attend an interview. If a person expressed intention to participate in the interview, a researcher explained the contents of the study by telephone.

Outcome measurements

The Japanese version of the Functional Assessment of Chronic Illness Therapy–Spiritual Well-Being (FACIT-Sp) scale (Noguchi et al., 2004), which is based on the original version, was used to measure spirituality. Items are scored on a 5-point

Table 1. Background of the participants

ID Age range of participant

Relationship to the patients

FACIT-SpPre

FACIT-SpPost

BDI-IIPre

BDI-IIPost

1 50-59 Child 29 32 2 32 60-69 Spouse 32 32 3 13 60-69 Child 18 20 3 34 30-39 Child 4 8 31 215 70-79 Spouse 20 32 4 46 60-69 Spouse 27 29 1 77 50-59 Spouse 12 24 24 8

Potential utility of bereavement life review for depression and spiritual well-being of bereaved family members in home care

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scale, ranging from 4 (strongly agree) to 0 (strongly disagree). The Beck Depression Inventory-II (BDI-II) (Beck, Steer, & Brown, 1996) was used to measure the depression of family members. The BDI-II includes 21 items that are scored on a 4-point scale, ranging from 3 (strongly agree) to 0 (strongly disagree). The validity and reliability of the FACIT-Sp and BDI-II are well established. The scores on both scales are presented for each participant in Table 1.

Procedure

After participants agreed to take part in the study, an interview day was determined. Before the interview, a clinical psychologist explained the study to the participant, obtained signed informed consent, and then conducted the intervention. The Bereavement Life Review consisted of two interview sessions. In the first session, the participant reviewed his/her life with a clinical psychologist. Each interview session lasted 30 to 60 minutes and the interval between the first and second sessions was two weeks. The following questions were asked in the first session: (1) What are the most important things in your life? (2) What are your main memories of the deceased when he/she was well? (3) In taking care of the patient, what are your most impressive memories? (4) Were there any changes in you caused by taking care of the patient or by the patient’s death? (5) What are your roles in your life? (6) What are you proud of in your life? The narratives of the participants were recorded. After the first session, the clinical psychologist transcribed the narrative verbatim and made a simple album. In the album, key words from the answer to each question were selected and the therapist pasted photos or drawings from

books or magazines that were related to the participant’s words or phrases in order to make the album beautiful and memory-provoking. In the second session, the family member and the clinical psychologist viewed the album together and agreed upon the contents. The ethical and scientific validity of the study was approved by the institutional review board of St. Mary’s College.

Data analysis

Scores on the FACIT-Sp and BDI-II were analyzed by t-test. Narratives were evaluated with reference to “Qualitative Analysis” (Funashima, 2001), which is based on the work of Berelson (1952). Narratives were selected from each question. These narratives were separated into the shortest sentence with a meaning, and similar short sentences were integrated into a code. Similar codes were integrated into a sub-category, and lastly, similar sub-categories were integrated into a category. To maintain reliability, this categorization (including the coding) was validated independently by two co-researchers. Inconsistencies were discussed until agreement was reached with the help of a professional in this area.

Results

The backgrounds of participants related to the level of required care, support from others, mental state as a caregiver, and status at the time of the review are shown in Table 2. Categories such as “little” “much” “too much” or “poor” were estimated from the narratives by participants.

The FACIT-Sp score significantly increased from 19.1±9.1 to 25.1±9.0 (p < .05, t = -3.31) after the Bereavement Life Review, while the BDI-II score decreased from 9.7±11.5

Michiyo Ando

4

to 6.1±6.9 (p > .05, t = 1.7), although this change was not significant. Categories selected from narratives are shown in Table 3. In this paragraph, we show categories with numbers (No.), as in Table 3. Response categories to question (1) “most important things” included “human relationships (No.1),” “growth of children and grandchildren (No.2),” and so on; those to question (2) “memories of the deceased” included “characteristics or tastes of the deceased (No.6),” “memories of trip (No.7) ,” and so on; those to question (3) “memories of caring at home”

included “realization of the patient’s hopes (No.9),” “expected grief for loss (No.10),” and so on; those to question (4) “changes through experience of caring” included “appreciation to others (No.15),” “independence and preparation to live alone (No.16),” and so on ; those to question (5) “roles in your life” included “taking care of parents (No.20),” “being well myself (No.21)” and so on; and those to question (6) “pride in your life” included “caring until the last moment (No.23)” and “feeling happy about everything (No.24).”

Table 2. Status of caregivers: Categories such as “little” “much” “too much” or “poor” were estimated from the narratives by participants.

Level of care needed

Support from others

Mental status of caregiver in caring

Status at review

ID#1 Little Much:Received support from many relatives. Took ca re o f he r mother and children with pleasure.

Good: Satisfaction:Reviewed memories with pleasure.

ID#2 Little Much:Received support from many persons.

Good: Satisfaction:Satisfied with her care after husband’s death.

ID#3 Much Little:Gave care only with hospital staff.

Not so good:W a s b u s y s i n c e s h e t o o k c a r e o f her father and her children.

Satisfaction:Felt attainment in giving care. Found the next role after his death.

ID#4 Too much Poor: No support from other f a m i l y m e m be r s . Medical staf f a lso relied on her.

Very bad: Worked in a hospital in the day as a nurseand took care of her father at night.

Sadness:After his death, she became depressed.S e e m e d t o experience catharsis through review.

ID#5 Much:Not used to taking care of the patient.

Little:Gave care only with hospital staff.

Tired:Daughter came back with grandchildren. Had to care for all family members.

Positive:Review of taking care produced some good me-mories.

ID#6 Little: Much:Received support from her son.

Good: Positive:H a d r e g r e t s , b u t f o u n d i n t e r e s t s , enjoyment , and a future role.

ID#7 Much:Not used to giving care.

Little:Gave care only with hospital staff.

Not so good:Her husband was angry with her caring methods.

Satisfaction:R e c o g n i z e d t h a t she took care with her s t rength and accepted herself.


5

Most of the categories were positive, but one (ID#4) of the 7 participants felt that her experience of caring was negative. She also became depressed after her father died. It may be useful for clinical psychologists to consider appropriate care for this kind of patient, and thus we describe this case in detail.

Case report

The participant (ID#4) was a 30-year-old woman. She was not married and worked as a nurse. Her father suffered from bad health but had not seen a doctor. When he finally consulted a doctor, he was diagnosed with advanced-stage cancer. She decided to take care of him at home, because he wanted to spend the remaining time of his life in

Table 3. Categories from narratives by content analysis in the Bereavement Life Review

Question Category Sub-category

1. Most important things

1) human relationships ・friends, human relations

2) growth of children and grandchildren ・children, grandchildren・raising children

3) making maximum effort ・no regrets・maximum effort

4) gratitude to others ・gratitude

5) rich emotion ・being affected by others・being affected by myself

2. Memories of the deceased

6) characteristics or tastes of thedeceased

・favorite food, tastes・characteristics of the deceased

7) memories of trip ・short time for sharing ・gratitude of sharing・trip with recognition of death

8) positive recognition of work ・work for the family・respect from persons in company

3. Memories of caring at home

9) realization of the patient’s hopes ・priority to patients’ hopes・expectation for family

10) expected grief for loss ・bathing with family

11) good memories of parting ・not depressed about prospect of death

12) regret ・time to move to home care・being alone at the last moment

13) disagreement about care among family members

・not hoping for home care・conceal disease state from the patient

14) caring alone ・dependent on family・dependent on nurses

4. Changes through experience of caring

15) appreciation to others ・expression of gratitude from patients・gratitude as a career

16) independence and preparation to live alone ・trying to be independent・preparation for my terminal stage

17) knowing families’ pain in caring ・knowing others’ pain・knowing families’ feelings

18) use of experience of home care ・reflection on lack of care and learning・learning how to care

19) recognition of care by medical staff ・support of families by staff

5. Roles in your life 20) taking care of parents ・taking care of a single parent

21) being well myself ・not a burden to others・being well

22) raising children ・taking care of children ・taking care of children’s health

6. Pride in your life 23) caring until the last moment ・burden of taking care ・strong desire to care

24) feeling happy about everything ・feeling happy about everything・gratitude

Michiyo Ando

6

a terminal stage at home. The participant had a mother and a brother; however, her mother did not agree with home care, and her brother worked in another region and entrusted nursing care to her. She provided home care with help from a visiting nurse and doctor. She felt burdened by caring for her father alone. She worked during the day as a nurse and took care of her father at night. The double duty left her exhausted, but she continued to offer care until her father died. From the day he died, she could not sleep and became depressed. She eventually changed her work place. After 12 months had passed, she expressed her intention to participate in this study because she wanted to tell her story. Her pre-intervention BDI-II score was very high and her FACIT-Sp score was low; however, post-intervention, her BDI-II score decreased and her FACIT-Sp score increased.

Discussion

Utility of the Bereavement Life Review

The significant increase in FACIT-Sp score suggests that the Bereavement Life Review can elevate spiritual well-being of family members involved in home care. In a previous study, the FACIT-Sp score of bereaved family members with patients who died in general hospitals (Ando et al., 2014) changed from 24.3 to 25.9 after the intervention, whereas in the current study, this score changed from 19.1 to 25.1. The high pre-intervention FACIT-Sp score of the previous study may have been due to the participants being members of a support group for grief care, with the male participants particularly finding new meaning in the support group. In contrast, the participants in the current

study did not receive this kind of support. However, the increase in post-intervention FACIT-Sp score to the same level as in the earlier study indicates the utility of the Bereavement Life Review for elevation of spiritual well-being. The average BDI-II score decreased from 9.7 to 6.1, although this change was not significant. Since the cutoff for clinical depression is over 17 points, the participants were not depressed at baseline totally. The BDI-II score in the general hospital study (Ando et al., 2014) changed from 14.4 to 11.6, which indicates that the depression level in the home care study was lower at baseline, compared to participants with patients in general hospitals. This difference may be due to bereaved family members being satisfied with home care, with most not feeling sadness or confusion. In contrast, the female bereaved family members in the general hospital study suffered from sadness and confusion after their husbands’ death. Thus, with the exception of subject ID#4, bereaved family members who provided home care were less depressed than those with a patient who died in a general hospital. In the categories selected from the narratives, family members who gave home care narrated positive memories such as “memories of trip (No.7),” “realization of the patient’s hopes (No.9) ,” and “good memories of parting (No.11).” They seem to be satisfied with home care, which might have alleviated depression.

Comparison of categories with previous

studies

In the current s tudy, most o f the categories were positive, including “taking care of parents (No.20),” “raising children (No.22),” and “caring until the last moment (No.23)” but a few were


7

negative, including “disagreement about care among family members (No.13)” and “caring alone (No.14).” First, we compared categories in the current study with those identified for caring in a PCU (Ando et al., 2011) and general hospital (Ando et al., 2014). There were 21 participants in the PCU study with a mean age of 65 years. The results from the three studies should be comparable because the time after death was about 2 years in each study and the relationships to the deceased were almost all spouses or children. Categories such as “human relationships (No.1),” “appreciation to others (No.15),” and “gratitude to others (No.4)” were selected by bereaved families in home care. These factors were also selected by bereaved families in PCUs or general hospitals. Common to bereaved family members was that they all recognized human relationships as most important because they were helped by other people after the patient’s death and felt appreciation or gratitude to others. I n c o n t r a s t , “ h e a l i n g p r o c e s s , ” “re la t ionships wi th soc ie ty , ” and “performance of new family roles” appeared only for participants in the PCU and general hospital studies. This may be because family members in home care performed new roles from a very early stage, which was not perceived as a big change. They also lived in the community and most of their neighbors knew that they were taking care of a patient at home, and thus the participants did not consider a new relationship with society. In addition, they had ample time to witness the changes in the patient, feel the expectancy of death, and finally accept the death of the patient; thus, they did not experience a particular healing process.

Review of Case ID#4

Participant ID#4 in the current study had a very high depression score. Her mother, the spouse of the patient, did not agree with home care, but the participant wanted to realize her father’s hope to spend his remaining time at home. This issue is included in the category of “disagreement about care among family members (No.13).” Furthermore, her mother was afraid of seeing her weak husband and did not take care of him. Hospital staff entrusted nursing care to ID#4 because she was a nurse. This issue is included in the category of “caring alone (No.14).” This case indicates that the level of required care, support from others, and the caregiver’s mental state in providing care need to be considered (Table 2). The high level of care required from ID#4 resulted in her depression. Thus, although there are many good aspects to home care, the burden of caregivers must be considered, and Japanese people may find it hard to see suffering of patients (Kitayama, 1993). What effect did Bereavement Life Review have on participant ID#4? She had joined this study by chance and received the intervention. Bonding (Bowlby, 1980) to the deceased was strong and the review of various emotions may be helpful to allow her to let go of the deceased. Generally, reviewing or telling a depressing story about a patient has been suggested to promote symptoms; however, in this case, this process did not promote depression but rather allowed the participant to express her feelings. Thus, the Bereavement Life Review may be helpful to allow family members to let go of the deceased.

Role of clinical psychologists

Clinical psychologists function in various

Michiyo Ando

8

fields, but few are involved in the treatment of bereaved family members who have been taking care of patients at home. However, the high BDI-II scores in some of the participants of this study suggest that family caretakers have a need for psychological care. From this study, we identified three points for consideration by a psychologist with regard to home care: 1) The mental state of a family member during caring for a patient and of the burden of care should be assessed. 2) As for grief care, the Bereavement Life Review may be useful for a bereaved family member at the normal mental health level. 3) When a bereaved family member is depressed, a clinical psychologist can provide support in collaboration with other medical staffs.

Limitations and future research

This study is limited by the small number of participants, which makes it difficult to generalize the results. A future study with more subjects is required to validate the utility of the Bereavement Life Review for bereaved family members with patients who died at home. Moreover, the FACIT-Sp scale was developed to assess spirituality for patients with chronic illness; thus, strictly, we cannot measure spirituality of bereaved family members using this scale. A scale for measurement of spirituality in this population needs to be developed. Terminally ill patients are currently advised to spend their final time at home, with promotion of home care from hospice physicians and nurses. When patients are in a hospital, family members may have the opportunity to receive psychotherapy from clinical psychologists. However, there are fewer opportunities for receiving psychotherapy when patients are cared for at home and even fewer chances after the patients’ death. Thus, in the future, we plan

to conduct the Bereavement Life Review for bereaved families in home care settings to confirm the efficacy of this approach and promote its use as regular psychological care.

“I especially thanks to participants and Dr.

Yasuyoshi Ninosaka and medical staffs in Ninosaka

Clinic at heart.”

References

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Ando, M., Sakaguchi, H., Shiihara, Y., & Izuhara, K. (2014). Universality of Bereavement Life Review for spirituality and depression in Bereaved Families. American Journal of Hospice & Palliative Care, 31, 327-330.

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Kang, J., Shin, D. W., Choi, J. E., Sanjo, M., Yoon, S. J., Kim, H. K., Oh, M. S., Kwen, H. S., Choi, H. Y., & Yoon, W. H. (2013). Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patients. Psycho-Oncology, 22, 564-571.

Kitayama, O. (1993). Do not look (in Japanese Mirunano kinshi), Iwasaki gakujyutsu Publisher.

Lehman, D. R., Davis, C. G., Delongis, A., Wortman, C. B., Bluck, S., Mandel, D. R., & Ellard J. H.

(1993). Positive and negative life changes following bereavement and their relations to adjustment. Journal of Social & Clinical Psychology, 12, 90-112.

Murata, H., & Morita, T. (2006). Conceptualization of psycho existential suffering by the Japanese task force: The first step of nationwide project. Palliative & Supportive Care, 4, 279-285.

Noguchi, W., Ono, T., Morita, T., Aihara, K., Tsujii, H., Shimozuma, K., Matsushima, E. (2004). An investigation of reliability and validity to Japanese version of the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp). Japan Journal of General Hospital Psychiatry, 16, 42-47.

Shear, M. K. (2009). Grief and depression: Treatment decisions for bereaved children and adults. American Journal of Psychiatry, 166, 746-748.

Stroebe, M., Schut, H., & Stroebe, W. (2007). Health outcomes of bereavement. Lancet, 370, 1960-1973.

(Accepted April 2, 2015)

Changes experienced by and the future values ofbereaved family members determined usingnarratives from bereavement life review therapy

MICHIYO ANDO, RN, PHD,1 YUKIHIRO SAKAGUCHI, PHD,2

YASUFUMI SHIIHARA, MD, PHD3

AND KUMI IZUHARA4

1Faculty of Nursing, St. Mary’s College, Fukuoka, Japan2School of Human Welfare Studies, Kwansai Gakuin University, Osaka, Japan3Gunma University Graduate School of Health Sciences, Maebashi, Japan4Customer Service Department, Koekisha Co. Ltd., Osaka Head Office, Osaka, Japan

(RECEIVED April 3, 2013; ACCEPTED July 18, 2013)

ABSTRACT

Objectives: The goals of this study were to investigate the changes experienced by bereavedfamily members in Japan and to determine what activities they would value in the future basedon narratives from a bereavement life review, which is a type of psychotherapy used to treatdepression and promote spiritual well-being.

Methods: The participants were 20 bereaved Japanese family members who underwent twosessions of bereavement life review over a period of two weeks.

Results: Using qualitative analysis, we identified four areas of changes (“learning from thedeceased’s death and self-growth,” “healing process,” “relating with others,” “relating withsociety,” and “performing new family roles”) and five categories of valued activities (“continuinggrief work,” “living with a philosophy,” “attaining life roles,” “keeping good humanrelationships,” and “enjoying life”).

Significance of results: “Learning from the deceased’s death and self-growth” and “relatingwith others” are common in Japan and Western countries, whereas “relating with society,”“healing process,” and “performing new family roles” are more characteristic of Japan. Thestrength of bonding with the deceased may influence the values of bereaved family members. Weconcluded that bereavement life review therapy can contribute positively to their grief work.

KEYWORDS: Bereaved family, Changes, Values, Bereavement life review

INTRODUCTION

Bereaved family members may experience physicalor psychological problems as part of the grieving pro-cess (Burnell & Burnell, 1989; Stroebe et al., 2007).Hanson and Stroebe (2007) proposed that grief com-prises emotional reactions such as depression andanxiety, cognitive reactions such as suppression andhelplessness, and physical reactions such as fatigue,sleep disturbance, and eating disorders. About 15%

of bereaved persons experience a more problematicgrieving process in terms of symptoms of depressionor posttraumatic stress (Bonanno & Kaltman, 1999).It has been demonstrated that depression is a seriouspsychological problem for bereaved family members(Shear, 2009).

Bereaved family members experience both thepositive and negative aspects of grief during the pro-cess of caring for family members (Kang et al., 2013).The positive aspects, often referred to as “growth,”have been demonstrated in previous studies. Lehmanand colleagues (1993) studied changes experiencedby bereaved family members among 40 individualswho had lost a spouse and 54 who had lost a child

Address correspondence and reprint requests to: Michiyo Ando,St. Mary’s College, Tsubukuhonmachi 422, Kurume City, Fu-kuoka, Japan. E-mail: [email protected]

Palliative and Supportive Care (2015), 13, 59–65.# Cambridge University Press, 2013 1478-9515/13doi:10.1017/S1478951513000990

59


via a motor vehicle accident 4–7 years prior to beinginterviewed. There were three open-ended questionsrelated to positive and negative life changes, andthey identified the following categories: “increasedself-confidence,” “increased concern for others,” “in-creased emphasis on family,” “greater appreciationfor life,” and “increased religiosity/faith.” Tedeschi& Calhoun (1996) developed a posttraumatic growthinventory that included these domains: “relatingwith others,” “new possibilities,” “personal strength,”“spiritual change,” and “appreciation of life.” “Hope”may be of value in the future, and there is no denyingits importance in protecting bereaved persons fromfeelings of helplessness (Milberg & Strang, 2011).However, the few studies that have examined this is-sue were conducted mainly in Western countries, notin Japan.

In our study, we investigated these issues usingbereavement life review. This psychotherapeuticmethod is specifically aimed at elevating the qualityof life of bereaved family members. “Life review” isbased on the developmental theory of Errikson(1950), according to which a person who confrontshis own death can integrate his present life by re-viewing his entire life. This approach has been shownto be effective for alleviation of depression and el-evation of spiritual well-being in the bereaved famil-ies of patients who died in a palliative care unitwhere specialized care was offered to patients andfamilies (Ando et al., 2010, where the details oflife review are explained comprehensively). Thoseparticipants were recruited in a survey using ques-tionnaires. The Ministry of Health, Labour, andWelfare (2013) recently promoted the notion that allpatients should enjoy support to elevate quality oflife both in palliative care units and on normal hospi-tal wards. We thus employed this therapeutic tech-nique for the bereaved family members in thepresent study and showed that it can be effectivefor treating depression and enhancing spiritualwell-being (Ando et al., 2013). The present study isa secondary analysis of that investigation.

Upon offering this treatment, we found some ques-tions very difficult to answer, including those dealingwith “pride” and “important points in a person’s life”(Ando et al., 2012), so we utilized a few select itemsfor the current study. To promote finding meaningand reconstructing the lives of the bereaved, we ad-ded questions on “changes during the bereavementexperience” and “activities to be valued in the future”(future values). There are few studies on these itemswith bereaved families in Japan, so the aim of thepresent study was to investigate the associated fac-tors as derived from narratives from the bereavementlife review. We also posited that “change” includes“growth” and “values” includes “hopes.”

METHODS

Participants

The support group leader chose participants whomet the following inclusion criteria: (1) that they be-long to a bereaved family whose relative died on anordinary hospital ward and not in a palliative careunit; (2) that they be aged 20 years or older, and(3) that they be capable of replying to question-naires. The following were excluded: (2) bereaved fa-milies who suffered serious psychological distress,as determined by a clinical psychologist, and (2)those with serious dementia. A total of 21bereaved family members were contacted, all ofwhom agreed to participate. One subsequently de-clined participation because of mental problems,leaving us with a total of 20 bereaved (10 males,10 females). The mean age was 68.8 +11.7 years.The background of the participants is presented inTable 1.

Procedure

The ethical and scientific validity of the study wasapproved by the institutional review board ofSt. Mary’s College. Before each interview, the counse-lor explained the study to the participant and ob-tained a signed informed consent.

The bereavement life review was conducted overtwo interview sessions. Each session lasted 30–60minutes and occurred two weeks apart. Bereaved fa-mily members reviewed their lives during session1. The five questions and their order were changedfrom our previous study (Ando et al., 2010) to providefor a better flow of the therapy: (1) What are yourmost vivid memories from when the deceased waswell? (2) In taking care of the patient, what areyour most vivid memories about them? (3) Have yougone through changes due to the death of the de-ceased? (4) What is the most important thing inyour life, and why? and (5) What will you value infuture? The therapist recorded and transcribed the

Table 1. Background of bereaved family members

Characteristic Number Percentage (%)

Mean age (years) 68+11.7Gender


Relationship to the deceasedSpouse 18 90Child 2 10

Time after death 22 months

Ando et al.60

interviews verbatim. The narratives were then com-piled into an album, from which keywords were selec-ted. Photos and drawings from books or magazinesrelated to subjects’ narratives were included tomake the album more visually attractive and mem-ory-provoking. During the second session, the two re-viewed the album together and verified the contents.The bereavement life review was conducted by a cer-tified therapist in a private room provided by the sup-port group.

Data Analysis

We employed “qualitative analysis” (see Funashima,2001), based on the work of Berelson (1952), whichinvolves creating codes, subcategories, and cat-egories. Narratives were selected from each questionrelated to “changes” and “values.” These narrativeswere edited into the shortest possible statementwithout losing meaning and coded into one subcate-gory along with similar statements. Similar subcate-gories were then integrated into one category. Tomaintain reliability, categorization and coding werevalidated independently by two coworkers, who alsoprovided professional advice. Inconsistencies werediscussed and negotiated until agreement wasreached.

RESULTS

Categories Associated with “Changes”

The categories of “changes” perceived by bereaved fa-mily members are shown in Table 2. Most partici-pants had learned many things through the deathof their relatives: they began to pay more attentionto their own health (including diet and exercise);they thought more about their own mortality, theyfelt an increased level of the sadness of loss; andthey began to be kinder to others. We grouped thesecomments under “learning from the deceased’s deathand self-growth.”

Some subjects felt they were trying to move for-ward with their lives, making an effort to change, re-cognizing the importance of the deceased, and feelinga sense of gratitude for having known the deceased.These comments were grouped under “healing pro-cess.”

Some participants had received help from othersand realized the importance of relating with others.Others felt that members of a support group had un-derstood their suffering. Still others discussed chan-ges in their relationships with parents and children.We categorized these comments under “relating withothers.”

One participant felt that being a single parentmight be a problem for their children because ofprejudice, and another felt a burden to obey ruralcustoms. We grouped these thoughts under “relatingwith society.”

The following is a sample of comments from onesubject on the changes in her life. A 50-year-old wo-man, her husband had died two years earlier:

After my husband’s death, I had to do everythingby myself. The most difficult issue was my son’smarriage. I felt there was a difference for a sonwith two parents or one parent in society. I wasvery sorry for my sons. I had three sons, and theeldest son had married, but the other two hadnot. I wanted to treat them equally, but I felt itwas difficult for me to raise them and treat themlike my eldest son. However, I remembered my hus-band’s desire that parents should raise childrenwell, and I rethought my situation and tried tomake an effort.

Some participants felt the burden of housework, andsome recognized that they were alone and had to doeverything by themselves. We grouped these issuesunder “performing new family roles.”

Categories Associated with “Values”

We then categorized the future values of bereaved fa-mily members (Table 3). Some participants went to asupport group or attended lectures about grief to easetheir anxiety, some talked with the deceased throughprayer, and others worked on distributing the belong-ings of the deceased. We integrated these issuesunder “continuing grief work.”

Some participants hoped to live healthy lives with-out regret, to live without causing problems for oth-ers, and to live independently and with hope for thefuture. We grouped these under “living with a philos-ophy.”

Some wanted to raise their children to become re-sponsible people, which we categorized under “at-taining life roles.”

Most recognized the importance of family and peerrelationships, wanted to maintain relationships, andwanted to be helpful to others. These comments weregrouped under “keeping good human relationships.”

Some were not depressed, wanted to enjoy traveland going out, and to pursue interests. These com-ments were included under “enjoying life.”

The following is a sample from the narrative of a75-year-old woman related to “enjoying life”:

It is important for me to be healthy both physicallyand mentally. Although I was very lonely and sad

Changes and values of bereaved family members 61

after my husband’s death, I thought that if I am nothealthy, my husband would worry about me fromHeaven. If I am healthy and enjoy my life, my hus-

band’s soul will be comforted. Therefore, I try tofind enjoyment in my life and to be mentally heal-thy in the future.

Table 2. Changes in bereaved family members after patient’s death

Category Subcategory Samples Codes

(1) Learning from the deceased’sdeath and self-growth

† Considering their ownhealth

† Recognition of their ownmortality

† Knowing sense of loss

† Kindness to others

† Positive recognition of self-change

† I began to consider my own health.

† I will take care of my health.

† I began to recognize my own death.

† I felt familiarity with my grave.

† I learned about the sadness of others throughfamily loss.

† I became more tender than before.

† I became kinder.

† I recognized strength through the death ofthe deceased.

† I became able to confront sadness.

(2) Healing process † Effort to change

† Thanks for the deceased

† I attend meetings to study the grievingprocess.

† I found my life’s work.

† I learned about the value of housework.

† I understand the strength of the deceased.

(3) Relating with others † Receiving help from others

† Talking about death indaily life in my family.

† Distributing belongings ofthe deceased

† I feel that others have helped me.

† Members of our support group understandme.

† We talk about death in my family in daily life.

† My children started to think about mybelongings when I die.

† I have been distributing the belongings of thedeceased.

† It is hard for me to grow the plants that thedeceased used to grow.

(4) Relating with society † Recognition of being asingle parent

† Obeying rural customs

† I am very sorry for my children because I amsingle and there is prejudice against me.

† I want to take care of my two children, thoughI am single.

† I have to obey rural customs, which istroublesome.

(5) Performing new family roles † Burden of housework

† Recognition of living alone

† I have to do the housework that my wife usedto do.

† I have to consider money related tohousekeeping.

† I have to do everything by myself.

Ando et al.62

DISCUSSION

Categories Associated with “Changes”

Bereaved family members experienced both positiveand negative aspects related to “changes” and

“values.” Previous studies have treated positive as-pects as “hopes.” We included “hopes” within “chan-ges” and compared Japanese and Western subjects.Table 4 presents the commonalities and differencesbetween the results of our study and those of Lehman

Table 3. Valued activities for the future of bereaved family members

Category Subcategory Sample Codes

(1) Continuing grief work † Healing themselves

† Maintaining relationshipswith the deceased

† Distributing belongings of thedeceased

† I still have grief.

† I try to go out and to avoid staying indoors.

† I talk to the grave.

† I live fully in this world in order to report to thedeceased when I go to heaven.

† I distribute the belongings of the deceased.

† I am glad that my child were close to thedeceased.

(2) Living with a philosophy † Being healthy

† Living without regret

† Not annoying others

† Living independently

† Having hope

† Being healthy is important.

† Being healthy seems to be a memorial for thedeceased.

† I will live my life with free will.

† I want to talk about my sad experience to helpothers.

† I will not create problems for my children.

† I want to be healthy and not create problems formy children.

† I will live independently.

† I wrote my living will.

† I will live with some hope.

† I want to live until my grandchildren marry.

(3) Attaining life roles † Raising children

† Memorial service

† I want to raise my children as fine socialpersons.

† I want my children to live independently.

† I will plan a memorial service for 7 years.

(4) Keeping good humanrelationships

† Evaluating familyrelationships

† Evaluating peer relationships

† Being helpful to others

† I regard family relationships as important.

† I will keep a suitable distance with my relatives.

† I want to treat others with tenderness andconsideration.

† I want to value reliance among my friends.

† I want to be helpful to others.

† I feel a reason for living when I am helpful toothers.

(5) Enjoying life † Enjoying traveling and goingout

† Enjoying interests

† I will enjoy traveling or going out.

† I will enjoy interests.


et al. (1993) and Tedeschi and Calhoun (1996). Wefound that there are similarities between “learningfrom the deceased’s death and self-growth” in ourstudy and “increased self-confidence,” “personalstrength,” and “new possibilities” in others. So acrossthe two cultures, bereaved family members had aheightened recognition of their own mortality andfelt more self-confidence and personal strength.

Participants mentioned “relating with others” inthe present study, and this factor appeared in theWestern studies as “increased concern for others,”“increased emphasis on family,” and “relating withothers.”

One of the factors in the current study was “relat-ing with society.” One participant said that her chil-dren started talking to her about how she wantedthem to treat her belongings after she died. Anothersaid that she felt sorry for her children because it isdesirable for children to have two parents—a tra-ditional Japanese prejudice. Mourning customs inrural areas are pervasive and difficult to avoid, andsome indicated that they did not like such customs.

Regarding differences, “performing new familyroles” originates from an old Japanese custom wherewomen do the housework and men take on mostother activities. This change was thus particularlysignificant for some participants. The category maybe less common in Western studies, but it appearedin Higashimura et al. (2001) in a Japanese surveyquestionnaire as “change of lifestyle.”

With respect to the “healing process,” bereaved fa-mily members felt sad about their loss, cherishedtheir memories, recognized the importance of the de-ceased, and were grateful for having known them.Thinking about relationships with the deceased orreflecting on their relationships may be unique forJapanese subjects; some made an effort to adjust totheir new lives and sadness by engaging in such ac-tivities as joining a grief care study group.

There are some categories that did not appear inthe present study that have appeared in other

studies. “Appreciation for life” has emerged inmany previous studies and demonstrates how be-reaved families can appreciate their life throughthe loss of a family member (Lehman et al., 1993; Te-deschi & Calhoun, 1996). However, our participantsdid not express a newfound “appreciation for life,”perhaps because they were pondering their owndeaths, as they were mainly over the age of 55.They felt it was natural for old people to die, not in-consistent with natural processes. Similarly, “spiri-tuality” did not show up in the present study,probably because most participants did not practicea particular religion. Many studies have demonstra-ted the ability of religiosity to promote posttraumaticgrowth and ameliorate the grieving process (Currieret al., 2013).

Categories Associated with “Values”

There have not been many studies that have exam-ined the future values of bereaved family members,so we compared such values expressed as in our studywith hopes expressed in others. Some bereaved fa-mily members had partly completed the grieving pro-cess and wanted to heal themselves while remaininglinked to the deceased, consistent with “bonding” ingrief (Stroebe & Schut, 2005). Some found new pathsto follow and chose to move in those directions, whileothers wanted to enjoy traveling and going out more.

Some bereaved women have wanted to speak pub-licly about the death of their mother in the hope ofhelping others in similar situations (Tracey, 2011).One group of investigators (Dyregrov et al., 2011)showed that the bereaved are motivated by thehope of helping others. Our results suggest that thebereavement life review might be useful in allowingexpression of these hopes and future wishes.

We suggest that “continuing grief work” and “liv-ing with a philosophy” following the death of a lovedone may demonstrate strong bonding between the de-ceased and the bereaved, while “attaining life roles,”

Table 4. Coomn and different factos about changes through family’s death in Japan and Western countries

Present study Lehman et al. (1993) Tedeschi & Calhoun (1996)

Commonfactor

† Learning from the deceased’sdeath and self-growth

† Relating with others

† Increased self-confidence

† Increased concern for others.

† Increased emphasis on family

† Personal strength

† New possibilities

† Relating with others

Differentfactor

† Relating with society

† Performing new family roles

† Healing process

† Greater appreciation for life

† Increased religiosity/faith

† Appreciation of life

† Spiritual change

Ando et al.64

“keeping good human relationships,” and “enjoyinglife” suggest milder bonding. These categoriessuggest that the bereaved perform daily roles andlook to the future. The concept of bonding is presen-ted in the context of the attachment theory put for-ward by Bowlby (1980); however, these suggestionsrequire confirmation by further studies.

Limitations

One limitation of the study is that all participantswere members of a support group for grief care andwere actively seeking to heal themselves, to studythe grieving process, and to help people going throughthe grieving process. Some were making progresswith the grieving process and others were not de-pressed. These characteristics may have had some in-fluence on the results, so generalization of ourfindings will require inclusion of more participants.

ACKNOWLEDGMENTS

This study was supported by the Pfizer Health ResearchFoundation.

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