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Survivor Sebagai Pelajar Arahan Kendiri

AHMAD ZAMRI MANSOR

Pusat Pengajian Umum

Universiti Kebangsaan Malaysia

43600 Bangi, Selangor, Malaysia

Katakunci:pembelajaran arahan kendiri; kanser payudara; pembelajaran wanita.

ABSTRAK

Kanser payudara ialah penyakit kanser yang paling kerap dihidapi oleh wanita-wanita di Malaysia.

Pembelajaran dan pemahaman tentang penyakit tersebut adalah penting agar wanita tersebut dapat

menangani keadaan krisis yang dihadapi. Pembelajaran arahan kendiri ialah kaedah pembelajaran

yang dapat membantu wanita tersebut dalam mempelajari dan lebih memahami penyakit tersebut.

Kajian ini dipandu oleh soalan-soalan seperti berikut: (1) Apa yang mendorong mereka untuk

belajar? (2) Apa strategi yangmereka gunakan dalam pembelajaran arahan kendiri? (3) Apa

cabaran yang mereka hadapi dalam pembelajaran arahan kendiri? Kajian kualitatif ini

menggunakan kaedah temubual secara mendalam (in-depth interview) dalam meneroka

pengalaman pembelajaran arahan kendiri di kalangan wanita yangmengidap kanser payudara. Data

direcordkan secara verbatim, dan analysis dilakukan dengan menggunakan kod and kategori.

Dapatan kajian ini menunjukkan terdapat tiga kategori yang muncul dalam aspek motivasi iaitu:

keperluan untuk memastikan kesahihan maklumat, keperluan untuk memahami bagaimana untuk

menghadapi penyakit tersebut dan keperluan untuk membantu pembelajaran survivor lain. Untuk

strategi pembelajaran, kategori yang utama ialah: menggunakan bahan bercetak terutamanya buku

dan akhbar, bertanya pada doctor, menggunakan internet, menyertai aktiviti kumpulan sokongan

dan mempelajari daripada pesakit dan survivor lain. Kesan emosi hasil daripada pendedahan

kepada maklumat, kekurangan bahan yang berorientasikan keperluan tempatan dan kebimbangan

terhadap kebolehpercayaan maklumat merupakan kategori yang muncul dalam aspek cabaran

dalam pembelajaran arahan kendiri.


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Survivors As Self-Directed Learners

AHMAD ZAMRI MANSOR

Centre For General Studies

Universiti Kebangsaan Malaysia

43600 Bangi, Selangor, Malaysia

Keywords: self-directed learning; breast cancer; womens learning

ABSTRACT

Breast cancer is the most frequent cancer among Malaysian women. Learning and understanding

the disease is important for the women in order to deal with the crisis situation. Self-directed

learning is a learning mode that can facilitate a woman with breast cancer in learning and

understanding more about the disease. The study is guided by the following research questions: (1)

What motivates them to learn? (2) What are their strategies in their self-directed learning?; and (3)

What are the challenges in their self-directed learning? This qualitative study uses in-depth

interviews to explore self-directed learning experiences of women with breast cancer. Data are

recorded verbatim, and analysis done through the use of codes and categories. Findings shows that

in term of motivation for learning, there were three emerging categories: the need to ascertain

information, the need to understand how to deal with the disease and the need to help others to

learn. For learning strategies, the emerging categories were: utilizing print media, consulting

doctors, utilising internet, joining support group activities and learning from other patients and

survivors. Emotional effect of exposure to information, lack of locally-oriented information and

concern about reliability of information were the emerging themes for challenges in their self-

directed learning.

INTRODUCTION

According to National Cancer Registry Report, in the year 2002 (Lim et al., 2003), a total of 26,089

cancers were diagnosed in Peninsular Malaysia, comprising 11,815 males and 14,274 females. Among all

cancers in females, breast cancer is top of the list. In regards to breast cancer, the issue of education and

learning has been regarded as important in dealing with the situation. Bouchard (1994) categorizes

learning into two: self-directed and other-directed.

Self-directed learning means taking personal responsibility in learning (Brockett and Hiemstra,

1991). The concept of personal responsibility implies the learners role in accepting the responsibility to

undertake the process of learning, which includes planning, implementing and evaluating. The importance


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of self-directed learning for adults is well documented in the literature (Brockett and Hiemstra, 1991;

Brookfield, 1985; Merriam and Caffarella, 1999).

Ragers (2003) study underlines the importance of self-directed learning in breast cancer context.

Diagnosed with breast cancer, the woman left with no choice but to learn in order to survive. Brockett and

Hiemstras (1991) notion of self-directed learning as a matter of survival can appropriately describe the

self-directed learning in the context of personal crisis situation. Despite the richness of literature on self-

directed learning, most of them have not been focusing on self-directed learning in personal crisis

situation, with the exception of Rager (2003), Alexander (1997), and Murphe-Ende (1996).

Previous line of inquiry is developed by Rager (2003) who investigated self-directed learning of

thirteen women with breast cancer in Wichita, Kansas, United States. The study offers an insight into the

phenomenon in a culturally different setting. As the study cannot be generalized into a culturally different

context, an investigation of the phenomenon in Malaysian context is needed. Studies on self-directed

learning in Malaysia have been focusing in non-crisis situation (for example: Abu Daud et al., 1998;

Daing Zaidah and Abu Daud, 2002; Norzaini et al., 2004; Rozhan, 1992).

METHODOLOGY

The purpose of sample selection is not to achieve statistical generalisation, but rather to gain the

perspective of participants (Merriam, 1998; Morse and Richards, 2002). The selection of participants is

therefore based on the potential of each participant to contribute to researchers understanding of the

phenomenon under investigation. In this study, purposive sampling is used. According to Merriam (1998),

the criteria used should reflect the research question and guide in identification of information-rich cases.

The criteria for the selection of participants were being able to fulfill Toughs (1971) criteria of

self-directed learner, female and being able to communicate in English or Bahasa Melayu. Biological

sketch of the participants are as in the following table:

Table 1: Participants Biological Sketch

Participants Age Race Occupation Education

level

Date of

diagnosis

Marital

status

Gina 33 Malay Civil servant Bachelor April 2003 Married

Hanim 37 Malay Housewife Master September

2001

Married

Juriah 52 Malay Civil servant Diploma May 2004 Divorced

Karima 57 Malay Lecturer PhD August1998

Divorced


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Masni 56 Malay Retired

teacher

Bachelor December

2002

Married

Nora 60 Malay Consultant Master June 2004 Married

Puteh 50 Malay Lecturer PhD March

2000

Married

Rina Tan 47 Chinese Editor Bachelor September2005

Married

Swee Lan 45 Chinese Teacher Bachelor April 2006 Married

Thanam 51 Indian Teacher Bachelor August

2001

Married

In-depth interviews were conducted using a tape recorder. The data were then transcribed

verbatim. For the purpose of data analysis, the researcher keeps a research diary, fieldnotes and interview

transcripts in printed and electronic forms. To guard against possible loss of data due to viruses and othercomputer problems, a second electronic copy is kept in researchers external disk. To allow easy retrieval

of documents, all electronic documents are kept in various folders representing different participants.

The next step is to analyse the data. The data analysis strategies used were: (1); coding (2)

concept mapping; and (3) constant comparative method.

FINDINGS

The study is guided by the following research questions: (1) what motivates them to learn? (2) What

strategies they used in their self-directed learning? And (3) what challenges they encountered in their self-directed learning?

Based on the in-depth interviews with ten participants, there were eleven emerging categories and

five sub-categories. The findings are organized according to predetermined themes: motivating factors

(theme 1), strategies in learning (theme 2), and challenges in learning (theme 3). A summary of the

common categories is listed as in the followings:

Table 2 Summary of Emerging Categories

Theme 1: MotivationsThe need to ascertain informationThe need to understand how to deal with the disease

The need to understand how they were affected

The need to know how to copeThe need to know more about the disease

The need to help others to learn


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Theme 2: Learning strategiesPrinted materials

books

newspapers

Consulting doctorsUtilising internet

Joining support group activities

Learning from other patients and survivors

Theme 3: ChallengesEmotional effect of exposure to information

Lack of locally-oriented information

Concern about reliability of information

Their Motivations

The need to ascertain information

The participants learned in order to ascertain the information that she has previously acquired. Whenever

they read new information, they normally consult their doctor in order to ascertain the information. For

example, Gina.

... after the operation, we see the doctor very often and during those times we ask the doctor

whether the information is incorrect or not). (Translated from the original quotation in Bahasa

Melayu) (Quote 1)

The need to deal with disease

The participants also needed to know how they were affected by the disease. For example, Hanim, who

was diagnosed with breast cancer when she was in her third month of pregnancy was quite concerned

about how she and her baby were going to be affected by the chemotherapy treatment.

When I saw my own gynae, as I wanted to know how safe the chemo was for the foetus, and for

the mother, my gynae told me many things, at that time I had not been to surgery yet but I needed

information outside.(Translated from the original quotation in Bahasa Melayu) (Quote 3)

The participants also needed to know how to cope with their disease. For example, Gina searched for

information just to know how she was going to be treated.


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... when I got to know that I had to undergo chemotherapy, I would search for what I should do

during the treatment.) (Translated from the original quotation in Bahasa Melayu) (Quote 5)

Regarding the need to deal with their disease, firstly they need to know what breast cancer really

is. For example, Gina, said

Firstly I needed to know what stage I was in. Secondly, what I should do. Thirdly, I actually

needed to know what I should do in terms of diet, personal healthcare, those were the things I

needed to know, and from there I searched for further information, mostly from internet sources.

(Translated from the original quotation in Bahasa Melayu) (Quote 6).

The Need To Help Other Patients And Survivors To Learn

Hanim felt the need to share knowledge with others in the light of misperception about breast cancer

among her society.

I felt that it is important for me to share knowledge with others. Although you are detected with

breast cancer, it does not mean that you are bedridden or in near-death situation. (Translated from

the original quotation in Bahasa Melayu) (Quote 7)

She also felt that despite her illness, she is thankful to God for being given the opportunity to lead

a new life. As a return she would like to educate others. For Karima, she became reference point for other

survivors. She had been consulted by breast cancer patients and survivors from Malaysia as well as from

overseas. For Puteh, she would like to address educational needs of the marginalised section of women

with breast cancer, particularly the kampong folks. As an academician, at the moment she has been

involved in a research project to facilitate the learning needs of the women.

Their Learning Strategies

Utilizing Print Media

Reading newspapers . Participants look for information about their disease by reading printed materials

such as books, and newspapers. Newspaper is an important source for information about breast cancer for

most of the participants. One reason attributed to this is the wide readership and easy accessibility of

newspapers. Gina, for instance, aware about symptoms of breast cancer through her reading from

newspaper. Apart from breast cancer awareness, participants read newspaper and magazines in order to

get up to date information about latest drug to treat their disease. For instance, Karima said.

Ooh, if there are articles in the newspaper, Im always looking for, if I see it, I will read it,

because I want to make sure that is the latest drug. I will check with Dr Ghani, asking him


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whether I should take this drug). (Translated from the original quotation in Bahasa Melayu)

(Quote 8)

Reading books. Books on breast cancer are important source of learning for most of the participants. The

importance of books can be best described by Noras experience:

when I found out that, I was informed by the doctor, confirmed that its cancer weeks later, so

the first thing I did was to get some books, I went to the bookstore and buy a few books, start

reading on it, then I can focus more on breast cancer. (Quote 9)

The participants got the books from friend, other survivors or bookshops. Nora, Puteh and Swee

Lan had books sent by friend and relatives from overseas. Rina Tan mentioned that when she was

diagnosed with breast cancer, Nora gave her a book on breast cancer and after that, to understand more,

she went to buy more books on breast cancer from a bookshop.

Apart from newspaper and books, magazine was also a source of information. For instance, Rina

Tan narrated that.

it was a coincidence that when I was diagnose, and I was found to have the lump, I was

reading a magazine about breast cancer, that was Jelita magazine, in there it was written You

May Be the Next Victim. I was reading it and at that time, I did not notice that the lump was

there, then I read again what was written in the magazine, about the symptoms, and then what

would be the next actions and all those, those were mentioned in the magazine. (Translated from

the original quotation in Bahasa Melayu) (Quote 10)

Consulting doctors

One of the main strategies used by participants is by consulting doctors. How did they find the doctor.

Participants learning through the doctor is characterised by the followings: they utilised their formal

appointment with the doctor to ask questions; they utilised their family and friendship network in order to

search for the doctor that can be their resource person.

Most of the participants just utilise their appointment with the doctor to ask questions that they

would like to know. Some participants such as Hanim, Karima, Nora and Thanam. Hanim utilised every

opportunity to learn from doctors. She managed to build a good rapport with a doctor which happens to

live next to her house. Karima, Nora and Thanam learned by asking their friends who are doctors. Nora

also have a brother who is a doctor. This is best illustrated by Hanim:

through my brother in law, I got to know a cancer survivor and she also gave me information,

she introduced me a doctor, a specialist at Glen Eagles. So I got a free service from the doctor,


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and he was very nice, so I met him, talked to him and that give me more information because not

many had breast cancer during pregnancy as I did). (Translated from the original quotation in

Bahasa Melayu) (Quote 12)

Utilizing Internet

Participant utilised internet in order to get more information about their disease after the were diagnosed.

All participants got the information through articles in websites, but for Karima, she also learned from

group mailing list. Most of the participants located information by themselves. The exception is Masni

and Swee Lan who were helped by their family members. For Hanim, at first she got her husband to

locate the information and at the same time, she learned how to locate it from him. Now she is able to

locate the information by herself.

How did they search for information? Gina said she just entered kanser dan dia keluar one by

one (I just enter the word kanser, and the information just comes out one by one). This is similar to

what Rina Tan did, Saya pergi dekat Yahoo dan search breast cancer, lepas tu dia keluarlah (I went to

Yahoo website and searched for breast cancer, after that the information just comes out).

Participant learned much from the internet, especially for Hanim, Nora and Puteh. Hanim learned

that having breast cancer during pregnancy is common in the United States, so she did not have to worry.

Puteh, who is also having leukemia, learned that cancer transplant can also cure breast cancer. What Nora

learned is best described by the following:

What I have learned by going through the websites, how common cancer is, the statistics was

shocking to me, when I was informed that in the US we can have one out of every eight patients,

breast cancer patients, a woman, and then in Malaysia, you can talk, if you like, to combine 1 in

ever 19.

Joining Support Group Activities

All participant joined support group activities in order to learn more about how to manage their health

after treatment. Establishment of support groups joined by the participant were the joint effort of

survivors and the hospital. The support group is instrumental in providing platform for survivors and

patients to share and learn each others experience. Juriah acknowledged the importance of having the

activities. She said that the activities are educational and informative Most of other participant regard

support group activities highly. Masni, however, having been exposed with sad news of fellow members

or survivors sometimes made her depressed. However, because the activities are informative, she keeps

on joining the activities.


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What did they learn in support group? According to Juriah, she learned on very specific topic

such as chemotherapy, radiotherapy, menopause, diet, etc. Karima shared her experience about the

decision to go for extensive supplement.

The support group that Rina Tan joined was initiated by the hospital that she received her

treatment. According to Rina Tan, whenever there are new breast cancer patients, they were at lost. The

hospital decided to establish the group in order to help new patients. Rina Tan is acting as the coordinator

for the support group.

Learning From Other Patients And Survivors

Due to their commonness in term of experience, advice from other patients and survivors are regarded as

important. Their experience is useful in handling newly diagnosed patients. Rina Tan narrated that when

she was diagnosed with breast cancer, she cried when the doctor broke the news. The doctor did not know

how to deal with the situation so he asked a survivor who is a staff there to help him to counsel Rina Tan.

There was a staff there, she had been ten years, she had breast cancer ten years ago, she called my

name, I forgot her name, she came to my room, showed me what it looked like if the breast is

removed, she told me that there was nothing, no problem, it does not mean that you are going to

die, so she told me o be positive and to be happy. (Translated from the original quotation in

Bahasa Melayu) (Quote 14)

Participant took the initiative to make contact with other patients and survivors. Hanim, for

instance, build a rapport with a survivor through her brother in law. Puteh also got a lot of advice from

other survivors, especially on side effects of chemotherapy treatment. Swee Lan was very thankful to the

advice given by survivors who came to visit her under a Christian group.

Challenges In Their Self-directed Learning

Participants faced three main challenges in their self directed learning: the emotional effects of exposure

to information, the lack of locally oriented information, and concerns about reliability of information.

Emotional Effects Of Exposure To Information

Gina, in talking about internet pointed out that there are a lot of information available in the internet. She

however cautioned that there are negative side of internet, it gives too much information which makes the

reader worries. For Hanim and Masni, too much information can cause confusion. Hanim however

suggested that if the woman has the knowledge, she is able to distinguish what is right and what is wrong.


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If she got confused, she always referred to the doctor. Puteh was scared to read books about cancer. She

related her experience:

the other day I was reading the book, it says, it will recur, I said, do I want this to happen, you

know, it will come back, you know. It says, oh, it will come back, it will go to your lung and go

to your brain, my God, it tells you. Thats why I was scared to read. (Translated from the original

quotation in Bahasa Melayu) (Quote 15)

Thanam also had experienced the same. At first she thought internet was giving her the hope but

it did not happen that way:

Lack Of Locally Oriented Information

Examples of the problems raised by the participants were the lack of materials that use Bahasa Melayu

and the lack of locally-centred information. Gina complained about the lack of websites that use Bahasa

Melayu. There are local websites but they use English rather than Bahasa Melayu. Most of participants

concerned that the lack of materials in Bahasa Melayu whether in the form of internet or printed materials

deprive their fellow survivors in the rural areas of learning opportunities. About internet, Gina

commented:

In the internet we do not have much of those using Bahasa Melayu, all are in English. There are

local websites, although they are based in Malaysia, there is no Bahasa Melayu there. If there are,

not many. (Quote 17)

In term of the lack of locally oriented information, Karima pointed out that much of the available

information is American-centred. If there are local information, much of the information are on traditional

treatment of cancer.

Concerns About Reliability Of Information

Participants interviewed were concerned about reliability of information. Information from internet, they

were uncertain whether they are right or wrong, at other times they found that information in the internet

are contradictory to what the doctor says.

Regarding the contradictory information, two pf the participants were confused whether they can

take soy bean, milk and red meat. According to Gina;

When we have too much information, for example on diet, we cannot eat this and that, people say

that soy bean is good for survival, but there are those who say otherwise and they also say milk is

also not good, so there are things that we can take and we cannot take but whether the


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information is right or wrong, we are not sure. (Translated from the original quotation in Bahasa

Melayu) (Quote 18)

For her, the best thing to do is to always consult the doctor. If the doctor cannot give his or her

opinion, Gina said that she will have to make her own decision whether to believe or not to believe the

information.

Another problem is regarding those who offer advice. Nora, for instance, cautioned that people

who want to advice others need to have adequate knowledge and the right attitude. She viewed that:

People who do not have enough knowledge to give advice and then these people who do not have

knowledge and do not know enough and when they give advice, is emotional, in the mind they

trying to help, and I always caution people that if you dont have enough, never influence,

(c423n) we can allow them to have certain information but you never push your, your, ooh, you

shouldnt go, thats pushy..

Nora disagreed with certain people who are eager to advice others on breast cancer. They tried to

influence others to follow their advice without realizing that the breast cancer patient needs to make her

own decision without being under the influence of others. The attitude of these people made breast cancer

patients and survivors question reliability of information that they give.

DISCUSSION

Motivations for Learning

Studies by Rager (2003, 2005) indicate that the cancer patients learn because of the need to deal with their

disease. For example Ragers (2003) study of women with breast cancer in Wichita reveal that the

motivations were the need to understand what happens and the need to make informed choice. The

researchers findings, however lead to the need to understand the disease, to know how they were affected

and then how to deal with it. The notable absence is the need to make informed choice. The findings

further support Mok et al (2004) investigation that acquisition of knowledge related to the disease is

crucial in coping with their disease.

The need to help others as found in this study is in tandem with the study of learning of HIV

patients (Baumgartner, 2003; Courtney et al., 2000) which generate the themes that learning as an

opportunity to make meaningful contribution to others and to be of service to others.

Strategies of Self-directed Learning


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Overall findings support Ragers (2003) study. Reading printed materials as indicated in this study is in

line with Mazalan Kamis et als (2005) study of adult learners preferred informal learning activities and

Yahaya and Taranjits (2003) study of source of information about breast cancer among women in

Kuantan.

In coping with life-threatening situation such as in breast cancer situation, the role of trusted

persons are important. In term of learning, the trusted persons are those who have the medical knowledge

to treat their disease, i.e. the doctors. According to Fogarty (1996), perceived credibility of physicians is

an important factor in influencing patients treatment decision-making. In a recent survey of 2,074

respondents conducted by Business Ethic Institute of Malaysia (Rajah, 2006), doctors were voted as the

most trusted professionals. This is comparable to Chengs (1999) study of Chinese women immigrants

with cancer where he found that the respondents delegated selection of treatment to doctors because of

their trust to the doctor.

Regarding internet use, Green and Trevor-Deutsch (2002) observe that only 30% of internet

subscribers in Malaysia were women, and Malaysia women appear to suffer from technophobia. Findings

indicate that this is not the case. Satturland et al.s (2003) findings can best explain this, that the internet

use is higher among the better educated women with breast cancer.

The findings support Humairahs (2006) assertion that support group as a potential source of

information. This also confirms Percy at al.s (1994) contention that self-directed learners tend to be

members of interest group. Regarding learning from individual patients and survivors, the findings

confirms Ragers (2004) theme of sense of connectedness with other people, especially survivors. This

findings supports Brockett and Hiemstras (1991) notion that adult learners look to other learners as

resources.

Challenges in Self-directed Learning

Exposure to information is said to have negative emotional effects on the participants (Guglielmino et al.,

2005; Leydon et al., 2000; Taylor, 2002). The findings is in agreement with Leydon et al.s (2000) study

in which their respondents were found to be fearful to assimilate additional information due to the

influence of mass media, for example the emotive coverage of Linda McCartneys breast cancer

experience.

The lack of locally oriented information confirms the fear of Kreps (2006) and Stavri (2001)

about the dire need to design culturally appropriate educational health material. The findings also

supports Errico and Rowdens (2006) contention that US model of advocacy is not culturally translatable

in other cultures. Manascewicz (2002) highlights the issue of relevance and in Malaysian context, the

findings indicates that some of the information is not contextually relevant.


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The concern about reliability of information is reflected by findings of Leydon et al.s (2000)

study which indicate that contradictory information is a source of concern to cancer patients. In Malaysian

context, most of information, especially those on complementary and alternative medicine is found to be

contradictory to what the doctor has advised.

CONCLUSION

The findings underscores the importance of self-directed learning in understanding more about the

disease, the usefulness of the survivorship experiences by individual survivors and support groups, the

trust that they put in the doctor. The trust that they put in doctors underlines the need for the doctors to

continue their professional duty in professional manner. The trust does not mean that that the women do

not have to learn about their disease anymore as the doctors are there to help them. The challenge of

managing emotion needs to be addressed as it has the potential of disrupting the learning. In regard to

this, the role of cancer support services is of utmost important (Othman and Mazanah, 2005)

IMPLICATION

For breast cancer patients and survivors, the findings underscore the importance of self-directed learning

in understanding how to deal with the disease. To help their fellow patients and survivors, they need to

equip themselves with related knowledge, especially on survivorship. The findings also addresses the

need for newly diagnosed patients to be in connection with support groups and other patients and

survivors. They also need to be made aware of the fact that resources on breast cancer are available from

various resources. In utilizing the resources, it is important for them to check with health professional if

they find that the information confuses them and to identify appropriate and reliable information to be

referred to by fellow patients and survivors.

For health professionals, they task is not also to disseminate useful and contextually relevant

information but also to encourage self-directed learning among breast cancer patients, to recommend

survivors and support group to newly diagnosed patients and to be involved in support group activities.

Policy-makers need to provide conducive environment so that the learners would be able to have

easy access to resources by designing policies that encourage the involvement of health professionals in

the community and facilitating the publication and dissemination of health messages to the public and

encouraging the establishment of support groups.

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