ORIGINAL ARTICLE
DETERMINING THE SPECIFIC LEARNING NEEDS OF WOMEN WITH BREAST
CANCER PRIOR TO DEVELOPING A BREAST CANCER EDUCATION PACKAGE
Raja Lexshimi RG1, Siti Meriam2, Rohaizak M3, Subahan MM2, Nabishah M2
1Department of Nursing, UNIVERSITI KEBANGSAAN MALAYSIA MEDICAL CENTRE. 2Department of Medical Education, UNIVERSITI KEBANGSAAN M’SIA MEDICAL CENTRE. 3Department of Surgery, UNIVERSITI KEBANGSAAN M’SIA MEDICAL CENTRE
ABSTRACT
In Malaysia, breast cancer education materials are scarce and there is an urgent need to develop such materials to impart accurate and reliable breast cancer knowledge. Prior to developing education materials, it is important to determine specific learning needs of women on breast cancer using theInformation Needs Questionnaire (INQ). This study was carried out for the above specific purpose whereby its findings would form the basis for developing breast cancer education materials. It was a descriptive cross-sectional study and 140 women at different trajectory of breast cancer, who sought treatment at Universiti Kebangsaan Malaysia Medical Centre, participated. The specific learning needs of importance were determined by its mean score and the higher the mean, the more important was the particular learning needs item. Specific learning needs with mean scores of between 4.00 and 5.00 were deemed to be very important, scores between 3.00 to 4.00 important and scores less than 3.00 to be less important. Specific learning needs on ‘spread of breast cancer’ received high mean scores ranging between 4.61 to 4.20, followed by ‘breast cancer treatment and side-effects’ (4.70 to 3.85), ‘cure’ (4.72 to 3.66), ‘sexual attractiveness’ (4.46 to 3.45), ‘self-care’ (3.91 to 3.41) and ‘genetic risk’ (3.81 to 3.19). ‘impact on family and friends’ (3.39 to 3.16) and ‘social life’ (3.26 to 2.86) received a range of lower mean scores, denoting its least importance. Women had placed high importance on certain specific learning needs and less importance in others. Despite being identified as being of high importance or low importance, all the specific learning needs had been taken into consideration when developing the breast cancer education package as all the information were important in one way or another. Women also identified that the most preferred choice of receiving information was through a booklet (63.6%). Based on the study findings related to Information Needs Questionnaire and its specific learning needs and preferred method of receiving breast cancer information, a breast cancer education package comprising 17 booklets was developed.
Keywords: breast cancer, information needs, specific learning needs, preferred method of receiving information.
INTRODUCTION
In Malaysia, breast cancer is the most common form of cancer and the main cause of cancer death among women. The incidence of breast cancer is increasing and according to cancer statistics, 1:19 women are said to be at risk of getting breast cancer, irrespective of their ethnicity i.e Malay, Chinese and Indian and socio-demographic characteristics1. Breast cancer is a fatal disease and affects a woman in many ways,
mentally, physically, psychologically, socially and her overall general well-being. A breast cancer diagnosis not only causes fear, grief and apprehension to the women and family, but the breast cancer treatment recommended also affects women’s body image2 and quality of life.
Upon the diagnosis of breast cancer, women are in a vulnerable state, as fear, shock and the emotional turmoil they are in, overrule their state of mind. This prevents them to assimilate and retain any verbal information given by the doctors and nurses3. Furthermore, the fear, grief and apprehension may prevent
women from asking for more information4 as they assume that they would be told all they need to know3.
Moreover, women continue to be vulnerable throughout the treatment and rehabilitation phase and continue to seek all kinds of information, so as to be able to cope and fight the disease effectively.
Patient’s informational need varies throughout the disease trajectory3,5. Health care professionals play a
major role in providing information on breast cancer to women not only upon diagnosis but throughout the women’s cancer trajectory. Information provided by health care providers especially nurses in cancer settings was frequently not found to meet what patients wanted to know6. Doctors and nurses fail to give
appropriate and up to date information because of the lack of time due to the heavy task that they shoulder in their daily routine care to patients. Sufficient and relevant information is important to women with breast cancer both upon diagnosis, during treatment and after treatment, thus confirming the fact that information is important throughout the illness trajectory7,8. Breast cancer patients who were adequately informed
In Malaysia, The Malaysian Clinical Practice Guidelines on Management of Breast Cancer 20109 strongly
recommended the use of education materials to impart breast cancer information. A study by Gopal et al.10
found that women in Malaysia were inadequately informed upon their diagnosis of breast cancer, and had sought for relevant information from a variety of sources, such as magazines, newspapers and friends. However, in Malaysia, education materials written by content experts on breast cancer information are scarce, hence there is an urgent need to develop such materials to impart accurate and reliable breast cancer knowledge.
Prior to the development of breast cancer education materials, it is important to determine the specific learning needs of women that are of importance to them. The study undertaken by Gopal et al.10 had
identified nine information needs of priority among Malaysian women diagnosed with breast cancer, using the breast cancer Information Needs Questionnaire (INQ) similar to the study done by Luker et al.11 and
Degner et al.12 in UK and Canada, respectively. The Information Needs Questionnaire consisted of nine items
of information related to physical, psychological and social care such as ‘cure’, ‘sexual attractiveness’, ‘spread of breast cancer’, ‘types of breast cancer treatment’, ‘treatment side-effects’, ‘genetic risk’, ‘self-care’, ‘social life’ and ‘impact on family and friends’. The nine breast cancer Information Needs items were considered as important breast cancer topics for women with breast cancer. Thus, in the local scenario, the relevant breast cancer Information Needs had been identified but the specific learning needs related to the Information Needs Questionnaire have yet to be determined and studied. Determining the specific learning needs would assist the researcher in the development of education materials for women with breast cancer. Currently, there is little literature on the specific learning needs of women related to breast cancer Information Needs Questionnaire.
MATERIALS AND METHODS
This cross-sectional study was undertaken to determine the specific learning needs of women with breast cancer in relation to the breast cancer Information Needs Questionnaire and the preferred method of receiving breast cancer information. Hospital Universiti Kebangsaan Malaysia Medical Centre (UKMMC) was chosen as the research setting as UKMMC is a well known tertiary hospital and a referral centre for cancer treatment. Women who sought breast cancer treatment in UKMMC came from all walks of life and comprised mainly the three ethnic groups, Malay, Chinese and Indian. Women with breast cancer who were undergoing breast cancer treatment and attending follow up care in any of the breast surgery clinic or Oncology breast clinic and who fit into the inclusion criteria were recruited into the study using a purposive sampling method. The inclusion criteria were women between 29and 65 years of age, had been diagnosed with breast cancer 3 months and above at UKMMC and had received surgery and more than one type of adjuvant therapy.
Data were collected using a structured self-administered questionnaire. The breast cancer specific learning needs questions were developed based on the Information Needs Questionnaire (INQ) of women with breast cancer10,11,12 by local content experts in the field of cancer, the researcher and through intensive literature
search from previous studies. The INQ consisted of nine information needs, however, for this study, it consisted of only eight because the two information needs “types of breast cancer treatment” and “treatment side-effects” were merged as one. For each of the breast cancer Information Needs, specific learning needs were developed and tested for their importance and these include information on ‘Cure’ (9 items), ‘Sexual attractiveness’ (12 items), ‘Spread of breast cancer’ (9 items), ‘Breast cancer treatment and side-effects’ comprising “Types of treatment and Aim” (2 items), ‘Surgery’ (6 items), ‘Chemotherapy’ (8 items), ‘Radiotherapy’ (8 items) and ‘Targeted therapy’ (8 items), ‘Genetic risk’ (11 items), ‘Self-care’ (4 items), ‘Social life’ ( 8 items) and ‘Impact on family & friends’ (9 items). The specific learning needs questions were developed by incorporating the theoretical framework of the Health Belief Model (HBM) domains: Perceived susceptibility, Perceived severity, Perceived benefits, Perceived barriers, Cue to actions and Self efficacy13. The questionnaire was prepared in dual language, i.e English and Malay languages and
women were given the choice in answering the questionnaire in the language they preferred.
Validity and reliability of the questionnaire were established prior to its use. Face validity was established through a group of nurses who read and found it appropriate for use. Content validity was determined through a pilot study that was performed on 15 women with breast cancer. The women were asked to read all the items in the questionnaire and give comments related to the difficulties in understanding the items. The 15 women and their study findings were excluded from the actual study. Reliability of the questionnaire was determined by measuring the internal consistency of the instrument using the cronbach alpha. Cronbach alpha reading was 0.886 indicating that it was a reliable instrument to measure the women’s specific learning needs related to the eight information needs of women with breast cancer.
learning need items above 4.00 were considered as ‘very important’, mean scores between 3.00 and 4.00 as ‘important’ and mean scores below 3.00 as ‘less important’. At the end of the questionnaire, women were asked to identify their most preferred choice in receiving breast cancer information from a total of seven types of methods of receiving information.
Data Analysis
Data were analysed using SPSS version 22.0. The importance of the specific learning needs was measured descriptively where the mean and standard deviation (±) were identified. The level of importance of the specific learning needs was determined by the highest mean score. The preferred method of receiving breast cancer information was analysed by frequency.
RESULTS
A total of 140 women with breast cancer participated in this study and their age ranged from 29 to 64 years. The mean age was 49.19 (±8.709). Duration of illness ranged from 6 months to 4 years. Table 1 presents the demographic data of respondents.
Table 1. Socio-demographic data of respondents (n=140).
_____________________________________________________________________
Variable Frequency Percentage Mean Std. Deviation
(n) (%) (±) Age(29 to 64 years) 49.19 ±8.709
<50 80 57.1
>50 60 42.9
Ethnicity
Malay 81 57.9
Chinese 41 29.2
Indian 18 12.9
Married Status
Single 21 15.0
Marrried 94 67.1
Divorced/Widowed 25 17.9
Educational level 51 36.4
Higher education 89 63.6 Secondary
Occupation
Working 83 59.3 Non working 57 40.7
Treatment received
Treatment 1
(Surgery & < than 3 adjuvant) 95 67.9
Treatment 2 45 32.1
(Surgery & > than 3 adjuvant)
Duration of Illness 2.54 ±1.115
< than 1 year 31 22.1 > than 1 to 2 years 40 28.7 > than 2 to 3 years 31 22.1 > than 3 to 4 years 38 27.1
(4.52±0.651),“effects of spread of breast cancer” (4.51±0.694), “how breast cancer spreads” (4.46±0.605), “meaning of axillary clearance” (4.46±0.672) and “meaning of metastasis” (4.46±0.682) were all very important to them. The findings clearly showed that the women wanted to be informed of every aspect of spread of breast cancer, without exception.
The next important type of information was on ‘breast cancer treatment and side-effects’. “Types of breast cancer treatment” (4.46±0.651) and “aim of breast cancer treatment” 4.53(±0.704) scored a high mean of above 4.00. Altogether, there were 38 specific learning needs items for five (5) types of breast cancer treatment: Breast surgery (6), Chemotherapy (9), Radiotherapy (8), Hormonal therapy (8) and Targeted therapy (8). With the exception of one learning need item, “removal of lymph nodes” (3.84±0.895) in breast surgery treatment, all other 38 specific learning needs items were considered as very important with the mean score margins between 4.70 and 4.04 (as shown in Table 2).
Of the five (5) types of treatment, “chemotherapy and side-effects” had been considered as the most important. Specific learning needs items on “chemotherapy side-effects” and “how to manage chemotherapy side-effects” (4.70±0.466), respectively had the highest mean score followed by “when chemotherapy is given” (4.61±0.579), “how chemotherapy is given” (4.55±0.499), ‘what is chemotherapy” (4.52±0.529) and “duration of chemotherapy” (4.51±0.502), and the least being “how much does chemotherapy cost” (4.33±0.471), “aim of chemotherapy” (4.23±0.639) and “name of chemotherapy drugs” (4.18±0.615).
Specific learning needs on radiotherapy, hormonal therapy, targeted therapy and their side-effects with mean scores of between 4.69 and 4.18, 4.68 and 4.19 and 4.67 and 4.16, respectively had also been considered as very important to the women. While “how” and “when its treatment is given” and “its duration” remained to be very important specific learning needs, aspects on side-effects and “how to manage these side-effects” were more important, as indicated by the highest mean scores: 4.69±0.463 (radiotherapy), 4.68±0.469 (hormonal therapy) and 4.67±0.471 (targeted therapy).
Five items in ‘breast surgery’ were perceived to be very important as they all had a mean score of above 4.00. The specific learning needs on “what is mastectomy” had the highest mean score (4.69 ±.779) followed by “aim of breast cancer surgery” (4.53±.704), “types of surgery” (4.53±0.751) and “types of breast cancer treatment” (4.48±0.772), “what is wide local excision” (4.36±.702) and “what is lumpectomy” (4.31±.667). One item i.e “removal of lymph nodes” had a lower mean score of (3.84±.895) but was still considered important by the women.
Information on ‘cure’ consisted of 13 specific learning needs and a total of eleven (11) items were considered as very important with mean scores above 4.00 (as shown in Table 2). The item “stage of breast cancer” (4.72±0.510) had the highest mean followed by “benefits of early treatment” (4.69±0.551), and “importance of early diagnosis” (4.66±0.595). These were followed by “size of breast tumor” (4.63±0.580), “benefits of hospital treatment” (4.59±0.610), “effect of late treatment” (4.56±0.614), “importance on complying to breast cancer treatment” (4.50±0.652), “early decision making for surgery” (4.49±0.662) and “completing all breast cancer treatment” (4.46±0.651). Of lesser importance were “effect of alternative treatment” (3.79±0.791) and “meaning of cure” (3.66±0.632).
There are 12 specific learning needs items on ‘sexual attractiveness’ and the mean scores ranged from 4.46 to 3.45 (Table 2). Four of the items were considered very important, three of which are “meaning of sexual attractiveness” (4.46±0.651) followed by “breast saving surgery” (4.39± ±0.775) and “breast reconstruction surgery” (4.30±0.820). The fourth item, “impact of breast cancer treatment on body image” which had a mean score of 4.01 (±0.699) consisted of further sub items of which three were considered as very important: “loss of breast” (4.32±0.498), “hair loss” (4.21±0.673) and “changed appearance” (4.16±0.644). Of lesser important were “sexual life” (3.99±0.689), “menopause” (3.93±0.854) and “sexual confidence” (3.79±0.744). The least important of all the learning needs were “fertility problems” (3.54±0.970) and “inability to provide sexual needs” (3.45±0.900).
Information on ‘self care’ had 14 specific learning needs item and all were deemed to be in the category of important only (mean score of 3.91 to 3.41). Ranging in importance are “importance of good nutrition” (3.91±.662), “importance of exercise” (3.87±.548), “importance of rest and good sleep” (3.87±.598) “importance of outdoor activities” (3.86±.641) and “importance of accepting diagnosis” (3.85±.574). Other items such as “looking forward in life” (3.84±.566), “importance of good self esteem” (3.83±.575), “importance of being happy” (3.83±.522), “importance of having positive outlook in life” (3.81±.583) were also deemed to be of importance. Learning needs related to “what is self care”, its “aim”, “types of self-care activities” and “its benefits” (3.41±.523) were of lesser importance.
the highest mean score followed by “whether the breast cancer genes can spread to my daughters” (3.79±.632) and “how did I acquire the breast cancer genes” (3.61±.607). Of lesser importance than the above three were “types of breast cancer genes”, test for breast cancer genes and meaning of genes (3.60 to 3.00). The least important of the 11 specific learning needs were related to “benefits of genetic testing”, “where to go for genetic testing”, “its cost” and “about tumor markers” where the means ranged from 3.34 to 3.21. The findings clearly showed that understanding “what genetic risk is” and “whether the genes could spread to their daughters” were items most important to them.
The last two types of information needs considered to be of lesser importance were ‘impact on family and friends’ and ‘social life’. All the nine specific learning needs listed in ‘impact on family and friends’ were considered as important with mean scores between 3.39 and 3.16 (Table 2), the most important being “how my family members can support me” (3.39±0.517) and “how friends can support me” (3.39±0.490). These were closely followed by “how to break news to my child” (3.37±0.528), “impact on my children” (3.35±0.528), “impact on my family members” (3.32±0.591) and lastly “impact on friends” (3.31±0.551). The least important of the nine items was “impact on my husband” (3.16±0.712). The findings clearly showed the importance of family and friends and of the support they could get from them.
Table 2. Mean Scores of Specific Learning Needs Related to Information Needs Questionnaire (n=140).
__________________________________________________________________________________ Information Needs Specific Learning Needs Mean Scores (Range) Importance
__________________ ___________________ (No of Items) Highest Lowest
Spread of breast cancer 9 items 4.61±0.620 4.20±0.671 Very Important Breast cancer treatment
and Side-effects
Types 1 item 4.46±0.651 - Very Important Aim 1 item 4.53±0.704 - Very Important
Breast surgery 6 items 4.54±0.593 3.84±0.895 Very Important & Important Chemotherapy 9 items 4.70±0.460 4.18±0.615 Very Important
Radiotherapy 8 items 4.69±0.463 4.18±0.615 Very Important Hormonal therapy 8 items 4.68±0.469 4.19±0.607 Very Important Targeted therapy 8 items 4.67±0.471 4.16±0.607 Very Important
Cure 13 items 4.69±0.551 3.66±0.632 Very Important & Important Sexual Attractiveness 12 items 4.46±0.651 3.45±0.900 Very Important & Important Genetic Risk 11 items 3.81±0.548 3.19±0.698 Important
Self care 14 items 3.91±0.662 3.41±0.523 Important Impact on family &
friends 9 items 3.39±0.490 3.16±0.712 Important
Social life 8 items 3.26±0.607 2.86±0.819 Important & Less Important Scores>4.00= Very Important, 4.00 to 3.00= Important, <3.00= Less Important
‘Social life’ being the last among the eight information needs consisted of eight specific learning needs ranging in mean scores between 3.26 and 2.86 (Table 2). Four specific learning needs were considered as important: “whether I can continue with my favourite activities” (3.26±0.607), “how can I enjoy my life” (3.19±0.776), “whether life is worth living” (3.13±0.835) and ‘whether social life is going to be challenging” (3.01±0.835). Other four less important items obtained mean scores between 2.98 to 2.86 which were concerned with the “meaning of social life”, “types of social activities” and “social life after breast cancer”.
On the question of the preferred choice of receiving breast cancer information, the women's most preferred choice were booklets (63.6%), followed by social support (20.0%) and leaflet (6.4%) (Table 3). Other methods such as internet (5.0%), video (2.9%), DVD (1.4%) and audio (0.7%) were found to be of less preference.
DISCUSSION
The results of the study showed that the nine specific learning needs related to spread of breast cancer as topmost important. Findings showed that the women wanted to be informed of every aspect of the spread of breast cancer. Two important indicators could attribute to this finding: The fact that breast cancer is the leading cause of cancer mortality among Malaysian women14 and the fact that most women in this study
presented themselves in stage 3 or 4, leading to poor prognosis15. The findings may reflect women having
the experience where their breast cancer could have spread to other organs such as lungs, bones, liver and brain or they may have the experience of seeing their friends dying after being diagnosed with stage 4 breast cancer. These findings have been supported by Li et al.8, Beaver & Booth16,Yi et al.17, where women in
Specific learning needs on treatment and side-effects were found to be the second most important after spread of breast cancer. This is congruent with the studies done by Morrison et al.18 and Al Qadir19 where,
respectively information needs about treatment and side-effects topped the list of unmet needs and where women upon diagnosis of breast cancer wanted to know detailed information on treatment and treatment side-effects. Fragerlin et al.20 believed that understanding the types of treatment and side-effects would
assist women in making informed decision in breast cancer treatment.
Table 3. Preferred Method of Receiving Breast Cancer Information (n=140).
Most Preferred Method Frequency Percentage
Booklet 89 63.6
Leaflet 9 6.4
Website 7 5.0
Video 4 2.9
DVD 2 1.4
Audio 1 0 7
Support Group 28 20.0
Among the five breast cancer treatment, specific learning needs on chemotherapy were listed as the most important, followed by radiotherapy, hormonal, surgery, targeted therapy and surgery. The findings clearly showed that everything to do with “how and when chemotherapy should be given”, “duration of chemotherapy”, “its side-effects” and “how to manage them” were of utmost importance to the women, irrespective of the “name of chemotherapy” or “its cost”. Chemotherapy is usually given in an outpatient ambulatory setting, therefore, the need for information on every aspect of chemotherapy is of utmost importance21,22. The fact that the effects of chemotherapy side-effects such as neutropenia or
thrombocytopenia, nausea, vomiting, fatigue, stomatitis and anorexia could be overwhelming for the patients, and the fact that patients may not be able to perform self-care activities to manage these side-effects, providing accurate and relevant information is very important21. Chemotherapy has been the
standard treatment after surgery but is sometimes given prior to surgery, which is known as neo-adjuvant. Neo-adjuvant chemotherapy is commonly given to shrink large breast tumors as in locally advanced or metastatic breast cancers. Even in moderate size breast cancer, neo-adjuvant chemotherapy is given first followed by surgery such as wide local excision in order to save the women’s breast. This information may be important to women who may want to save their breast as much as possible23. Understanding the
side-effects of breast cancer treatment and how to manage them may help women cope with the situation, when it arises. The side-effects of breast cancer treatment are a major concern to most women as they not only have to experience loss of breast but also hair loss which affect their body image15 and also fertility problems 23.
Besides ‘chemotherapy’, specific learning needs for ‘radiotherapy’, ‘hormonal therapy’, and ‘targeted therapy’ are high (mean>4.00) as such, considered to be very important. Specific learning needs for ‘surgery’ could have been considered as very important with the exception of one item “removal of nodes” which scored a mean of 3.84 but approximately close to 4.00. This places the ‘importance of radiotherapy learning needs’ as similar to that of chemotherapy. The specific learning needs on radiotherapy are important for women as they may help the women to understand radiotherapy better and avoid defaulting radiotherapy treatment24.
In ‘breast surgery’, the need to know about “mastectomy”, “wide local excision” and “lumpectomy” was of great importance (mean 4.69). Surgery is the main breast cancer treatment and women upon diagnosis were told that they have to undergo surgery to remove part of the breast or the whole breast. Women would prefer to save their breast and many wanted to know if it could be done as in the past women had no choice but to opt for mastectomy. However, recent development in breast surgery has resulted in many women being able to save their breast through wide local excision surgery resulting in satisfaction in body image. Immediate or delayed breast reconstruction is also being offered to reduce the impact of mastectomy on body image. Immediate breast reconstruction can help women feel genuine again and reduce the negative impact on body image15. Moreover, there are women who prefer to have their breast removed and some
may not. In either case, sufficient information is required to minimize or not to regret the negative consequences associated with the chosen treatment25. It could be for these reasons that women consider
learning needs on breast surgery very important.
Hormonal therapy being an adjuvant treatment has increased breast cancer survival to a great extent26. It
Women need to be educated on ‘targeted therapy’ as some women have HER2 positive type of breast cancer. For HER2 type of breast cancer, targeted therapy is strongly recommended as it reduces mortality and increases the survival rate of many women with breast cancer28. It has also been commonly reported that
targeted therapy has been associated with cardiovascular effects, which is higher than the risk of cancer recurrence. Its use is gradually increasing therefore, targeted therapy side-effects particularly concerning cardiovascular system have been highlighted by many studies28.
Whether the treatment be chemotherapy, radiotherapy, hormonal or targeted therapy, it can be concluded that many patients need “detailed information” about their illness and its treatment while some patients want minimal information25. According to most studies, most women wanted as much information as
possible25,29,30. Reasons for wanting information is to gain a sense of control, reduce anxiety and change
lifestyle behaviour.
Most of the specific learning needs on ‘Cure in breast cancer’ were very important to the women. This could be due to the awareness among many women that breast cancer is not a curable disease31 which is often
referred to as a life threatening disease. Women fear and worry about the future on how the cancer is going to affect their quality of life32. Information on cure is very important for Malaysian women with breast
cancer as generally, the five year survival rate among Malaysian women is low compared to the survival rate of women in other countries. “Stage of breast cancer” was identified as a very important specific learning need because women wanted to know the severity of their breast cancer. The results indicate that it is important to educate the women on the stage of their breast cancer as many Malaysian women present at late stages i.e stage 3 and 4 compared to women in Singapore and western countries 33,34,15,35. Presenting at
late stages has resulted many to undergo mastectomy, where the breast cannot be saved and also has led to poor prognosis.
Specific learning needs related to the “benefits of early treatment” and “early diagnosis” were very important. This could be due to the fact that many Malaysian women delayed their presentation till late stage. Delayed presentation is still very common in Malaysia as many women have poor knowledge on breast cancer disease and have strong belief in alternative medicine34,36,37. The problem with late diagnosis has
been widely reported in Malaysia34,38,39.While early treatment can lead to improved survival rate 40,41, delay
in presentation can be the main cause for women to succumb to early death thus contributing to the low survival rate in Malaysia. Therefore, the specific learning needs on “importance of early diagnosis” were identified as very important as it had been reported that delay is preventable40.
Women found the item on the “use of complementary alternative medicine (CAM)” less important compared to other specific learning needs in ‘cure’. This could be that they were either not interested on CAM or they already had sufficient information about CAM. However, it has been reported that Malaysian women use CAM to improve their survival rate despite having little evidence of its efficacy and benefits15,42. Studies
have shown that the use of CAM is a common practice among Malaysian women with breast cancer 42,43,44.
The use of CAM to cure breast cancer and to avoid mastectomy was one of the reasons why women defaulted breast cancer treatment or presented late. Women who opted for CAM were the ones who usually defaulted conventional breast cancer treatment42.
Most specific learning needs items on ‘sexual attractiveness’ were considered to be very important. Women wanted to know more about the impact of breast cancer treatment on “body image”, “loss of breast”, “hair loss” and “changed appearance”. In view of these, women wanted information on “breast saving surgery” and “breast reconstruction surgery”. Breast cancer affects women’s body image, femininity and sexual function45. It has been reported that dissatisfaction with body image has been associated with type of
surgery and hair loss due to chemotherapy. Studies have shown that mastectomy does result in dissatisfaction on body image more than those who have undergone breast cancer treatment46,47. Studies
have also shown that the better one’s body image, the better women cope with breast cancer as it gives them a higher level of self confidence48,49,50.
The results for ‘genetic risk’ showed clearly that “What is genetic risk?” posed as the most important specific learning need for the women. The reason would simply be that they did not know what genes and genetic risk meant, and that if they had cancer of the breast, how this would affect their daughters. Women with a family history of breast cancer do get worried about the level of cancer risk to their daughters52. It is
important to provide genetic risk counselling and offer risk management strategies. By providing accurate and reliable information about their breast cancer risk, some of the worries may be alleviated52.
Specific learning needs on the ‘impact of breast cancer on family and friends’ were considered by the women as the second least important, while still maintaining its importance (mean>3.00). The findings clearly showed that the support of both family (women’s husband or partner, adult children, siblings and parents) and friends (those who gave support when in need) were of utmost importance. This is because breast cancer diagnosis and treatment were found to be very stressful for many women, and that nearly 30% of those who survived breast cancer or any other cancers were reported to have some sort of psychological problems53. Kotkamp –Mothes et al.54 found that family members played an important role in the care of
family members with cancer both physically and emotionally. Furthermore, decisions about treatment and care were not often made by the woman with breast cancer alone but as a family55. In this study, close
friends were considered as important as the family and would experience similar levels of distress as the patients themselves.
Despite the specific learning needs on ‘social life’ being rated as the least important, they are important in helping women to forget about their breast cancer and enjoy life as before. Indeed, the specific learning needs on social life may even help women adjust effectively to the breast cancer diagnosis. Studies have shown that social life in women with breast cancer has positive effects on their well-being, mood disturbance and relationships with others56,57. In the study of Wallberg et al.58, information on social life
was also significantly less important compared to other information needs, but on the whole, the importance of the specific learning needs varied from women to women.
Lastly, the study showed that the most preferred method to deliver breast cancer information to women was through booklet. The overwhelming choice for the booklet (63.6%) over social support (20%) and leaflet (6.4%), had become the basis for the development of the breast cancer education package, which is the major focus of this study. Of notable importance was the choice for leaflet. Essentially leaflets are “printed materials containing information” which if given a cover would become a booklet hence, the reason why they chose a leaflet.
The findings clearly showed the importance of written/printed materials, as the choice for receiving information. Not only are booklets user friendly, they also contain authentic and important information about breast cancer, its treatment, side-effects, symptoms management and other available supportive services, and, as suggested by Al Qadire19, it is the most convenient and cheapest way of receiving
information and comes in handy for women who want a quick reference.
CONCLUSION
This study has shown that in relation to the information needs questionnaire, women with breast cancer had high learning needs, the most important being specific learning needs related to spread of breast cancer, followed by treatment and side-effects, cure, sexual attractiveness, self care, genetic risk, impact on family and friends and social life as the least important. This order of importance may vary from country to country which could be due mainly to cultural differences or educational status among women or even women’s personality.
The study has also shown that the most preferred method of delivering the breast cancer information to women is via the booklet. Based on the study findings related to the information needs questionnaire and its specific learning needs and the preferred method of receiving breast cancer information among women diagnosed with breast cancer at Universiti Kebangsaan Malaysia Medical Centre (UKMMC), a breast cancer education package comprising 17 booklets was developed.
REFERENCES
1.
National Cancer Registry. Ministry of Health Malaysia, Malaysian Cancer Statistics – Data and Figure Peninsular Malaysia 2007. National Cancer Registry (NSR), 2007.3.
Luker KA, Beaver K, Leinster SJ, Owens RG.Information needs and source of information for women with breast cancer: a follow-up study.J. Adv Nursing. 1996; 23(3) 487-495.4.
Leydon GM, Boulton M, Moynihan C, Mossman J, Boudioni M & McPherson K. Cancer patients’information needs and information seeking behaviour: in- depth interview study. British Medical Journal 2000;1:320, 909-913.5.
Harris DM, Miller JED, Davis DM. Racial differences in breast cancer screening, knowledge and compliance. J Nat Med Assoc 2003; 95: 693-701.6.
Park BW, Hwang SY. Unmet needs of breast cancer patients relative to survival duration. Yonsei Med J 2012; 53:118–125.7.
Rehnberg G, Absetz P, Aro AR. Women's satisfaction with information at breast biopsy in breast cancer screening. Patient Educ Couns 2001; 42:1–8.8.
Li PWC, So WKW, Fong DYT, Lui LYY, Lo JCK & Lau SF. The Information Needs of Breast Cancer Patients in Hong Kong and Their Levels of Satisfaction with the Provision of Information. Lippincott Williams & Wilkins 2011; 34(1): 49-57.9.
Management of Breast Cancer: Clinical Practice Guidelines. Ministry of Health Malaysia; Academy of Medicine Malaysia at www.academ.org.my The Malaysian Clinical Practice Guidelines onManagement of Breast Cancer 2010.
10.
Gopal RL, Beaver K, Barnett T, Nik Ismail NS. A Comparison of the Information needs of Women Newly Diagnosed With Breast Cancer in Malaysia and the United Kingdom. Cancer Nursing 2005; 28:2.11.
Luker KA, Beaver K, Leinster SJ, Owens RG, Degner LF, Sloan JA. The Information needs of women newly diagnosed with breast cancer. J Adv Nurs 1995: 22(1): 134-141.12.
Degner LF, Kristjanson LJ, Bowman D et al. Information needs and decisional preferences in women with breast cancer. JAMA 1997: 277;1485-1492.13.
Glanz K , Rimer B, & Lewis FM. Health Behaviour and Health Education, 3rd ed. San Francisco:Jossey –Bass. 2002.
14.
Bachok Norsaadah, Mohd Amin Rahmah, Krishna Gopal Rampal, Aishah Knight Understanding barriers to Malaysian Women with Breast Cancer Seeking Help. Asian Pacific J cancer Prev 2012;13: 3723-3730.15.
Yip CH, Bhoo Pathy N, Teo SH. A Review of Breast Cancer Research In Malaysia. Med J Malaysia. 2014; 69 :(A).16.
Beaver K & Booth K. Information Needs and Decision – Making Preferences: Comparing Findings for Gynaecological, Breast and Colorectal Cancer. Cancer Nursing 2007; 13:90-94.17.
Yi M, Cho J, Noh D-Y, Song M-R, Lee J-L & Juon H-S. Informational needs of Korean women with breast cancer: cross-cultural adaptation of the Toronto informational needs questionnaire of breast cancer. Asian Nursing Research 2007; 1:3,76–186. Retrieved fromhttp://www.sciencedirect.com/science/article/pii/S197613170860020
18.
Morrison V, Henderson BJ, Zinovieff F, Davies G, Cartmell R, Hall A, et al. Common, Important, and Unmet needs of cancer outpatients. European Journal of Oncology Nursing 2012;16: 115-123.19.
Al Qadire M, Jordanian cancer patients’ information needs and information-seeking behaviour: A descriptive study. European Journal of Oncology Nursing 201 doi:10.1016/j.ejon.2013.09.007.21.
Williams SA & Schreier AM. The effect of education on managing side-effects in women receiving chemotherapy for the treatment of breast cancer. Oncology Nursing Forum 2004; 31, Online Exclusive: E16-23.22.
Cowan C & Hoskins R. Information preferences of women receiving chemotherapy for breast cancer. European Journal of Cancer Care 2007; 16: 543-550.23.
Wilmoth MC. The aftermath of breast cancer. An altered sexual self. Cancer Nursing 2001; 24: 278-286.24.
Zissiadis Y, Provis A, Harper E, Kearney E, McDonald L, DhaliwalS. Patient satisfaction in radiation oncology. Australasian Radiology 2006; 50: 455-462.25.
Tsuchiya M. An Exploration Of Unmet Information Needs Among Breast Cancer Patients in Japan a Qualitative Study. European Journal of Cancer Care 2009; 18:149-155.26.
Weaver EK, Camacho FMS, Hwang W, Anderson R, Kimmick G. Adherence to Adjuvant Hormonal Therapy and its Relationship to Breast Cancer Recurrence and Survival among low-income women.Am J Clin Oncol 2013; 36(2): 181-7.
27.
Frank SJ, David, Vance ED, Triebel LK, Meneses MK, Cognitive Deficits in Breast cancer survivors after chemotherapy and Hormonal therapy. Journal of Neuroscience Nursing 2015; 47(6):302-12.28.
Maurea N, Coppola C, Ragone G, Frasci G, Bonelli A, Rameno C et al. Women survive breast cancer but fall victim to heart failure: the shadows and lights of targeted therapy. J Cardiovasc Med (Hagerstown) 2010; 11(12):861-8.29.
O'Leary KA, Estabrooks CA, Olson K, Cumming C. Information acquisition for women facing surgical treatment for breast cancer: influencing factors and selected outcomes. Patient EducCouns 2007; 69(1–3):5–19.30.
Liao MN, Chen SC, Chen SC, Lin, YC, Hsu YH, Hung HC, Wang CH et al. Changes and Predictors of Unmet Supportive Care Needs in Taiwanese Women with Newly Diagnosed Breast Cancer. Oncology Nursing Forum 2012 ; 39:5, E380–E389.31.
Jenkins V, Fallowfield L, Saul J, Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 2001; 84:48-51.32.
Hagerty RG, Butow PN, Ellis PM, Lobb EA, Pandelbury SC, Maclead C, Tattersall MH. Communicating with realism and hope: Incurable cancer patients views on the disclosure of prognosis. J. Clin Oncol2005. 20:23(6) 1278-88.
33.
Yip CH, Ng EH. Breast cancer – a comparative study between Malaysian and Singaporean women.Singapore Med J 1996; 37(3): 264-7.
34.
Yip CH, Ibrahim M. Epidemiology of breast cancer in Malaysia. Asian Pac J. Cancer Prev 2006; 7: Pg7.35.
Saxena N, Hartman M, Bhoo-Pathy N, Lim JN, Aw TC, Iau P, Taib NA, Lee Sc, Yip CH, Verkooijen HM Breast cancer in South East Asia: comparison of presentation and outcome between a middle income and a high income country. World J Surg 2012; 36(12): 2838-46.36.
Hisham AN, Yip CH. Spectrum of breast cancer in Malaysian women: Overview. World J.Surg 2003; 27(8):921-3.37.
Taib NA, Akmal M, Mohamad I, Yip CH Improvement in survival of breast cancer patients –Trends over two time periods in a single institution in an Asia Pacific country, Malaysia. Asian Pac J CancerPrev. 2011; 12(2):345-9.
38.
Agarwal G, Ramakant P, Forgach ER, Rendon JC, Chaparro JM, Basurto CS, Margaritoni M. Breast cancer care in developing Countries. World J Surg 2009; 33: 2069-76.40.
Bachok Norsa’adah, Krishna, G Rampal, Mohd A Rahmah, Nyi N Naing, Biswa M Biswal, Diagnosis delay of breast cancer and its associated factors in Malaysian women, BMCCancer 2011;11:14.
