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. 2016 Apr-Jun;3(2):157–169. doi: 10.4103/2347-5625.162826

Table 1.

Summary of cancer support group studies in Asian cancer patients

Reference and country Study design sample (n) declined/dropout rate Cancer type/ethnicity/gender Intervention/duration Measures Results Discussion Limitation
Japan, 1996[31] RCT: Pilot study with pre- and post-test
Total: 20→17
Individual intervention: 9
Group intervention: 80% and 15%
100% BC Japanese women Program includes psycho-education, problem solving, psychological support, relaxation training, and guided imagery
Once weekly, 1 h sessions over 5 weeks
POMS DWI The group intervention was as effective as individual therapy
Overall, intervention was effective in decreasing negative emotions, particularly depression, fatigue, tension-anxiety, and TMDs. However, it did not change coping styles
Subjects receiving individual intervention were also interested in the group session Subjects in the group intervention were hesitant to talk in the earlier sessions
Improved psychological distress due to expression of anticipation and fear
Less effective in changing coping styles b/c
Program did not focus on it
Culture difference of “coping”
Coping is learned throughout life
Changes in coping style is greatest in longer follow-up
People in individual intervention wanted to share experience. People in group intervention felt satisfied with communication, comfortable to criticize doctor, hesitant to talk at first, and wanted to talk individually about private matters
No CG. Should follow longer for long term effect and collect patient’s impressions
Japan, 2000[32] QE: Single group pre- and post-test
Total: 57→40 NR% and 34%
100% BC Japanese women Program includes: Psycho-education, problem-solving, psychological support, relaxation training, and guided imagery
Five 90 min sessions over an unspecified period of time
POMS Overall, structure group intervention was effective in decreasing negative emotions, particularly depression, lack-of-vigor, tension-anxiety, confusion, and TMDs Short-term emotional discomfort alleviation due to patients speaking about their sufferings, their mutual understanding of their problems, and mutual psychological support
Intervention was shown to be meaningful for the cancer patient in supplying a SS/network
No CG
Japan, 2000[24] QE: Single group pre-, post-intervention, and 6 months after intervention test
Total: 57→47 NR% and 18%
100% BC Japanese gender NR Program includes: Psycho-education, problem-solving, psychological support, relaxation training, and guided imagery
Once weekly, 90 min sessions over 5 weeks period of time
POMS Effectiveness of a structured group intervention program persistent for 6 months for patients who had no psychiatric diagnoses at entry
Additional intervention was needed for patients with psychiatric diagnosis at entry
Intervention has long term effects
Effect due to patients’ verbalization and mutual understanding of their suffering problems, and also by offering mutual support
Intervention was shown to be meaningful for the cancer patient in supplying a SS/network
Not for those with adjustment disorders at entry. Need other intervention in addition (individual psychotherapy)
No CG
Japan, 2000[29] QE: Two phases
1st phase: Pilot Western intervention model
2nd phase: Evaluate revised intervention
1st phase Total: 10→7 74% and 30%
2nd phase Total: 44→44 0% and 0%
Both phases used 100% BC Japanese women Fawzy and Fawzy (1994) intervention includes health education, coping-skills training, stress management, and psychosocial support
Once weekly, 1.5-h sessions for 6 weeks
1st phase: Survey response to the intervention
2nd phase: Survey response to the intervention and satisfaction measured with Visual Analog Scale
1st phase: Patients (60%) reported intervention including statistical medical information was inappropriate
Majority of patients (70%) avoided discussion of sexual matters and time to relax in beginning of group. Also, 50% of patients receives support from sister or daughter
Patient (60%-80%) desired more information on stress and coping methods (i.e., relaxation technique) and a discussion of own experience
2nd phase: All reported satisfaction with revised model
Patients could share experience (71%), change thinking/behavior to a more positive perspective (57%), and reduce stress from learned relaxation technique (39%)
Psychosocial group intervention is applicable for Japanese BC patients when the model accounts for cultural differences
Areas requiring significant change were the provision of medical information (dropped out sexuality session and statistical medical prognosis and included coping information) and communication style (refocused main sources of support from husband to female family members as the)
Patients report sex same family member as main support because the core Asian family relationship is “parent-child”
Asian patients avoidance of sexual information may be due to value of role fulfillment, such as mother and house manage, rather than physical images for feminity and beauty. Therefore, study refocused topic on body image Medical information was provided by question and answer because disclosure of information to patients who do not want to be told the truth can cause serious harm (Asia, 1995)
Did not test the efficacy of intervention by using valid and reliable outcome measures, but relied on dropout rate and self-report of satisfaction
Sample size is small Can only generalized to population similar to sample
Japan, 2000[30] RCT: Baseline, 6 weeks, and 6 months test
Total: 50→46
EG: 23
CG: 23
65% and 8%
100% BC Japanese women The modified Fawzy and Fawzy (1994) intervention model from earlier study; it consisted of four components
Health education Coping skills training Stress management; and psychosocial support
Once weekly, 1.5-h sessions for 6 weeks
POMS
MAC
HAD
The EG had significantly lower scores than the controls for TMD and significantly higher scores for vigor on the POMS, and significantly higher scores for fighting spirit on the MAC at the end of the 6-week intervention. These improvements were sustained over 6 months of follow-up
Group members sustained support to each other even outside of study. They report that the support had been very helpful because it enabled them to talk to each other freely about various related issues
Participants in the intervention group sustained the beneficial coping style fighting spirit. This was attributed to the fact that they were able to adapt positive coping methods (i.e. relaxation) and utilize it long term Low participation rate (70%) versus Western countries (60%-87%) due to:
Cultural attitude to not seek professional assistance for psychosocial problems related to cancer experience Repress emotions
Age of subject and lack of child care Difficulty in access site
Small sample size in the current study The generalizability of our findings is uncertain There was a significant difference in age between the subjects who participated and those who did not The intervention in this study included four components. The effectiveness of each component would only be clarified by additional studies Participants were informed that intervention might benefit them, and that information and their expectation alone may have affected the results
Japan, 2001[27] Descriptive
Total: 126→52
Participants: 52
Nonparticipants: 73
16% and 58%
100% BC Japanese women The modified Fawzy and Fawzy (1994) intervention model from earlier study; it consisted of four components
Health education
Coping skills training
Stress management and psychosocial support
Once weekly, 1.5-h sessions for 6 weeks
Questionnaire asking patient’s intention to join. If no, the next question is whether they are interested in joining and reason for not joining HADS Of 126, only 52 (42%) participated in study Participation was greater among those with a higher level of anxiety measured by the HADS, those who had undergone surgery within the last 12 months, and those who were 50-65 years old
Among the nonparticipants, 20 (27%) were not interested in the intervention. Nonparticipants without any interest had significantly higher anxiety levels than those nonparticipants with interest (almost as high as the participated subjects) Disinterested nonparticipants had a significantly higher number of psychological reasons than those interested nonparticipants
Lower participation rate (42%) than Western world 60%-87%, due to:
A prescriptive approach for recruitment
Intervention was offered in the context of a randomized trial
Cultural value of repressed emotions
Discussing personal problems bring a deep sense of shame
Participants who had anxiety and had undergone surgery within the last 12 months were significantly more likely to participate. Future psychosocial group intervention should seek out these participants
50-65 years old were more likely to participate in the intervention compared to those 49 years or less because Those over 65 years of age were excluded
Young people have social barriers such as having children or going to work
Recommend offering disinterested nonparticipants support such as medication and individual psychotherapy
Not a representative sample of the BC population in terms of age, disease stage and time since surgery. Participants differ from each other significantly in disease stages
Rate of participation in the intervention was low
Didn’t consider religion/spiritual factors. Difficult to classify the Japanese religion because they tend to practice a mixture of Shinto and Buddhism
Japan, 2001[23] QE: Single group pre-, post-, at the end of the 3rd additional meeting, and 6 months after intervention
Data analysis of patients with nodal metastases and/or adjustment disorders
Total: 50→34
Lymph node metastases: 20
No lymph node metastases: 14
Adjustment disorders: 27
No adjustment disorders: 7
NR% and 32%
100% BC Japanese gender NR Program includes: Psycho-education, problem-solving, psychological support, relaxation training, and guided imagery. During the additional sessions, patients were encourage to talk without specific agenda
First, 5 once weekly meetings. Then, 3 additional group meeting every 2 months. Each session is 90 min
POMS For all patients, there were significant decrease in before and after intervention scores for negative emotions (depression, lack-of-vigor, tension-anxiety, and TMDs) There were significant differences between patients with/without metastases during each period, that is, patients with lymph node metastases had higher TMD scores than patients without metastasis
Similarly, patients with a psychiatric diagnosis had much higher TMD scores all through the period than patients without psychiatric diagnosis
Intervention has prolong effects on emotions of those with metastases and/or adjustment disorders In the present study, while no patients required further support after completion of the new program, further individual/group psychotherapy could be requested
This type of intervention program may be applicable to patients with other physical diseases and advanced stages of cancer, as well as to caregivers of dementia victims, etc.
Hong Kong, China, 2000[19] Qualitative
Total: 12 20% and 0%
25% colon cancer 42% BC 33% naso-pharyngeal cancer Chinese male (44%) and female (66%) Recruited participants participating in self-help groups outside of study. Self-help groups emphasize individual growth and mutual aid Semi-structured in-depth individual interviews of self-help group members All participants felt connected with another group member through their mutual experience; it allowed them to openly share their difficulties without feeling embarrassed
A majority (83%) of the participants reported a more positive outlook after seeing other cancer survivors; it gave them hope and confidence
66% of the participants stated that they felt useful helping another group member 83% of them felt they improved self-care from gained knowledge regarding treatment, diet, and health care and social benefit systems
The reported negative experience associated with joining the self-help group is feeling sad when conditions of a close group member deteriorates (25%)
Participation in self-help groups empower participants through role-modeling. New participants get inspired by old members and learn how to help themselves from shared experiences of old members
Self-help group members changed their outlook concerning the illness experience. Self-help groups, which provide an important context for empowering patients with cancer in the West, also can assist Chinese patients with cancer
NR
Hong Kong, China, 2006[12] RCT: Two phase pre-, 4th month and 8th month follow-up period tests
Pilot phase Total: 20→16 NR% and 20%
RCT
Total: 87→76
BMS: 27
SE: 16
SS: 16
CG: 17
80% and 13%
100% BC Chinese gender NR The BMS model focuses on: Normalizing experience, acceptance, forgiveness, self-love, using SS, and commitment to help others
Five 3 h weekly sessions (15 h in total)
SE therapy group focuses on: SS, emotion expression, dealing with fears, life prioritization, and improved relationships, communications, and symptom control
Weekly for 2 h for 8 weeks The SS self-help group has no structure
3 h each week for 5 weeks
SS self=Help group.
Nonstructured.
Participants decide on topic
5 weeks for 3 h each weeks
Salivary cortisol as the physiological stress marker GHQ Perceived Stress Scale Mini MAC Scale The Courtauld Emotional Control Scale Yale SS index Pilot: Salivary cortisol levels at 8 months. Lower than the baseline. GHQ reduction at 4 and 8 months compared to baseline Increased hope, sense of self-worth, and relaxation
RCT: BMS group produced the greatest and the most sustained effects. It enhanced positive SS, reduced psychological distress, emotional control, and negative mental adjustment
Most participants in SE group indicated the treatment was helpful, but changes in total salivary cortisol were not statistically significant
No benefit in the SS group. Group may have adverse effect on negative emotions in members after 4-8 months
Active professional intervention was more likely to yield positive outcomes, esp. interventions that focus on spiritual dimensions
Pilot: Reduce GHQ
RCT: BMS intervention: Reduce psych distress, emotional control, negative emotional, while increase SS. Salivary level reduced. d/t integrated approach
SE: Helped subjects in several areas, talk, self-hypnosis
SS: Group may have adverse effect on negative emotions in members after 4-8 months. It exposes patients to negative feelings they aren’t ready to work on it. Peer support groups with cancer or chronic illness patients may not be effective
CG: Participants decreased SS network and quality of SS.
BC patients commonly report feeling loneliness
Small population size Uneven distribution of sample
Incomplete randomization Self-selection to participate
China, 2013[3] RCT: Pre-RT tx versus 2 weeks after RT tx tests. Post 2 years follow-up
NR% and 4%
Total: 187→178
EG: 89
CG: 89
35% naso-pharyngeal 23% breast 17% gynecological 7% lung 30% other cancer Chinese men (42%) and women (58%) Both EG and CG received RT. The EG group also received interventions between pre-RT and 2 weeks after RT
Interventions depended on meeting problems and psychological issues.
It includes: psycho-education, cognitive behavioral therapy, and SE therapy
Twice weekly meetings of 60 min sessions over a total of 8-12 h
Pre-RT tx versus 2 weeks after RT tx: Self-Rating Anxiety Scale Zung Self-Rating Depression Scale European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 Post 2 years follow-up: OS DFS Pre-RT tx versus 2 weeks after RT tx Post-Rx tx, CG had more anxiety and depression and lower QOL than intervention group
Post-Rx tx, intervention significant improved: Symptoms of depression and anxiety and health-related QOL (i.e., better global health status and physical and emotional functioning, and less insomnia) when compared with controls
At 2 years follow-up, no improvement in DFS and OS rate in the intervention group compared to the CG
The results of this randomized trial demonstrate that a psychosocial intervention significantly reduced levels of depression and anxiety compared to a CG. Further, the intervention was effective for improving elements of QOL, such as global health status and physical functioning; it also increased emotional functioning, significantly decreased insomnia.
Authors suggest tailoring psychological support plans for cancer patients receiving RT to help them manage any emotional problems
Duration of time of survey for anxiety, depression, and QOL was short and unable to determine what changes of moods and QOL
Survival following RT is short
Use single center design and sample size was small
Indonesian, 1998[25] QE: pre- and post-test
Total: 133
EG: 87
Morning: 43
Evening: 44
CG: 46
Morning: 20
Evening: 26
NR% and 0%
100% BC Indonesian women Program includes information related to BC and its TX, problem-solving methods, and stress reduction methods.b Semi-formal structure with active discussions
Once weekly, 2 h sessions for 6 weeks
Body Image Scale Personal Assessment Of Intimacy In A Relationship Inventory The Self-efficacy Scale Women in a support group did experienced more positive responses in terms of body image, intimacy, and self-efficacy than women in the CG
Findings from field notes indicated women found participation in the support group to improve their self-confidence, coping (by using learned disease information and coping methods), and communication with husbands and other family members about
Majority of participants have RT and chemotherapy, which changed their breasts appearance. The breast appearance may be further complicated by lymphedema and affected participant’s psychological status
Measures may not be culturally sensitive. Most (75%) of participants were Islamic and Islamic culture promotes acceptance of things that happen to them. However, Chi-square test did not support influence of religion on BIS items
Recommendations: Longitudinal study with multiple measures
Generalizability limited to hospitals where sample was collected from (West and Central Jakarta)
Purposive sampling with nonrandom group assignments
Measures may not be culturally sensitive Time frame for support group activity is limited Stages of disease and TX not controlled
Malaysia, 2013[28] QE: Single group pre- and post-test
Total: 34
NR%
100% BC Malaysian women Psycho-education intervention with: presentation of medical information and discussion of cancer causes, prognosis, and treatment strategies 1998 versions of: The WHO-5 well-being Index or The Malay version of WHO-5 well-being Index for the non-English speaking participants Group psycho-education played a significant role in improving the well-being status and reducing depression of BC survivors as analyzed by the WHO-5 well-being index
The proportion of individuals with negative well-being had reduced from 9 (26.5%) to 1 (2.9%) after the psychological intervention
Majority of the participants had overcome depression and was found to be normal after the psycho-education 33 (97.1%)
Biological factors that affect patient’s well-being include the severity of the disease, treatment received, and the side effects related to the treatment
Depression is associated with those receiving radiotherapy treatment (indices fatigue and nausea), pain, surgery, and low self-esteem. Low self-esteem in BC women may be due to changes in body image, limited functional status during treatment, and poor body image brought on by surgery. Since QOL is affected by depression, all the factors mentioned above also influences QOL
Other studies have found psycho-education to enhance well-being and absence of depression [9, 34]
Generalizability limited to those with nonmetastatic BC, taking allopathic medication, and from similar geographic area as Melaka, Malaysia
Hawaii, 2002[21] Descriptive:
Interview based on questionnaire
Total: 194 NR%
34% BC 26% prostate 10% uterus 30% other 35% Caucasian 30% Filipino 18% Native Hawaiian 17% Japanese Ancestry Male (45%) and female (55%) Support groups of outside source
Frequency and duration of support group attendance is NR
It is a group where participants discuss disease and related issues
Interview Most patients (91%) reported that they received information about the cancer diagnosis and treatment, but only 38% of participants received info about support group
84% reported experiencing cancer-related stress: Women and younger patients reported more stress
Only 7% (n=11) had attended cancer support groups, but many were interested (49%) Of those who attended the cancer support group: 5 stated it helped them “very much;” 2 stated it had helped them “quite a bit;” and 4 reported it had helped them “a little” or “not at all.”
Contrary to the investigators’ expectations, both Japanese and Filipino American patients (64%) believed that a support group would have helped them, while only 38% of Hawaiians and 32% of European Americans responded that a support group would be helpful
As other studies did, newly diagnosed cancer patients report experiencing stress
Also, younger age and female gender experiencing more stress is consistent with other studies
Lack of knowledge about support group resources may explain their low attendance rates
Small sample size Influenced by response rate bias. Not generalizable to those terminally ill B/c respondents were long-term residents of Hawaii. Data might not be applicable to immigrants
United States, 2003[26] Descriptive
Total: 22
NR%
Most commonly breast, lung, naso-pharyngeal, colorectal, and cervical cancer survivors of Chinese women The Chinese women’s cancer support group: 1 h of education on some aspects of cancer then 1 h of discussion
Ongoing support group that meets on the first and third Saturday every month
Survey evaluation of the program at end of 2002 Participants report program helped them with coping with cancer by feeling more supported, less isolated, more hopeful, more knowledgeable about resources, and were now able to help others (17/18).
A majority (18/22) stated that they had applied skills they learned (i.e. Tai Chi, meditation, communication, coping with stress, centering, anger management, sharing, etc.) to their lives
They were better able to express their feelings and handle stress (16/18), and felt understood by other members (17/18) It also improved their outlook by increasing their courage, will power, and acceptance (20/22) and family relationship (15/22). Others complained that the meetings were too few
Started children’s support group for children age 4-14, who came with their mother to the support groups
The program meets emotional needs of Chinese women coping with trauma of cancer
Factors of program that made it successful
Provided a safe and comfortable environment where monolingual Chinese can share needs, concerns, hopes, and fears without judgment
Bicultural and bilingual facilitators
Trust and support from other members and facilitators
Collaboration with community partners
NR
Australia, 2011[33] Mixed qualitative and qualitative design: two phase (formative and pilot modified program)
1st formative phase
Total: 23
NR%
2nd pilot modified program phase
Total: 29→24
NR% and 18%
100% BC Chinese-Australian women Program involved 1 h of information sharing from interdisciplinary team regarding BC and remission prevention and 1 h of group sharing. It was delivered in Cantonese and used culturally relevant examples
2 h sessions over 8 weeks
Evaluation form and semi-structured discussion with all participants to identify usefulness and relevance of program 100% are grateful for a cancer support group that was presented in their language and had relevant cultural information Patients reported that program helped them connect with others with the same language, who are in similar situations. It made them more inclined to express their emotions and concerns and reduced their sense of isolation
They strongly agree or agree that the program improved their understanding of BC management (97.5%), increased their confidence in ability to cope (100%), provided opportunities to share their questions or anxiety (95.8%), and suited their needs (100%)
Design of cancer support group programs must be congruent with the cultural references of the member’s needs
Program effectiveness indicated by high attendance rate (70% of the participants missed only one session and in these cases) b/c
It should include culturally sensitive information
Majority of the participants were newly diagnosed (x<5 years) thus their needs were primarily informational rather than support-oriented
Surrounded by people of common experience, culture, and language promotes expression of feelings and counteracts the tendency of Chinese people, which is seen as a sign of weakness and disruptive of social harmony
Recommendation future research on long-term survivors’ need,. male vs. female support groups, and professional led versus cancer led programs
Convenience sample from metropolitan city in Sydney Some Chinese-Australian women were likely to be underrepresent (non-Cantonese speakers or those who lived in rural areas) May not be generalizable to males

BC: Breast cancer, RCT: Randomized controlled trial, POMS: Profile of Mood States, MAC: Mental Adjustment to Cancer, HADS: Hospital Anxiety and Depression Scale, NR: Not reported, PI: Pacific Islander, BMS: Body-mind-spirit, SE: Supportive-expressive, SS: Social support, GHQ: General Health Questionnaire, OS: Overall survival, DFS: Disease-free survival, DWI: Dealing with illness, QE: Quasi-experimental, EG: Experimental group, CG: Control group, TMD: Total mood disturbance, RT: Radiation therapy