Cancer Self-help Groups Research Articles

Education about complementary and alternative medicine in cancer self-help groups by trained peers.

On average, about 50% of cancer patients use complementary and alternative medicine (CAM) in addition to conventional cancer treatment. Since there is a high need for information, patients often search for information about CAM and share experiences with peers, especially in self-help groups. In this study, we tested and evaluated an educational concept developed for group leaders of cancer self-help groups on how to approach the topic of CAM in their peer groups. The educational concept has been developed and piloted with health care professionals and representatives from different self-help organizations in Germany. It aims to inform and discuss the possibilities and limitations of CAM in terms of scientific evidence, to reflect user behavior, and to provide a guide on how to find and evaluate reliable and evidence-based information sources. First, self-help group leaders took part in an on-site training where they were educated on various CAM topics with the goal of being able to conduct the educational concept in their respective self-help groups. Then, the educated group leaders performed this concept in their groups. The educational concept was evaluated by both the group leaders and participants with respect to acceptance, usefulness, and satisfaction using paper-pencil questionnaires. The study was conducted in Germany based on an observational study design with a six-month follow-up. For the analyses, descriptive and univariate statistics for dependent samples were used. A total of n = 50 interested group leaders conducted the educational program in their groups. The most common implementation barriers were organizational or structural problems, as well as the feeling of being overwhelmed with managing the program in their groups. A total of n = 423 participants were educated with this program by their respective group leaders. The majority felt satisfied with the educational program and improved their knowledge about CAM. At the six months follow-up (T2), significantly more participants had consulted their physicians to inform themselves about CAM and felt more confident in finding reliable information about CAM. In this observational study, we have managed to successfully implement an educational concept with respect to the topic of CAM in cancer self-help groups. Based on the results, the concept approach will be modified to include both a CAM- professional and group leader to train the self-help groups. In the future, the effects of the program should be tested by a randomized trial.

Self-help friendliness in cancer care: A cross-sectional study among self-help group leaders in Germany.

Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self-help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self-help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. A cross-sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self-Help and the federal associations of cancer self-help. According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitalsand rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self-help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants.

Educational Program in Complementary and Alternative Medicine for Cancer Self-Help Groups

Background: The use of complementary and alternative medicine (CAM) among cancer patients is estimated to be approximately 40%. In self-help groups there is a need for information about CAM. This pilot study aimed to develop and evaluate a CAM educational program for cancer self-help groups. Methods: The educational program was developed in cooperation with health professionals and representatives of cancer self-help organizations. Participants were trained to increase their knowledge about CAM, to reflect their user behavior, and to use evidence-based information. Self-help group leaders were educated along the curriculum and motivated to carry out the course in their groups. Using questionnaires it was evaluated in terms of acceptance, feasibility, and satisfaction by participants. Results: A total of 171 self-help group leaders were educated. In a pilot run 7 implemented the course in their groups, with a total of 70 participants. Most of them (n = 60, 85.7%) appreciated its contents and material and would recommend it. Overall acceptance and satisfaction were high. Conclusions: The educational program was implemented successfully in a small sample and showed positive results for acceptance and feasibility. In addition to consultation by experts, it can be a good option to inform cancer survivors about CAM.

Assessment of quality of life in women five years after breast cancer surgery, members of Breast Cancer Self-Help Groups - non-randomized, cross-sectional study.

Aim of the studyTo assess the quality of life in patients treated for breast cancer who were 5 years after diagnosis and were active members of Breast Cancer Self-Help Groups.Material and methodsThe study had a non-randomized, cross-sectional design. We enrolled 167 women who were more than 5 years after mastectomy and were active members of Breast Cancer Self-Help Groups (group A1). As a control group we enrolled 117 women after mastectomy – not members of such support groups (group A2). For the evaluation of the quality of life in both groups we used the following standardized questionnaires – EORTC QLQ-C30 and EORTC QLQ-BR23 as well the Mini-MAC scale for the assessment of strategies of coping with disease.ResultsBased on QLQ C30 scores, group A1 had better emotional functioning (p = 0.0005) and a higher general quality of life (p = 0.0259), whereas group A2 had better role functioning (p = 0.0042). Based on QLQ BR23 scores, there were statistically significant differences in body image (p = 0.0366) and life perspectives (p = 0.0313) in favor of group A1. In the control group, there was a greater use of destructive coping strategies and anxious preoccupation (p = 0.1957).ConclusionsMembership in Amazon groups improves functioning in breast cancer patients that can also extend into a five-year period after treatment completion.

Tai Chi Qigong for survivors of breast cancer: a randomised controlled trial

BackgroundBreast cancer is the most common malignancy in Chinese women. Conventional cancer treatments can increase the survival but often cause cardiovascular complications that compromise quality of life. Findings from previous exploratory studies showed that Tai Chi Qigong (TCQ) might induce favourable cardiovascular changes in cancer survivors. We aimed to assess the efficacy of a TCQ programme in improving arterial haemodynamics and quality of life in breast cancer survivors. MethodsIn this single-blinded, randomised controlled trial, 54 Chinese women who survived breast cancer and completed conventional medical care were recruited through a cancer self-help group and a medical clinic in Hong Kong. The participants were randomly allocated to either TCQ or no training (control) using computer-generated random numbers. Participants in the TCQ group attended two 1 h sessions per week for 3 months at the Nature Health Qigong Association (Hong Kong); during these sessions participants practiced the 18 forms of Tai Chi Internal Qigong. Both groups received usual medical care. The primary outcomes were maximum systolic and minimum diastolic arterial blood flow velocities as measured by a Doppler ultrasound machine. The secondary outcomes were oxygen saturation in blood at rest (as measured by an oximeter) and quality of life measured with the Functional Assessment of Cancer Therapy–Breast (FACT-B v4). Data were collected at baseline, post-test, and 3 months (follow-up). Two-way repeated-measures analysis of variance and intention-to-treat analysis were used in data analysis. Ethical approval was obtained from the Human Research Ethics Committee of Hong Kong University. The trial was registered with ClinicalTrials.gov (NCT02420249). Written informed consent was obtained from each participant. FindingsBaseline characteristics were comparable between participants in the TCQ (n=33; mean age 52·7 years, SD 7·5 years) and control group (n=21; mean age 51·5 years, SD 8·2 years). The TCQ and control groups showed similar changes in systolic velocity (group-by-time interaction F2,102=2·118, 95% CI 14·90–18·13; p=0·126; ηp2=0·040) and diastolic velocity (group-by-time interaction2,102=1·375, 95% CI 1·49–2·33; p=0·258; ηp2=0·026). Blood oxygen saturation increased by 0·5% from baseline to follow-up test in the TCQ group (p=0·002, 95% CI −0·78 to −0·19) while no change was noted in the control group (p=0·119, 95%CI −1·03 to 0·13). The FACT-B total score decreased by 23·04 points (24·0%) between baseline and follow up in the control group only (p=0·033, 95% CI 2·12–43·97; TCQ group: p=0·427, 95%CI −8·33 to 19·22). No adverse events were reported. InterpretationThe TCQ programme improved blood oxygenation and quality of life, but it did not improve blood flow velocities in Chinese women who had survived breast cancer. Further studies could examine the mechanisms or causes of the favourable changes. FundingSeed Funding Programme for Basic Research (201410159001), the University of Hong Kong.

Experiences of aromatherapy massage among adult female cancer patients: A qualitative study.

To explore the experiences towards aromatherapy massage use, and to examine the perceived benefits and adverse effects of aromatherapy massage among adult female cancer patients. A qualitative research design was used. Fifteen women with cancer were recruited for semi-structured interviews. Sample recruitment was undertaken through cancer self-help groups and referrals of a private aromatherapy clinic by convenience sampling. The interview data were analysed by thematic analysis. All participants had a positive experience towards aromatherapy massage. The perceived benefits of aromatherapy massage included physical and psychological dimensions: overall comfort, relaxation, reduced pain, muscular tension, lymphoedema and numbness, improved sleep, energy level, appetite and mood. Interestingly, a few participants reported that aromatherapy massage helped to enhance self-acceptance and coping with their altered torso. No adverse effects were reported. The findings focused on four main themes that emerged: (i) an immediate effect that brings all-round comfort and reconnection to daily life; (ii) a pleasurable moment to forget the disease with aroma as a booster; (iii) a pampering experience of being cared for with a sense of dignity preserved; and (iv) communicating with the failing body. This study contributed by providing a better understanding in aromatherapy massage from female cancer patients' perspective which adds to the existing body of knowledge. The implications for nursing practice, education and future research were suggested. Aromatherapy massage seems to have both physical and psychological benefits for women with cancer. The findings elucidated a wide range of benefits that are perceived in such complex intervention, and the contextual factors that may influence these perceived benefits. This will inform future nurse-led quantitative research in the clinical setting. The study highlights the importance of touch towards a caring relationship and the provision of cancer care with a gender-specific approach. Exploring of the lived experience of aromatherapy massage and its meaning enables the healthcare professionals to gain insights into the needs, preferences and values for cancer care among female cancer population. While nurses play a crucial role in collaborating with cancer patients in the choice of CAM therapies, nurses should advise them to attend practising aromatherapists with recognised training and competency who should be members of aromatherapy professional associations. As aromatherapy is an unregulated profession, nurses may also advise oncology patients on the international guideline and institutional policies for aromatherapy massage use in the hospital setting. Nurses may broaden the caring repertoire by expanding their knowledge and skills in aromatherapy massage such as understanding the basic essential oils pharmacology, massage skills and therapy efficacy for symptoms management in cancer care. Oncology clinicians and nurses should support and guide patients' decision in the use of aromatherapy massage by providing evidence-based and comprehensive advice on the potential benefits, risks and related safety issues.

Cross-sectional evaluation of long-term bowel issues after radical cystectomy.

318 Background: We had previously shown that a significant number of patients after radical cystectomy (RC) suffer from changes in bowel habits and defecation. Reports addressing long-term bowel disorders following RC are rare. This cross sectional study evaluates long-term bowel issues in a large cohort with the help of an issue-tailored questionnaire. Methods: For this purpose a questionnaire assessing changes in bowel function and its impact on daily life was developed and distributed among members of the German bladder cancer self-help group. A total of 431 patients after RC were evaluated. Symptoms such as diarrhea, constipation, urge to defecate, sensation of incomplete defecation, flatulence, and impact on quality of life (QoL) were assessed. Results: A total of 324 patients were followed ≥1 year, 43% patients of those reported current bowel disorders, 40% life restriction and 60% dissatisfaction. Most frequent bowel symptoms were flatulence (49%), followed by diarrhea (30%) and the sensation of incomplete defecation (23%). The highest prevalence rate of diarrhea is reported in year 3 after surgery: <3 months after surgery 14%, 3-11 months 21%, 12-23 months 18%, 24-35 months 44%, 36-59 months 36%, ≥60 months 27% (p<0.01). Also flatulence is a long-term bowel symptom with a prevalence of 50% ≥1 year vs 37% <1 year after surgery (p=0.0334), while the prevalence of other bowel symptoms did not change over time. After 12 months, diarrhea significantly correlated with flatulence, uncontrolled stool loss, urge to defecate, younger age at time of surgery, and the size of bowel segment for urinary diversion (all p<0.01). Patients suffering from diarrhea report a higher defecation frequency, a lower QoL, a higher dissatisfaction level, a lower energy level (all p<0.01), and a lower health state (p=0.0488). Conclusions: Diarrhea is a prominent long-term bowel symptom after RC. A better understanding of long-term bowel symptoms might lead to optimized surgical procedures, post-operative medication and patient education.

The Experience of Self-help Group Activities among Women with Breast Cancer in Korea

Purpose: The purpose of the study was to explore and describe the experience of breast cancer self-help group activities in Korea. Methods: The data were collected via individual in-depth interviews with 8 women with breast cancer, who participated in self-help groups during 2012~2013. All interviews were audio-taped and transcribed, and they were analyzed using a phenomenological method. Results: Six theme clusters were identified. “Breakthrough toward survival” describes how the participants identified self-help groups and got involved in the activities. “Genuine comfort obtained by ‘misery loves company’ deals with the emotional relief and catharsis. “New life fully recharged” demonstrates the changed belief system and the joy for life and living. “Rebirth in family” deals with how family dynamics has been changed. “Societal change by raising collective consciousness” illustrates many activities to improve their rights and advocate employment issues. “Obstacles to the group harmony” illustrates the major difficulties including interpersonal conflicts the participants encountered during their participation. Conclusion: The results of the study showed that participating in self-help groups was mostly beneficial for women with breast cancer. Therefore, oncology professionals need to encourage them to participate in self-help groups and also need to provide professional support to self-help groups for their harmonious interpersonal relationships.

Correlates Influencing Cognitive Impairment in Breast Cancer Patients receiving Chemotherapy

Purpose: The purpose of this study was to identify correlates influencing cognitive impairment in breast cancer patients receiving chemotherapy. Methods: Study subjects consisted of 102 breast cancer patients who received chemotherapy. Subjects were the members of a breast cancer self-help group. Data were collected using structured self-reporting questionnaires including scales of cognitive impairment, physical status, fatigue, quality of life, emotional status, sleeping, family support, and menopausal symptoms. Statistical Package for Social Sciences was used for statistical analyses. Results: Breast cancer patients receiving chemotherapy appeared to show a high level of cognitive impairment. Among demographic characteristics, the effects of economic status and family type on cognitive impairment were found to be statistically significant. Among disease related characteristics, the effect of duration of chemotherapy on cognitive impairment was statistically significant. Menopausal symptoms were positively associated with cognitive impairment. The model including postmenopausal symptoms and caregiver type explained about 66% of variability in cognitive impairment. Conclusion: These findings highlight the importance of contextual factors in understanding cognitive impairment in breast cancer patients receiving chemotherapy and can be used to develop appropriate, effective nursing interventions.

Differences in illness-related knowledge of breast cancer patients according to their involvement in self-help groups

Objective. There is little evidence of the gain in illness-related knowledge obtained in breast cancer self-help groups. This paper seeks to explore whether participants in self-help groups know more about breast cancer than non-participants and to examine the level of knowledge of leaders of self-help groups in comparison to the other two groups. Methods. A sample of 727 women affected by breast cancer was interviewed with a self-administered questionnaire assessing knowledge on disease, prevention, and aftercare. The interviewing took place during three different surveys conducted between 2005 and 2009. The data of the second and third survey were used in order to create a larger data base and to include self-help group leaders. Results. Participants in self-help groups knew significantly more than non-participants, although only in the subtests lymph edema and breast-examination. Leaders of support groups scored highest in all subtests. Involvement in a support group was most decisive for respondents’ knowledge, but other factors such as age, education, and medical history also had effects. Conclusion. Self-help groups provide a considerable potential for acquiring illness-related knowledge. As the participation rate in German breast cancer self-help groups is still quite low, it seems reasonable to generate more interest in this kind of support.

Changes in Upper Extemity Sensation and the Quality of Life for Patients Following Mastectomy

Purpose: The purpose of this study was to examine the sensation changes in upper extremity and the quality of life for post-operative mastectomy patients. Methods: This study used a descriptive study design. The participants were 132 women who had mastectomies after being diagnosed with breast cancer and were participating in breast cancer self-help groups. The sensation changes in the arm of the surgery site was measured by the arm symptoms which were subjective uncomfortable feelings of the affected arm, and the quality of life was measured by Medical Outcomes Study Short Form-36. Collected data were analyzed by ANOVA, t-test, χ²-test and multiple regression with SPSS WIN 12.0 program. Results: Patients with stage Ⅳ breast cancer had severe changes in sensation of the arm. Participants with lymphedema had statistically significant changes in sensation compared to participants without lymphedema, but the quality of life was not different between the two groups. Pain by the SF 36 was statistically different between the two groups, with- and without-lymphedema. The factors in upper extremity’s sensation changes which influence on quality of life were pain and heaviness. Conclusion: Nursing intervention for relieving pain and heaviness of the affected arm needs to be developed in order to improve QOL of the breast cancer survivors.

Intervention to enhance empowerment in breast cancer self‐help groups

As arduous psychological reactions and loss of control almost inevitably represent a challenge for women diagnosed and treated for breast cancer, a participatory intervention study was initiated that aimed to enhance empowerment in breast cancer self-help groups. Women newly diagnosed with breast cancer were invited to participate. The intervention encompassed three professionally led self-help groups running sequentially, each group for approximately 4 months. Each group of five to seven participants met weekly. Several empowerment strategies were initiated by two professional facilitators, aiming to promote empowerment processes and to manage stress. The participants experienced group participation as both empowering and as a valuable source of support, and although the group processes developed very differently, a strong sense of fellowship developed in all three groups. The discussion highlights the findings in relation to several theoretical perspectives including social capital, social cohesion, risky agreements, helper-therapy and power/empowerment. We conclude that empowerment strategies that are implemented in professionally led breast cancer self-help groups can contribute to participant empowerment and function as an important source of re-discovery and confirmation of the participants' strengths and abilities.

`Blokes Don't Like That Sort of Thing'

Research has demonstrated that gender is a barrier to men's participation in self-help groups. In this article I analyse how four men and seven women negotiate their identities as members of cancer self-help groups. Their accounts were transcribed and analysed using a synthetic approach to discursive psychology. Women's accounts were organized around the notion of receiving help whereas men appeared to resist this type of identity. I explore how men attended to the presentation of a masculine identity and focus on how men negotiated 'legitimately masculine' reasons to be engaged in self-help groups.

Social Support and Interpersonal Stress in Professional-Led Breast Cancer Self-Help Groups

This participatory action research study included three professionally-led self-help groups for women recovering from breast cancer. The groups ran sequentially and met once a week for approximately four months. Empowerment was an explicit and strongly emphasized theme in the self-help groups' activities, aimed at stimulating the participants' strengths and abilities. The study revealed that self-help group participation was considered valuable by the women involved. The participants experienced a strong sense of fellowship, mutual empathy and care, healing laughter and improved relationships with families, friends, colleagues and health professionals. Negative experiences also occurred, caused by variations in ability to express emotions and in severity of disease, the expected death of a group member, pre-termination of group membership and stress induced by listening to others' stories. The negative experiences originated only rarely from interpersonal stress. The study shows that the social support pr...

Japanese cancer patient participation in and satisfaction with treatment-related decision-making: A qualitative study

BackgroundOver the last decade, patient involvement in treatment-related decision-making has been widely advocated in Japan, where patient-physician encounters are still under the influence of the long-standing tradition of paternalism. Despite this profound change in clinical practice, studies investigating the actual preferences of Japanese people regarding involvement in treatment-related decision-making are limited. The main objectives of this study were to (1) reveal the actual level of involvement of Japanese cancer patients in the treatment-related decision-making and their overall satisfaction with the decision-making process, and (2) consider the practical implications of increased satisfaction in cancer patients with regard to the decision-making process.MethodsWe conducted semi-structured interviews with 24 Japanese cancer patients who were recruited from a cancer self-help group in Tokyo. The interviews were qualitatively analysed using the approach described by Lofland and Lofland.ResultsThe analyses of the patients' interviews focused on 2 aspects: (1) who made treatment-related decisions (the physician or the patient), and (2) the informants' overall satisfaction with the decision-making process. The analyses revealed the following 5 categories of decision-making: 'patient as the active decision maker', 'doctor selection', 'wilfully entrusting the physician', 'compelled decision-making', and 'surrendering decision-making'. While the informants under the first 3 categories were fairly satisfied with the decision-making process, those under the latter 2 were extremely dissatisfied. Informants' views regarding their preferred role in the decision-making process varied substantially from complete physician control to complete patient control; the key factor for their satisfaction was the relation between their preferred involvement in decision-making and their actual level of involvement, irrespective of who the decision maker was.ConclusionIn order to increase patient satisfaction with regard to the treatment-related decision-making process, healthcare professionals in Japan must assess individual patient preferences and provide healthcare accordingly. Moreover, a better environment should be created in hospitals and in society to facilitate patients in expressing their preferences and appropriate resources need to be made available to facilitate their decision-making process.

Ethnicity and participation in cancer self‐help groups

Investigations of the benefits of membership of a cancer self-help group have suggested that it leads to improved sense of support, increased ability to deal with life-events, and decreased anxiety, confusion, depression and helplessness. However, some evidence suggests that people from black and ethnic groups are less likely to join a cancer self-help group. The main aims of the reported study were: to explore possible reasons why people from some ethnic groups have not participated in self-help to the same extent as the rest of the community; and to identify ways in which participation of people from ethnic groups can be increased. A qualitative interview-based study of 68 people active in self-help was carried out as a partnership between an academic institution and a community organisation. A thematic analysis of the interview transcripts identified three main aspects of the value of being a member of a self-help group, regardless of interviewees' self-identified ethnicity: forming a sense of togetherness, learning from one other, and developing mutuality. We identify a number of reasons that discourage or encourage people from black and ethnic groups to join cancer self-help groups. We discuss some limits, identified by interviewees, that affect development of feelings of togetherness and mutuality and we conclude with some brief recommendations about widening participation in cancer self-help.

Cancer Self-Help Groups in China

In spite of the rapid growth of cancer self-help groups in China, it is not known whether these groups are beneficial to cancer patients. This study, the first of its kind in China, attempted to assess cancer self-help group effectiveness from the members’ perspective. The findings show that an overwhelming majority reported positive changes in their coping behaviors, attitudes toward self, and interpersonal relationships after joining the group. This study also found that the great majority had obtained all the listed benefits. Furthermore, although some agreed that their groups should affect social policies, many were not sure if that was possible. It can be envisaged that Chinese cancer self-help groups will continue to promote individual gains and self-empowerment among their members. Political activism or collective empowerment is not an alternative direction, at least for the time being.

Cancer Self-help Groups are Here to Stay: Issues and Challenges for Health Professionals

Cancer Self-help Groups are Here to Stay: Issues and Challenges for Health Professionals

The supportive care needs of men with prostate cancer (2000).

The diagnosis and subsequent treatment of prostate cancer is followed by a range of significant disease specific and iatrogenic sequelae. However, the supportive care needs of men with prostate cancer are not well described in the literature. The present study assesses the supportive care needs of men with prostate cancer who are members of prostate cancer self-help groups in Queensland, Australia. In all, 206 men aged between 48 and 85 years (mean=68) completed the Supportive Care Needs Survey (SCNS) (62% response). The SCNS is a validated measure assessing perceived need in the domains of psychological needs, health system and information needs, physical and daily living needs, patient care and support, and sexuality. Items assessing need for access to services and resources were also included. One third of the sample reported a moderate to high need for help for multiple items in the sexuality, psychological and health system and information domains. Younger men reported greater need in the sexuality domain; living in major urban centres was predictive of greater psychological need; being closer to the time of diagnosis was related to greater need for help in the physical and daily living domain; having prostate cancer that is not in remission, having received radiation therapy, and lower levels of education were predictive of greater need for help in patient care and support. Of the total sample, 55% of men had used alternative cancer treatments in the past 12 months, with younger and more educated men more likely to use alternative therapies. Interventions in sexuality, psychological concerns and informational support are priorities for men with prostate cancer.

Challenges of participatory research: reflections on a study with breast cancer self-help groups.

OBJECTIVE: To review and discuss issues related to participatory research, as they apply within the arena of cancer control. DESIGN: A participatory research study with breast cancer self-help groups is referred to for description and discussion purposes. That study employed primarily individual and group interviews to assess benefits and limitations of self-help groups. SETTINGS: Four breast cancer self-help groups in Ontario communities provided the core involvement in the participatory research project. RESULTS: The values and practices of mainstream academic research often conflict with those of research emphasizing participation and control of communities under study, leading to a variety of challenges for the latter approaches. Practical constraints faced by many community groups have important implications for participatory research approaches. CONCLUSIONS: A balance needs to be found for participatory research within cancer control - one that ensures that the core aims of participatory research are maintained, while simultaneously acknowledging the various challenges that make a fully participatory project unrealistic. Steps can be taken to achieve a workable balance.