Cancer support group participation in the United Kingdom: A national survey

Macmillan Research Unit, School of Nursing, Midwifery, and Social Work, University of Manchester, Jean McFarlane Building, University Place, Oxford Road, Manchester M13 9PL, UK.
Supportive Care in Cancer (Impact Factor: 2.36). 05/2011; 19(5):675-83. DOI: 10.1007/s00520-010-0887-9
Source: PubMed

ABSTRACT Existing data on cancer support groups come largely from small studies in specific geographic areas, particularly in the UK. This study was designed on a national scale to describe the characteristics of support group members and examine associations between group and participant variables and perceived outcomes.
A postal survey of support groups in the UK was performed with group leaders asked to distribute questionnaires to their members. Questionnaires included sections for demographic and medical information, group attendance, perceived outcomes and psychosocial variables.
From an original pool of 2,883 members from 206 groups, a total of 748 patient members within 172 support groups participated. Females comprised 68.2% of the sample, mean age was 65.4 ± 10.2 years, and 73.3% were retired. Post-secondary education was reported by 42.2%, and the proportion living in the two least deprived quartiles was 35.6%. Participants were a mean of 76.5 ± 67.4 months post-diagnosis, with 60.6% in remission. Breast cancer was the most common diagnosis (48.8%). The mean length of membership was 56.0 ± 54.7 months. Frequency of perceived benefits was positively associated with length of membership and attendance record. Psychosocial outcomes did not differ based on group variables.
Support group participants are more often female, white, retired, married and long-term cancer survivors. Contrary to earlier studies, support group members do not tend to have high educational achievements or socioeconomic status. Perceived benefits are highest among long-term members and regular attenders.

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    • "pation is neither significantly associated with a broad range of demographic and medical characteristics nor with emotional distress , QoL , social support , and coping strategies except for being unemployed , undergoing an increased number of overall treatments , and a more active emotion - oriented coping style . Similar results were observed by Stevinson et al . ( 2011 ) and Hamama - Raz et al . ( 2012 ) who did not find significant group differences in several psychosocial outcomes ( e . g . social support , group cohesion , social difficulties ) . Nevertheless , our findings are inconsistent with previous results ( Gaber & Hundertmark - Mayser 2005 ; Grande et al . 2006 ; Waldmann et al . 2007 ) ind"
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    ABSTRACT: A better understanding of the role of psychosocial resources and factors associated with participating in patient support groups appears to be important for the development and implementation of cancer survivorship care plans. We therefore investigated the frequency of participation in and satisfaction with patient support groups after completion of a rehabilitation programme and aimed to examine differences in demographic, medical and psychosocial characteristics between group participants and non-participants. We further aimed to identify predictors of participation in patient support groups. A total of 1281 eligible patients (75.5% participation rate) were recruited on average 11 months post diagnosis and assessed at the beginning (t1 ), at the end (t2 ) and 12 months after rehabilitation (t3 ). Study participants completed self-report measures assessing support-group participation and satisfaction, psychosocial distress (anxiety, fear of cancer recurrence, depression), social support, coping, quality of life, pain and treatment-related characteristics. Sixty-seven patients (7.6%) participated in a patient self-help group. Being unemployed, undergoing an increased number of overall treatments, and a higher active emotion-oriented coping style significantly predicted self-help group participation; the predictive power of the multivariate logistic regression model was rather weak (Nagelkerke's R(2) = 0.07). Our data provide evidence that self-help group participation in cancer patients may be largely related to other factors than medical or psychosocial distress.
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    Washington. DC, Washington D.C; 01/2010
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    ABSTRACT: Aim: The overall aim was to explore access to and the perception of social support among migrants and non-migrants regarding two different phases in the cancer control continuum: 1) cancer screening and 2) cancer care. Substudy I investigated the role of social support in informal relations for participation in mammography screening (IA) and the perception of social support in informal relations during cancer care (IB). Substudy II explored access to and the perception of social support in formal relations with healthcare professionals (IIA) and cancer patient associations (IIB) during cancer care. Lastly, Substudy III took a methodological approach to exploring the barriers encountered when conducting cross-cultural surveys on cancer wards. Methods: Substudy IA was a registry study utilizing data on 84,489 non-migrant women, 5,484 women born in Western countries other than Denmark, and 5,891 women born in non-Western countries who had been invited to attend at he mammography screening program in Copenhagen, Denmark. The effect of household size on the uptake of mammography screening was estimated adjusted for socioeconomic position, use of primary healthcare services, and hospitalization. Substudies IB and IIA used narrative interviews with 18 adult non-migrant and migrant cancer patients analyzed by phenomenological methods. Substudy IIB used semi-structured telephone interviews with key informants from major cancer patient associations in the Nordic countries (Denmark, Sweden, Norway, Finland and Iceland) analyzed thematically using elements from organizational theory. Lastly, Substudy III used participant observation combined with semi-structured interviews with nurses on cancer wards. This material was analyzed thematically. Results: Substudy IA found the crude Odds Ratio (OR) for non-use of mammography screening to be 1.38 (95% CI, 1.30-1.46) for women born in other-Western countries and 1.80 (95% CI, 1.71-1.90) for women born in non-Western countries compared with Danish-born women. Adjusted OR for non-use among women living within households of 2–4 persons was 0.63 (95% CI, 0.61-0.65) among Danish-born women; 0.60 (95% CI, 0.53-0.69) among women born in other-Western countries; and 0.74 (95% CI, 0.64-0.85) among non-Western women compared with women living alone. Substudy IB found that migrant patients had social networks that were more dispersed than those of non-migrant patients. However, common difficulties in asking for and receiving emotional support were related to cancer being perceived as a fatal disease within informal relations. This led to fear among patients that articulating needs for support would result in loss of normality and non-patient identity. For social support in formal relations, Substudy IIA showed how both non-migrant and migrant patients perceived support given by healthcare professionals as available, empathic and valuable. Prerequisites for provision of support were 1) setting aside sufficient time for the patient to feel safe and able to verbalize emotional concerns, 2) continuity in relationships, and 3) ability to understand the patient’s emotional reactions without creating additional distress. Substudy IIB found that major cancer patient associations in the Nordic countries differed in relation to stage of policy and practices regarding migrant patients. Migrant patients were perceived to face barriers in accessing support within general healthcare services due to language barriers and socioeconomic vulnerability, and needs for services provided by associations were felt to be high. Adaptation of services focused on overcoming linguistic barriers, using pro-active outreach strategies and involving staff with migrant background. Substudy III found cross-cultural surveys on cancer wards using name-based identification of respondents to be inflicted with various difficulties regarding identification of respondents and involvement of nurses due to both external (policy changes, strike among nurses) and internal factors on the wards (heavy workload, lack of time, focus on medical aspects of cancer rather than psychosocial aspects). Conclusion: Although conceptualized and measured differently in the substudies, social support was found to be important for participation in cancer screening and when undergoing cancer care among migrants and non-migrants. Using multiple methods and including a diverse population group elucidated both differences and similarities in access to and perception of social support from informal and formal relations. Although fragile social networks, more common among migrant cancer patients, may have difficulty in providing emotional support, this support can also be lacking in denser social networks. Efforts are needed to show informal relations how they can support the patient throughout cancer care. Support from healthcare professionals is of great importance to patients but may be restricted by organizational and individual factors. Psychosocial interventions offered by cancer patient associations may be another important source of support, but a more systematic approach is needed to facilitate development of policies and practices to make these associations more sensitive to migrants’ needs. Moreover, to gain sufficient knowledge about patient perspectives on living with cancer, the representation of migrant patients in psychosocial cancer research should be increased. This could be achieved by involving healthcare professionals in research, but awareness of the influence of possible external and internal factors and efforts to deal with these factors are fundamental to successfully implementing cross-cultural cancer research in a clinical setting.
    05/2011, Degree: PhD, Supervisor: Allan Krasnik, Tine Tjornhoj-Thomsen
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