Cancer support group participation in the United Kingdom: a national survey.
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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ABSTRACT: Lung cancer patients and survivors are significantly less likely to use support groups than those with other cancers. In this study, we evaluated the utility and specificity of the Behavioral Model for Vulnerable Populations for modeling intention to participate in face-to-face (F2F) and online lung cancer support groups. Adults diagnosed with lung cancer (n = 230) completed measures assessing predisposing, enabling, and need factors associated with intention to use support services. Intention to join a F2F support group (found among 36.4% of survivors) was associated with positive attitude about F2F support groups, fewer perceived time constraints, less travel time from the clinic, and not having enough social support. Intention to join an online support group (34% of survivors) was associated with having more positive attitudes about online support, greater use of avoidance coping strategies, more comfort using computers, and fewer perceived time constraints. Demographics, medical history, health status, and psychological status were not associated with intention to join either type of group. Reducing barriers to participation and addressing attitudes about support services may be the most effective ways to increase utilization of lung cancer support services. Copyright © 2013 John Wiley & Sons, Ltd.Psycho-Oncology 12/2013; · 4.04 Impact Factor
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ABSTRACT: Objectives To investigate how comparable outcomes of medical communication research are when using different patient accrual methods by comparing cancer patients organization members with outpatient clinic patients. Methods In an experimental video-vignettes study, the impact of oncologist communication on trust was tested. Background characteristics (socio-demographics, trait anxiety, health locus of control and attachment style), reported trust, and the impact of communication on trust were compared between the two groups. Results Cancer patient organization members (n = 196) were younger and higher educated than clinical patients (n = 148). Members felt more personal control over their health (p < 01) but were also more anxious (p < 05). They reported lower trust in general health care (p < 05), in their own oncologist (p < 001) and in the oncologist in the videos (p < 05). The impact of oncologist communication on trust was similar for both groups. Conclusions Despite considerable differences in trust levels, both groups appear equally affected by oncologist communication. Thus, although including cancer patient organization members may impact the generalizability of some findings, using these participants to investigate communication appears justified. Practice implications Cancer patient organization members may regard their oncologist more critically. Research including both members and patients recruited through hospital clinics could take group membership into account as a possible confounder. Nonetheless, communicating competence, honesty and caring may benefit the relation with these patients similarly as with other patients.Patient Education and Counseling 05/2014; · 2.60 Impact Factor
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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