Participation in patient support groups among cancer survivors: do psychosocial and medical factors have an impact?

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.

Preferences for models of peer support in the digital era: A cross‐sectional survey of people with cancer

“…These findings correspond with research indicating that many people with chronic disease, including those with cancer, report feelings of loneliness or social isolation, and the general trend towards community disconnectedness . The rates of demand for peer support identified in this study are considerably higher than that reported by other studies also involving large samples of people with cancer at various stages of the cancer journey . This likely reflects that this is one of the first studies to examine participation across a diversity of peer support formats and delivery modes.…”

“…Three reviews concluded that peer support is acceptable and useful to people with cancer . Paradoxically, studies suggest that cancer patients' participation in peer support is low with estimates varying from 5% to 25% . Peer support participants are more likely to be female, younger, and more highly educated than non‐participants .…”

Choir singing and health status in people affected by cancer

“…Cancer support groups have been linked to reduced anxiety and depression, a feeling of acceptance and belonging, a sense of hope and purpose, increased self‐esteem, better adaptation to illness, increased confidence and sense of control, and improved quality of life (Ashing‐Giwa et al., ; Ussher, Kirsten, Butow, & Sandoval, ; Zabalequi, Sanchez, Sanchez, & Juando, ). However, research suggests that uptake of traditional support groups is low and that some individuals may prefer alternative styles of support (Bui et al., ; Pascoe, Edeman, & Kidman, ; Sautier, Mehnert, Hocker, & Schilling, ; Ussher et al., ).…”

Patients' Knowledge and Attitudes towards Cancer Peer Support Programs

“…The need for psychosocial support differs from patient to patient [11]. However, peer support programs are mostly evaluated positively by their participants [5,10] and show many positive effects [3]. The influence of public relations on the attractiveness of cancer peer support programs remains an important question.…”

“…Various theories provide conclusive explanations for the benefits of support groups [3]. However, the participation in cancer support groups is rather low [4,5]. Studies report a range between 8 [5] and 28% of patients who consult other patients as a source of emotional support, whereas family (73%) and physicians (63%) were mentioned much more frequently [6].…”