Cancer peer support - association with patients' empowerment and integration in oncological care

Abstract

Peer support has become an important pillar in cancer care. For many cancer patients, cancer peer support groups offer a resource outside the professional psychosocial care to provide informational and emotional support. However, it has not yet been sufficiently investigated how cancer peer support groups contribute to patients’ empowerment and to what extent peer support groups are integrated into the oncological care system. Therefore, this cumulative dissertation consisting of four publications examines the integration of cancer peer support in routine care and assesses its association with psychological empowerment of cancer patients. To address these questions, an exploratory sequential mixed-methods design was carried out that comprises two major phases of research: phase I focuses on the experiences of cancer support group leaders, while phase II is directed at cancer patients and their experiences. The qualitative phase included interviews with 11 peer support representatives that were analysed thematically and served for the instrument development of the quantitative phase. A systematic literature search was simultaneously deployed to investigate the impact of peer support on empowerment. Zooming into the interactional component of psychological empowerment, cancer-related knowledge was then measured and compared between members and non-members of cancer peer support groups through t-tests and multiple linear regression. To enable this, a new participatory developed instrument was used in a cross-sectional survey with 1,121 cancer patients in Germany. Lastly, to assess the integration of peer support in cancer care, a cross-sectional survey with 266 cancer peer support group leaders was conducted and data analysis involved univariate and bivariate statistics. The systematic review of 29 included studies showed participation in peer support to be positively associated with the three components of psychological empowerment and revealed a small to moderate effect. Knowledge was identified as a central dimension of the studies as well as a lack of objective instruments to measure knowledge across different cancer entities. For instrument development, the qualitative interviews revealed diagnosis, treatment and (social) legal issues as central for cancer-related knowledge and were incorporated into the new Brief Cancer Knowledge Scale (BCKS). The BCKS was developed as a 14-item instrument and showed good psychometric properties. It was tested in a sample of cancer patients and showed peer support group members having significantly higher knowledge than non-members, but also high variance among all cancer patients. Peer support group membership was the third most decisive independent factor contributing to higher cancer-specific knowledge among education, internet use, age and gender. The survey with peer support group leaders found a positive assessment of the integration of peer support in care, but also differences between inpatient and outpatient care facilities, and low referrals. The quantitative evidence of the identified international literature and the conducted studies suggests participation in peer support programmes can promote patients’ empowerment, i.e. through cancer knowledge, which can be measured using the brief BCKS. Due to these findings and the identified lack of systematic integration of peer support across cancer care facilities, peer support in routine care should be promoted and integrated further for comprehensive, (cost-)effective oncological care for all patients nationwide. This can be achieved through additional resources such as central contact persons for patients, integrated pathways in care facilities and the concept of self-help friendliness. Thus, the findings can contribute to improvements in cancer care and increase patient-centred care.