The distinctiveness of Lesbian, Gay, Bisexual (LGB) persons affected by cancer treatment and impact on personhood: a participatory research study

Abstract

Background Delivering person-centred care is National Health Service policy within Scotland and advocated by the World Health Organisation. At present the needs and experiences of Lesbian, Gay and Bisexual (LGB) persons affected by cancer are not fully understood and they cannot be assured of healthcare delivered in a non-judgmental way. Methods This research is underpinned by person-centred philosophy with participatory research principles, using a devised Impact on Personhood Participatory Inquiry Framework (IPPIF). The researcher worked in-depth with nine LGB participants and their support persons exploring the impact of cancer treatment on aspects of personhood (i.e. long-term wellbeing and identity). The researcher worked with participants to co-create methods of exploration of how cancer treatment had impacted on them. Findings Participants’ accounts revealed a broad range of issues that both corroborate and build on existing evidence. LGB persons in this research explored context specific disorienting dilemmas in their own care experience, focusing on coming to terms with their diagnosis, negative experiences of care, and coping with the effects of treatments. Participants reflected on the impact of their treatments on their own self which included attitudes towards being labelled, reconciling intersectionality, and coming to terms with their sexual orientation. Participants discussed the development of new relationships and building confidence in new roles after treatment. Conclusions LGB persons were found to have distinct care experiences and needs related to cancer across a variety of areas. The main findings of this research provide an evidence base for this assertion, and were used to develop a national practitioner guide with the participants and key stakeholders. The guide was aimed at raising awareness of the needs of LGB persons affected by cancer and improving the care experience. Key words Person-centred Care; LGB Cancer Experience; Radiotherapy Treatment; Participatory Research; Patient Experience