“To live until you die could actually include being intimate and having sex”: A focus group study on nurses’ experiences of their work with sexuality in palliative care

Abstract

Aims and objectives: To examine nurses’ experiences of working with issues of sexuality in palliative care. Background: Sexuality has value for human lives and relations and is important for one's overall well-being throughout life. Guidelines for palliative care state that sexuality should be addressed. Previous research shows that the inclusion of sexuality in general health care is deficient, and there is a knowledge gap on how sexuality is addressed in palliative care. Method: Within a qualitative design, the empirical material was obtained through three focus group interviews with eleven registered nurses working in palliative care. The interviews were analysed using qualitative content analysis. Result: Nurses experience that sexuality has an indistinct place in their work, “sexuality” is a word difficult to use, and differing views are held on whether it is relevant to address sexuality, and if so, when? Although they have experiences involving patient and partner sexuality, which is viewed as sexuality in transformation during the palliative care process, nurses seldom explicitly address patient or partner sexuality. Despite the lack of knowledge, routines and organisational support, they acknowledge the importance of addressing sexuality in palliative care, as they express that they want to do right. Conclusion: Overall, nurses appear to follow differing cultural, interpersonal and intrapsychic scripts on sexuality rather than knowledge-based guidelines. This underlines the importance of managers who safeguard the adherence to existing palliative care guidelines where sexuality is already included. In this work, it is important to be aware of norms to avoid excluding patients and partners that differ from the nurses themselves as well as from societal norms on sexuality. Relevance to clinical practices: The results can be used as a point of departure when implementing existing or new guidelines to include and address sexuality and sexual health needs in palliative care.