Sexuality and intimacy in cancer and palliative care in The Netherlands: a hermeneutic study

Health care professionals are increasingly aware of the impact of cancer and cancer treatment on sexuality and intimacy, which are important components of quality of life until death. However, professionals are struggling with addressing these issues with cancer patients and their partners (clients). One of the reasons is lack of in-depth knowledge of clients’ experiences. Aims of the study • To increase understanding of how cancer and cancer treatment impact upon the experience of sexuality and intimacy of patients and their partners • To increase understanding of how cancer patients and their partners experience the way health care professionals address sexuality and intimacy • To gain insight into health care professional’s perceptions of their role regarding sexuality and intimacy for cancer patients and their partners • To develop patient driven models, tools and recommendations to acknowledge sexuality and intimacy in cancer and palliative care Methodology Using a hermeneutic phenomenological approach, data were collected in the Netherlands through interviewing 8 patients, 7 couples and 6 partners of patients affected by cancer, and 20 health care professionals working in cancer and palliative care. Analysis was based on the hermeneutic circle, moving from the whole to the parts and back, and was enhanced by the use of ATLAS.ti, by peer debriefing and by expert consultation. Findings Findings are based on multiple perspectives and are presented in a storyline using vignettes. The core theme of the findings is ‘worlds apart’, manifesting itself on several levels: between clients and professionals, between partners and on the intrapsychic level of the patient. Cancer and cancer treatment impact on sexual function, sexual relationship and sexual identity, resulting in a unique outcome for every client or couple. Most participants reported that health care professionals did not address sexuality and intimacy, and attempts made often did not match participants’ preferences. Most participants said they would value discussing the impact of cancer on their sexuality and intimacy. This does require a ‘personalized’ approach from the health care professional from the start of the interaction with the patient onwards. Based on the findings of this study and the available literature, a systemic client driven model (the BLISSS communication model) and an integral team approach (model of stepped skills) were developed. Conclusions and recommendations All types of cancer and cancer treatment potentially have an enormous adverse and enduring impact on sexuality and intimacy. Therefore, sexuality and intimacy should be put on the agenda of health care education and of every cancer and palliative care team. Both personal factors and lack of guidance hinder professionals in addressing sexuality and intimacy. Using the stepped skills team approach, team members can develop clear and complementing roles in order to properly address sexuality and intimacy issues, resulting in adequate support for clients in all sexual domains: sexual functioning, sexual relationship and sexual identity. Team members should be trained to develop the competencies matching their role.