Promoting good outcomes in Lesbian, Gay and Bisexual cancer care: a qualitative study of patients’experiences in clinical oncology
De Montfort University.
EXECUTIVE SUMMARY Cancer inequalities, including differences in cancer outcomes and patient satisfaction, affect a range of groups including lesbian, gay and bisexual (LGB) people. In its strategy to reduce these inequalities, the Department of Health commissioned the Cancer Patient Experience Survey (CPES) providing baseline data in which LGB patients were more likely to say their experiences were less positive than those of heterosexual patients. These differences included accessible information, psychosocial support and the human rights concerns of dignity and respect. The CPES, which was carried out in four successive years (2010-2014), suggesting that these are intractable problems, found that LGB patients were more likely to disagree with statements such as they ‘never felt treated as a set of cancer symptoms rather than as a whole person’ or the ‘doctor never talked about me as if I wasn’t there’. The CPES did not collect qualitative data and consequently the reasons for these differences were not known. This De Montfort University study, funded by Macmillan, illuminates some of the reasons for these survey findings as we were able to gather people’s accounts of their treatment and care. This report identifies key moments in the cancer journey where care provided for LGB cancer patients can contribute to their recovery and well-being. Alongside this evidence of unmet need, NHS England (2017) has recently issued guidance to support the introduction of mechanisms for recording sexual orientation across all health services in England for patients over 16. It recommends that sexual orientation monitoring occurs at every face to face contact with the patient. The collection of this monitoring data has implications; not only for cancer professionals, but also that patients themselves understand why this information is being requested. The report draws on LGB cancer patients’ motivations and methods for disclosing their sexual orientation and the perceived benefits of doing so for their quality of life. The findings will contribute to understanding the health benefits of coming out and how disclosure might be facilitated in hospital settings. This study provides compelling data about some of the factors underpinning inequalities in the experiences and, potentially, cancer outcomes for LGB patients. Managing the worry about whether it is safe to disclose their sexual orientation to professionals and the uncertainty about how this will be received presents an additional burden for LGB people with cancer. Participants in this study were sometimes hesitant to disclose because the opportunity did not arise or they were uncertain about its relevance. The report identifies some moments that matter in the care relationship where professionals could seek to facilitate disclosure thus contributing to Achieving World Class Cancer Outcomes (Department of Health, 2015) for LGB patients. In addition, the findings point to the importance of creating an inclusive care environment; participants noted that even in the Cancer Centres of Excellence, there were few visible signs of inclusion for LGB cancer patients. Steps to promote inclusion may entail a diversity policy statement, imagery on walls or the display of a LGB staff network on a hospital notice-board. participants also shared experiences where they were accepted in an everyday manner by hospital staff. They often talked about a whole hospital approach where they were acknowledged by staff from porters, health care assistants, nurses and consultants. These cancer narratives also highlight the need for LGB cancer support groups and tailored resources. The lack of LGB support groups in the UK mean that some participants were coping with their cancer with few forms of social and emotional support and they found few sources of information which addressed their needs. There was a clear demand for a greater range of LGB support resources that were relevant to the challenges and concerns of specific cancer types and reports of rather patchy provision in this regard, with differences influenced primarily by geographic location and cancer type. Finally, our findings suggest that participants had heterogeneous expectations of cancer care requiring complex .skills from professionals. Yet there is little or no curricula content in university programmes of Medicine or Nursing. This might suggest a lack of recognition of distinctive cancer care needs and may explain why participants reported different patient experiences even within the same hospital. The inclusion of research with LGB patients alongside heterosexual populations and relevant case studies to underpin Learning and Development and Continuous Professional Development to inform understanding of patient experience, psychosocial concerns and cancer risk is urgently needed.
cancer inequalities, lesbian, gay and bisexual, sex orientation, communication, disclosure, patient satisfaction
Fish, J., Williamson, I., Brown, J., Padley, W., Bell, K. and Long, J. (2018) Promoting good outcomes in Lesbian, Gay and Bisexual cancer care: a qualitative study of patients’ experiences in clinical oncology. Leicester: De Montfort University.
Institute of Health, Health Policy and Social Care