Title: Improving communication between clinicians and LGBT patients with serious illness: a national qualitative study to develop and deliver evidence-based guidance.
Funder: Department of Health and Social Care

Abstract: BACKGROUND Lesbian, Gay, Bisexual and/or Trans (LGBT) people have worse health statuses, and poorer access to health services and health care experiences. Good communication and person-centred care that take into account sexual identity and gender history are essential to improve their care. Poor communication increases risks of higher NHS costs due to lack of engagement in care and crisis management, and the threat of not identifying significant others in situations of future lost capacity. QUESTIONS + AIMS This research seeks to improve care by answering the research questions: What are the perspectives of LGBT people with serious illness, their significant others and their clinicians, regarding discussion of sexual identity and gender history? How should healthcare professionals incorporate exploration of sexual identity and gender history in assessment and care planning and care delivery, and how should this be recorded in patient records? The main aims are: 1) To identify the preferences of LGBT patients and their caregivers, and examples of best practices from the perspectives of health care professionals and LGBT people, with respect to exploring and sharing information regarding sexual identity and gender history among LGBT people with serious illness. 2) To develop, field-test and deliver evidence-based freely accessible guidance and recommendations for use by clinicians and educators, to improve communication and information recording of sexual identity and gender history. PLAN OF INVESTIGATION Design: Qualitative study with up to n=90 in-depth interviews: LGBT people (&le;40), their informal caregivers (&le;20), multi-professional clinicians (&le;30). Guidance development incorporating n=5 cognitive interviews with professionals. Interviews with LGBT individuals Inclusion criteria: 18 years or over; facing serious illness; self-identify as LGBT. Exclusion criteria: unable to give informed consent; too frail, unwell or distressed to participate. Recruitment: We will use the successful recruitment strategies previously used in ACCESSCare. Potential participants will be recruited through a) national community routes and b) referral from NHS services. Sampling: Up to 40 purposively sampled patients to achieve data saturation. Interviews with informal caregivers Inclusion criteria: 18 years or over; informal caregiver of LGBT person with serious illness. Exclusion criteria: unable to give informed consent; too frail, unwell or distressed to participate. Sampling: Up to 20 purposively sampled caregivers. Interviews with Multi-professionals Inclusion criteria: multi-professionals (doctors, nurses, social workers) from ICU, respiratory, oncology, neurology, cardiology, renal, liver clinics; GPs from the London area. Sampling: Up to 30 purposively sampled multi-professionals. Data collection Semi-structured topic guide; refined with successive interviews. Analysis Inductive thematic analysis of verbatim transcripts, organising data into discrete topics for inclusion in resource development. Data will be analysed as an integrated dataset using all three samples to build the coding frame within NVIVO, with second researcher double coding a sample of 5 transcripts. Development, field-testing and delivery of guidance Procedure Following development and testing procedures from our patient-focused resource (ACCESSCare), we will develop a resource for clinicians informed by the interview data. The target audience will be specialists dealing with serious illness and Primary Care, with relevance across all health and social care. The thematic analysis findings will be used to map the content of the resources, ensuring it represents patients and caregivers preferences, and reflects professionals expressed educational needs. The resource will address a) the importance of sexual identity and gender history for person-centred care; b) examples of poor/good practice from patient and caregiver perspectives; c) common concerns and successful ways of working; d) recommendations for practice in terms of communication, assessment, care, family inclusion, and data recording. Resource refinement procedure Content will be refined by our Steering Group and community groups (using partner HERO s online community consultation methods), and cognitive interviews with n=5 clinicians.

Lay abstract: What is the problem we want to improve? Lesbian, gay, bisexual and/or trans (LGBT) people have worse health and poorer health care experiences, compared to heterosexual and cisgender people (those whose gender identity is the same as their biological sex at birth). We recently found that LGBT people facing advanced illness had poor experiences of care. We shared this information with health professionals around the UK, who told us they need guidance on having conversations with LGBT people about sexuality and gender history. They want to deliver best care to LGBT patients and those close to them. What is the study planning to find out? We will ask LGBT people with serious illness, their carers (partners, friends, family) and health professionals, how best to have conversations about being LGBT in the context of poor health. We will ask them how they would like to be asked, what words they prefer, and how they would like this information to be kept and shared. We will also ask their carers how they can best be included in discussions and decisions. We will ask health professionals what their challenges are in having these conversations, and how guidance can be best provided. How will the study be run? We will interview LGBT people with serious illness, their carers and health professionals. What will we do with the findings from the study? We will use the findings to develop guidance and propose mechanisms for recording information aimed at professionals, and this will be provided online. The guidance will ensure patients and caregivers have a choice about information sharing, and that it is done in the most acceptable ways. We will share this through existing training courses, a seminar, workshops at medical and nursing conferences, and social media. PATIENT AND PUBLIC PARTNERS CONTRIBUTED TO THIS SUMMARY

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE