Consultation for the English End of Life Care Strategy Equality Impact Assessment noted that in terms of quality of end of life care, LGBT people were most at risk of discrimination . While LGBT and heterosexual individuals may share end of life care experiences and concerns, there are likely to be separate issues that need to be addressed among LGBT people.
The oldest generations of LGBT people grew up at a time when coming out resulted in serious negative repercussions including job discrimination, family disapproval, psychiatric interventions, criminalisation, and various other forms of prejudice or intolerance. While there have been significant social and legal changes in more recent times, many older LGBT people may still be very private about their sexual orientation and gender identity and reluctant to disclose important aspects of their identity. Although there is an increasing body of work by academics and community organisations looking at the needs of older LGBT people (see also previous work by ILC-UK [2, 3]), to date little work has investigated access to and provision of services at the end of life.
End of life care is generally understood as care delivered to people in the last year of life but it also encompasses later life experiences and thinking about mortality – issues that may become more relevant as people age. End of life care needs are most common among older age groups (whether as patients or carers), but we lack understanding of the diverse range of needs of ‘older people’. In particular, there remains a need to better understand the health and social care needs and experiences of older LGBT people, in order to better tailor and deliver services, particularly in this case towards the end of life.
To this end we at University of Nottingham are looking for volunteers for our research project to help us understand and address some of these issues. We are looking for participants who meet the following criteria:
- Currently live in the UK
- Identify as lesbian, gay, bisexual and/or trans, or their gender identity and/or gender expression is different from the one assigned at birth
- Are aged 60 or over OR are under 60 but have a partner or a person for whom they care who identifies as lesbian, gay, bisexual and/or trans and is aged 60 or over.
We hope that the project findings will have an impact on present and future health and social care provision and so we would very much appreciate your help in reaching people who meet these criteria.
The study will run for two years (to Aug 2014) and we will be capturing people’s experiences in two ways:
- A UK-wide survey of LGBT older people’s end of life experiences and care needs
- In-depth interviews with a sub-sample of the survey respondents (up to 60 people) to examine in-depth issues highlighted from the survey.
More information about the study and the research team can be found at http://www.nottingham.ac.uk/nmpresearch/lastouting/home.aspx or please email the research team (Meiko Makita and Anne Patterson) for more information or if you are interested in participating at firstname.lastname@example.org
Dr. Kathryn Almack (Lead Researcher, Nottingham University)