The Last Outing: exploring end of life experiences and care needs in the lives of older lesbian, gay, bisexual and trans people

Project Duration

September 2012 – December 2014

Funder

Marie Curie Cancer Care

Aims

1. To identify particular needs and preferences salient to sexual/gender orientation relating to EoLC (End of Life Care) as identified by LGBT (lesbian, gay, bisexual and transgender) elders
2. To examine ways in which sexual/gender orientation may impact on experiences of EoLC for LGBT elders
3. To explore LGBT elders' familial and friendship networks and the ways in which these personal networks may influence later life experiences towards and at end of life
4. To identify recommendations for good practice in EoLC issues addressing issues for LGBT elders

Methods

A mixed methods study with three phases. 

1. A survey (n = a minimum of 300) of older LGBT people's (aged 60 and over) experiences and needs in relation to EoLC across the UK (England, Wales, Scotland and Northern Ireland). Given the absence of official data, it is not possible to determine the relevant sample size or to identify the main outcome of interest. We therefore plan to achieve a minimum sample of 300 but will continue to recruit until a specified cut off date. The survey includes sets of closed questions (with some spaces for participants to add further detail if they wish to) to explore: perceptions of the importance/influence of sexual orientation/gender identity in the participant's life generally, in their experiences of health and social care and relating to thinking about /planning for EoLC. The survey tool will be piloted (to consider issues such as burden on participants). It will then be revised accordingly. 
2. In-depth interviews with a sub-sample of the survey respondents (n = up to 60) to examine issues highlighted from the survey. Survey respondents will be asked to indicate if they would be willing to take part in an interview and if so, to provide contact details which will be kept separate from their completed survey to ensure anonymity of their survey response. Themes addressed in the interviews will include: attitudes and beliefs about EoLC issues, concerns and/or experiences of caring or receiving care at end of life, needs for information and support. The interview will incorporate 'eco-maps' - a participatory visual technique to map out and prompt discussions about respondents' supportive networks. Interviews will take part in respondents' home or place of their choice. Informed consent will be sought and the School's lone researcher protocol will be followed. 
3. A public engagement workshop to feedback findings and to collaboratively develop recommendations to contribute to outcomes of the study.

Stage of Development

The project is now complete with and end date for a final report to be submitted to the funders by March 2015.

We are working to feed our findings into national consultations currently underway, which are seeking to improve end of life care:

Kathryn Almack is part of an external advisory group which CQC (Care Quality Commission) have set up to provide expert input and critical comment into their ‘Inequalities and Variations in Provision of End of Life Care’ themed programme.

We have also been invited to feed into the Government review of choice in end of life care. The review is being undertaken by an independent programme board, chaired by Claire Henry, the Chief Executive of the National Council for Palliative Care. The information gathered will outline the kinds of choices that people would like to be able to make at the end of life and information about the funding, systems and processes that would be needed to enable choices to be acted upon. This is also open to members of the public – to find out more visit the Choices offers Consultation page.

We had funding to be part of the 2014 Economic and Social Research Council Festival of Social Sciences and held an event in Nottingham, 4 November 2014:

Ageing and care for older LGBT people: Screening of critically acclaimed Documentary Gen Silent, which explores real-life issues facing older LGBT people in later life and towards the end of life. This was followed by a Q&A discussion panel after the film to explore the UK context of issues raised in the documentary.

We have presented findings from the project at numerous conferences and Kathryn is presenting at forthcoming conferences in 2015 including:

International Association of Gerontology and Geriatrics 8th European Congress, Dublin. Symposium on LGBT ageing co-convened by Dr Kathryn Almack, University of Nottingham and Professor Gloria Gutman, Simon Fraser University, Canada

Queer Kinship and Relationships International Conference. Zalesie, Masuria, Poland. Prize for best paper: “I have no wish to be at the tender mercies of a homophobic carer/service”: exploring end of life experiences and care needs in the lives of older lesbian, gay, bisexual or trans (LGBT) people. Royal College of Nursing (RCN) Annual International Nursing Research Conference and Exhibition, University of Nottingham. April 21st, 2015.

The final report (PDF) for the project is now available to view/download.