Improving care for lesbian, gay, bisexual and trans* people at the end of life

Marie Curie research

ACCESSCare - a project for lesbian, gay, bisexual and/or trans* (LGB and/or T) people approaching the end of life - launched in 2014 after receiving funding from the Marie Curie Research Programme. The project aims to improve care for sexual and gender minorities at the end of life and is achieving high levels of community engagement.

Previous research has shown that despite an increased risk of certain cancers, LGB and/or T people may not access the care and support they need when facing a terminal illness (Harding et al. 2012).

Our ACCESSCare project at King’s College London is interviewing people who identify as LGB and/or T and are facing a terminal illness, along with their informal carers (partners, friends, family), and bereaved carers. The findings of these interviews will be used to create online and print resources for patients and those close to them, and training and resources for healthcare professionals.

Over recent years, researchers have increasingly recognised the importance of engaging with public and community groups. While many healthcare research projects recruit through medical teams alone (relying on referral to the study by clinicians), we recognised that this would not be sufficient for ACCESSCare.

If people did not feel comfortable identifying as LGB and/or T with their medical team, then they would not be made aware of the study. For this reason, we chose to have a parallel strand of recruitment through community groups and social media to enable self-referrals.

We’ve worked closely with GMFA/HERO, the gay men’s health charity, both in the design and running of the study. This has helped us engage more broadly with LGB and/or T media including Pink News and Diva. We have also used social media, blogs and online articles to spread the word and a number of high-profile individuals within the LGB and/or T communities have tweeted about ACCESSCare.

We also recognised the importance of engaging with the communities through more traditional routes, to reach those who perhaps may not access social media. For this strand we have relied largely on word of mouth, making new contacts and sharing resources in newsletters and community fora. These have included LGB and/or T community and support groups such as the National LGBT network, Opening Doors London, the LGBT foundation Manchester and the Older Lesbian and Gay Association, to name just a few.

Throughout the project, we have been overwhelmed by the level of generosity and support community groups have offered. We’re delighted that the importance of this area of research is being discussed openly.

The ACCESSCare study is still recruiting (till the end of 2015), so please do spread the word among any community or social groups. For more information see our website, or contact our dedicated project team on 020 7848 5521, or @ACCESSCare_CSI.

Trans* is used as an umbrella term to describe any person whose gender identity differs from the sex they were assigned at birth, including, but not limited to, transgender, gender fluid, non-binary, genderless, third gender, bigender, as well as trans man and trans woman.