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ACCESSCare for lesbian, gay, bisexual and trans people facing advanced illness and bereavement
What is ACCESSCare?
This project (2014-2016), led by Dr Richard Harding, and funded by Marie Curie, aimed to improve demand for and supply of palliative care for people who identify as lesbian, gay, bisexual and/or trans (LGBT) and are in the later stages of a life-limiting illness.
Research has shown that people who identify as LGBT, and their significant others, may not receive the care they need when facing a life-limiting illness, despite an increased risk of certain cancers (Harding et al. (2012) Journal of Palliative Medicine). The ACCESSCare project was designed to address this inequity through:
• The development and dissemination of evidence-based mass media resources co-designed with the LGBT communities to increase the demand for appropriate end-of-life care
• The improvement of supply of appropriate end-of-life care through development of training resources for integration within existing end-of-life care curricula for health care professionals
The project involved in depth qualitative interviews with 40 people from across the UK who identify as LGBT and are in the later stages of a life-limiting illness, their informal caregivers (partners, friends or relatives) as well as with bereaved caregivers of people who died from a progressive illness or condition. The ACCESSCare study commenced in May 2014, and recruitment closed in January 2016.
Update: June 2016
Impact on Policy
Findings from the ACCESSCare study informed the recent Marie Curie publication ''Hiding Who I Am'': the reality of end-of-life care for LGBT people', and the Care Quality Commission Thematic Review (CQC) ‘A different ending – addressing inequalities in end-of-life care’.
ACCESSCare was the subject of a parliamentary question to which the ACCESSCare team and End-of-Life Care Lead for the Department of Health developed a joint response highlighting the importance of the findings from the ACCESSCare study.
Dr Richard Harding also presented at the Welsh Assembly regarding the findings of the ACCESSCare study in November 2016, and at a parliamentary event in Westminster, in December 2016.
Update: September 2016
Peer Reviewed Journal Article
As part of the ACCESSCare study, we recently completed a systematic review of the bereavement experiences of LGBT people who have lost a partner. The paper was selected as Editor’s Choice in the September edition of Palliative Medicine. The paper is open access, and can be downloaded from the Palliative Medicine website.
We have also written a blog explaining the background to the paper, which can be accessed via the European Association for Palliative Care website, as well as a blog about our successful community engagement strategy for Marie Curie.
Update: May 2017
The main paper from ACCESSCare has been published this month. It is freely available online from the Palliative Medicine website. It highlights the additional barriers and stressors that LGBT people may experience, when facing advanced illness and in bereavement. From the interviews we have identified 10 simple recommendations for individual healthcare professionals and healthcare institutions to improve care for LGBT people.
Resource for LGBT People
The findings from the literature reviews and the qualitative interviews have been used to develop a mass media resource for the LGBT communities. The resource is designed for people who identify as LGBT and are facing advanced illness, and those close to them (partner, friends or relatives). The booklet aims to help individuals to think about:
• Why sexual orientation or gender identity may be important in relation to care needs, and preferences
• The care individuals are entitled to receive
• What to do if you think you have been discriminated against, because of your sexuality or gender identity
• Where to go for more help and information
The resource is freely available for download in print (for you to print yourself) and online versions, both of which have links to further support and guidance.
LGBT Resource – Print
LGBT Resource - Online
Training and education
Since the completion of the study the ACCESSCare study team have presented the findings to over 1000 healthcare professionals from across the UK working in hospitals and hospices, health services researchers and policy makers.
ACCESSCare Sister Study in Zimbabwe
Since 2014 the ACCESSCare team have been supporting a sister project in Zimbabwe examining healthcare and palliative care experiences of LGBTI (lesbian, gay, bisexual, trans and intersex) people and sex workers. The first paper from this study is published open access in BMJ Global Health.
We are delighted to say that we have been awarded funding by Marie Curie to undertake a new study within the ACCESSCare research stream:
'ACCESSCare-B - Bereavement outcomes for LGB (lesbian, gay, or bisexual) and heterosexual bereaved partners: a population based, cross sectional mixed methods study.' This study will commence in June 2017.
Want to find out more?
For further information about ACCESSCare, please see the video below, or get in touch with the ACCESSCare research team through the dedicated e-mail address email@example.com or by telephone on 020 7848 5521.
Dr Richard Harding talking about the ACCESSCare project: http://www.youtube.com/watch?v=QHEeSag2y40
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