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ACCESSCare

ACCESSCare Resources & Publications

Findings from the ACCESSCare projects are contributing to changes in practice and policy. Outputs are detailed under the headings below.

Peer-reviewed journal articles

This paper from the ACCESSCare Zimbabwe study is freely available via open access from the Palliative Medicine website, HERE.

It highlights that minimal understanding of and access to, palliative care increased the risk of painful, undignified deaths. Also, discriminatory beliefs and practices from healthcare providers, family and community negatively affected those living with life-limiting illness, and their wishes at the end of life.

This is main paper from the ACCESSCare A study. It is freely available via open access from the Palliative Medicine website, HERE.

It highlights the additional barriers and stressors that LGBT people may experience, when facing advanced illness and bereavement.

The interviews informed 10 simple recommendations to improve care for LGBT people

This systematic review of the bereavement experiences of LGBT people who have lost a partner is freely available via open access on the Palliative Medicine website, HERE.

The review informed the novel ‘Acceptance–disclosure model of LGBT bereavement experiences’. Further explanation is within the full article, or summarised in this blog.

The paper was selected as Editor’s Choice in the September edition of Palliative Medicine, and has informed the ACCESSCare B study.

The first paper from the ACCESSCare Zimbabwe interview and focus group study is freely available via open access on the BMJ Global Health website, HERE.

It describes the barriers to basic healthcare due to healthcare professionals allowing their personal attitudes to impact the care they provided. Overt discrimination and exclusion from care was evident, while conforming to sexual norms enabled some to access the care they needed.

A set of key policy recommendations were made.

This is the first paper informing the ACCESSCare stream of work. It is freely available via open access on the Journal of Palliative Medicine website,  HERE.

It appraised evidence on needs, experiences, and preferences for palliative and end-of-life care amongst lesbian, gay, bisexual and transgender people.

It highlighted the needs of health care professionals to avoid heterosexist assumptions, and illuminated requirements for research about the experiences of LGBT people to inform healthcare service improvements.


Blank space Resources for LGBT people

The ACCESSCare A study has been used to develop a resource for LGBT people who are facing advanced illness, and those close to them (partner, friends or relatives). It helps people to think about the importance of sexual orientation in this context. It covers topics such as the practical aspects, including entitlements, how to manage discrimination, and further support networks.

The resource is freely available in 2 formats, and both have details about further support and guidance:

  1. An online version
  2. An offline version for you to download and print

 


Blank space Informing vital reports on end-of-life care

Findings from the ACCESSCare A study informed two major reports, published in 2017:

 

1. The Marie Curie report, ''Hiding Who I Am'': the reality of end-of-life care for LGBT people, which explores why LBGT people experience significant barriers to getting palliative care when they need it.

 

 

2. The Care Quality Commission (CQC) conducted a thematic review of experiences of end of life care with a focus on people who may be less likely to receive good care, entitled ‘ A different ending – addressing inequalities in end-of-life care’. Here is the CQC summary of findings for LGBT people from this work.

 


Blank space Policy and parliamentary presence
  • In October 2018, the ACCESSCare teamsubmitted written evidence to the Women and Equalities Committee inquiry into: whether health and social care provision is adequate for LGBT people; whether discrimination is still occurring; and what more needs to be done to improve LGBT access to health and social care. It was published by the Committee in November, and can be linked to here. Alternatively, view it here:
  • Professor Richard Hardingpresented at a policy event at Westminster organised by Marie Curie in December 2016. He was supported by a panel of practitioners, academics and decision makers as well as trans activist, Jenny-Anne Bishop, to discuss the role everyone can play in improving end of life care for LGBT people. More detail on the policy work the  ACCESSCare A team have done with Marie Curie is available in the Marie Curie research impact report 2016/17,  'Delivering impact: palliative and end of life care research' (pp.20-22).
  • Professor Richard Hardingpresented at the Welsh Assembly regarding the findings of the  ACCESSCare A study in November 2016.
  • The ACCESSCare team and End-of-Life Care Lead for the Department of Health also developed a joint response highlighting the importance of the findings from the  ACCESSCare A study.
  • parlimentary question (#139) was asked to the Secretary of State for Health in 2016 regarding what steps had been taken to improve palliative and end-of-life care for LGBT people. ACCESSCare was raised in the answer as an important piece of research to inform ongoing work to reduce inequalities in access to care.

Blank space Training and education for healthcare professionals
  • Since the completion of the  ACCESSCare A study, the team have presented the findings to over 1,400 health and social care professionals from across the UK working in hospitals and hospices, health services researchers and policy makers.
  • The team have recently won a grant to develop ACCESSCare E: an e-learning course for health care professionals, based on the ACCESSCare research. WATCH THIS SPACE!

The  ACCESSCare B & ACCESSCare C studies will both deliver open access peer reviewed journal articles and learning resources for health and social care professionals and educators. The respective project pages have more information about what is planned.


Blank space Blogs

·  Palliative care for all: Meeting the needs of lesbian, gay, bisexual and/or trans* people was published on the European Association for Palliative Care website. It summarises the issues faced by LGBT people going through bereavement, and explains a helpful model of their experiences in this area.

·  Improving care for lesbian, gay, bisexual and trans* people at the end of life was published on the Marie Curie website, and provides an insight into the carefully considered and successful community engagement strategy used in ACCESSCare A.


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Want to find out more?

ACCESSCare_ContactUs-160x59For further information about the ACCESSCare projects you can explore this website or get in touch with the ACCESSCare team via e-mail: accesscare@kcl.ac.uk

 

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