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  • ACCESSCare II

ACCESSCare II

This project, led by Dr Richard Harding and Dr Katherine Bristowe, Kings College London ACCESSCare II and funded by Marie Curie, aims to study bereavement outcomes for lesbian, gay and bisexual (LGB) and heterosexual partners using a population-based, cross- sectional, mixed methods study.

Bereavement impacts heavily on those closest to the deceased, with caregivers 20-50 per cent more at risk of mental health problems than non-caregivers. Bereaved partners are less likely to seek medical attention and have increased odds of worsening/new illness and mortality.

Lesbian, gay, and bisexual (LGB) people constitute minority groups with specific healthcare needs, including: greater all-cause mortality; higher rates of mental illness; more risk behaviours linked to discrimination; increased risk of life-limiting illnesses; increased isolation; and potentially increased palliative care needs. Partners are therefore more likely to be bereaved, and, with higher rates of mental illness, may have worse bereavement outcomes.

Despite protection under the UK Equality Act (2010), experiences of discrimination for LGB people are common in healthcare, resulting in reluctance to access healthcare and share sexual orientation with healthcare professionals. The need to end health disparities/discrimination for LGB people was highlighted in a recent Lancet Editorial.

Many LGB people also expect discrimination in end-of-life care and in bereavement. Our recent systematic review described additional barriers/stressors in bereavement, and an absence of quantitative studies of bereaved LGB partners since 1990s and beyond the context of HIV/AIDS. With poorer mental health outcomes, increased isolation and experiences of discrimination, we hypothesise that LGB bereaved partners have worse bereavement outcomes than heterosexual partners.

Project timeframe

The ACCESSCare study commenced in June 2017 and will end in September 2019.

Project aims

The project aims to:

  • test the hypothesis that among bereaved partners, prevalence of complicated grief is higher among LGB than heterosexual people;
  • examine whether factors (i.e. isolation, discrimination, caregiver burden) explain any differences in outcomes between LGB and heterosexual people;
  • compare access to/experiences of bereavement support in LGB and heterosexual people;
  • compare patterns of health/social service utilisation and informal care provision of LGB and heterosexual bereaved people;
  • compare health/social service utilisation, bereavement outcomes and needs of LGB and heterosexual people whose partner has died a sudden death compared to death from life-limiting illness.

Project findings and impact

Findings will inform national bereavement support provision, by improving understanding of factors associated with poorer grief outcomes. We will develop healthcare professional guidance, policy documents and targeted supportive materials for LGB and heterosexual communities.

Research team

Professor Katherine Johnson

Output

Partners

Dr Richard Harding, Kings Coleege London

Dr Katherine Bristowe, Kings College London

Marie Curie Cancer Care

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