Death and dying in the queer family: A mixed methods study

Largely regarded as the domain of professionals, the end of life and associated care services are highly psychologised and individualised and fail to consider people as inherently social beings existing within relational structures such as family. This prioritisation overlooks the family as a network of care, the inherent relationality of dying and, specifically for this project, neglects the growing diversification of family structures.

Recognising the increasing heterogeneity of family structures has been spearheaded by the queer community, where 'queer' is understood as encompassing LGBTQ+ ways of relating that deviate from the 'norm'. Relational structures in this community are characterised by 'families of choice', which conceptualises family as an intentional social community without explicit focus on biological relationships. Given its origins in the LGBT community during the 1980s HIV/AIDS epidemic, it has been argued that the term 'chosen family' is defined by narratives of mutual aid and care. Despite its origins, robust research that critically examines what constitutes chosen family at the end of life has been minimal, with existing research reinforcing heteronormative assumptions about dyadic, cohabiting and child-rearing relationships, often in the support of campaigns for marriage equality, access to IVF and adoption, namely the 'early years' of family life. Virtually nothing is known about chosen families when a member is dying.

End-of-life research, in the queer community specifically, has been conducted through a similarly heteronormative lens. This is despite evidence that chosen family may enhance the health and wellbeing of queer individuals and that the conceptualisation of singular next of kin within healthcare is inappropriate. Such a dearth of research evidence within palliative care is particularly problematic given that the Health and Care Act 2022 stipulates that Integrated Care Boards have a statutory requirement to support families who are caring for a person who is dying and considering the inequities and discrimination often faced by the queer community within healthcare, that result in an increased reliance on informal care networks. This discrimination is reflected in, and compounded by, the invisibility of the queer experience and perspective within death and dying literature, policy and practice more broadly.

This PhD will address this knowledge gap, providing insight and evidence to inform a shift in policy and practice that reduces existing inequities in end-of-life care and bereavement support for the queer population. The study objectives are to critically examine how 'family' is currently conceptualised and supported in palliative care services, to determine how queer chosen families are organising and living within the UK and to understand the experiences of queer families caring for a family member at the end of life, and their interaction with palliative care services.

The proposed study will use an explanatory sequential mixed-methods design and a methodology based on queer phenomenology. Queer phenomenology acknowledges and challenges an inherent white, western and heteronormative lens and promotes the development of methodologies that do not 'normalise' the queer experience. Essential to this is the creation of an advisory group of key stakeholders who will feed into all phases of the research.

The research design includes a systematic review of published and policy literature to understand how 'family' is currently conceptualised in palliative care and a survey determining diverse structures of queer chosen families within the UK. A novel methodology will be developed for interviewing whole families purposively selected from the survey to elucidate on their experience of caring for a family member at end-of-life.