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

虽然被视为专业人员的领域，但生命的终结和相关的护理服务是高度心理化和个性化的，未能将人视为存在于家庭等关系结构中的固有社会存在。这种优先考虑忽略了家庭作为一个照顾网络，死亡的内在关系，特别是对于这个项目，忽视了家庭结构的日益多样化。认识到家庭结构的日益异质性是由酷儿社区带头的，其中“酷儿”被理解为包含LGBTQ+偏离“规范”的关系方式。在这个社区的关系结构的特点是“家庭的选择”，这概念化的家庭作为一个故意的社会社区没有明确的重点生物关系。鉴于其起源于1980年代艾滋病毒/艾滋病流行期间的LGBT社区，有人认为“选择家庭”一词是由互助和照顾的叙述定义的。尽管有其起源，但批判性地审查在生命结束时构成选择家庭的内容的强有力的研究很少，现有的研究加强了关于二元，同居和抚养子女关系的异性恋假设，通常是为了支持婚姻平等，获得IVF和收养的运动，即家庭生活的“早期”。当一个家庭成员死亡时，人们对被选中的家庭几乎一无所知，特别是在酷儿社区，临终研究也是通过类似的异性恋规范透镜进行的。这是尽管有证据表明，选择的家庭可能会提高同性恋者的健康和福祉，以及医疗保健中的单一近亲的概念是不合适的。姑息治疗中缺乏研究证据尤其成问题，因为《2022年卫生和护理法》规定，综合护理委员会有法定要求支持照顾垂死者的家庭，并考虑到同性恋社区在医疗保健中经常面临的不平等和歧视，这导致对非正式护理网络的依赖增加。这种歧视反映在，并加剧了，死亡和垂死的文学，政策和实践中的酷儿体验和视角的无形性更广泛。这个博士将解决这一知识差距，提供洞察力和证据，告知政策和实践的转变，减少现有的不平等在临终关怀和丧亲支持酷儿人口。该研究的目标是批判性地研究“家庭”目前是如何概念化的，并在姑息治疗服务中得到支持，以确定酷儿选择的家庭是如何在英国组织和生活的，并了解酷儿家庭在生命结束时照顾家庭成员的经历，及其与姑息治疗服务的相互作用。拟议的研究将使用一个解释性的顺序混合-方法设计和基于酷儿现象学的方法论。酷儿现象学承认并挑战了固有的白色、西方和异性恋的透镜，并促进了不使酷儿体验"正常化"的方法论的发展。至关重要的是，这是一个关键的利益相关者谁将饲料到research.The研究设计的各个阶段创建一个咨询小组，包括出版和政策文献的系统性审查，以了解“家庭”是如何在姑息治疗目前概念化，并确定在英国酷儿选择家庭的不同结构的调查。我们会发展一套崭新的方法，从调查中有目的地选取整个家庭进行访问，以阐释他们照顾临终家庭成员的经验。

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.