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

在很大程度上被认为是专业人士的领域，生命的终结和相关的护理服务是高度心理化和个性化的，没有考虑到人们是存在于关系结构（如家庭）中的固有的社会存在。这种优先考虑忽视了家庭作为一个护理网络，死亡的内在关系，特别是在这个项目中，忽视了家庭结构日益多样化。酷儿群体率先认识到家庭结构的日益异质性，在这里，“酷儿”被理解为包括LGBTQ+偏离“规范”的关系方式。这个社区的关系结构以“选择家庭”为特征，它将家庭概念化为一个有意识的社会社区，没有明确关注生物关系。鉴于它起源于20世纪80年代艾滋病毒/艾滋病流行期间的LGBT社区，有人认为，“选择的家庭”一词是通过互助和关怀的叙述来定义的。尽管有其起源，但对生命终结时所选择的家庭构成进行批判性考察的有力研究很少，现有的研究强化了关于二元、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、获得体外受精和收养的运动，即家庭生活的“早期”。当一个成员即将死去时，人们对被选中的家庭几乎一无所知。临终研究，尤其是对酷儿群体的研究，也是通过类似的异性恋规范视角进行的。尽管有证据表明，选择的家庭可能会提高酷儿个体的健康和福祉，并且在医疗保健中单一近亲的概念是不合适的。考虑到《2022年保健和护理法》规定综合护理委员会有法定要求支持照顾垂死之人的家庭，考虑到酷儿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，因此在缓和医疗方面缺乏研究证据的问题尤其严重。这种歧视反映在更广泛的死亡和临终文学、政策和实践中，酷儿的经历和观点被忽视，这也加剧了这种歧视。该博士学位将解决这一知识差距，为政策和实践的转变提供见解和证据，以减少对酷儿群体的临终关怀和丧亲支持方面存在的不公平现象。研究的目的是批判性地检查“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，以及他们与姑息治疗服务的互动。建议的研究将使用解释性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人、西方和异性恋的视角，并促进了不将酷儿经历“正常化”的方法论的发展。为此，至关重要的是建立一个由关键利益相关者组成的咨询小组，他们将参与研究的各个阶段。研究设计包括对已发表的和政策文献的系统回顾，以了解“家庭”目前如何在姑息治疗中概念化，并调查确定英国境内酷儿选择家庭的不同结构。将开发一种新的方法，对从调查中有意选择的整个家庭进行访谈，以阐明他们在生命结束时照顾家庭成员的经验。

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.