Caring to the end: exploring the family lives of young people with a parent at the end of life

This thesis reports on an in-depth, qualitative study of the family lives of young people with a parent at the end of life. Family is an important concept in end of life care; the support and comfort of family members is thought to be valued by people at the end of life, and the presence of family is widely understood as essential to a ‘good death’. However, attempts to interrogate what is meant by ‘family’ in these circumstances have been limited. Research studies in psycho-oncology and health sciences have tended to substitute one adult as a proxy for family. Consequently, little is known about young people’s experiences of living with dying. This study employed a multiple perspectives methodology to privilege the views of young people whilst taking into account the familial and wider social context in which young people live. The study is based on semi-structured interviews with ten young people (aged 13-21) with a parent in the last year of life. In addition, five family members were interviewed, each of whom was nominated by a young person. Young people’s accounts were analysed using the voice-centred relational method, a narrative approach involving multiple readings of a transcript to illuminate different aspects of the young person’s account. The narratives of family members were used to support an analysis of how young people understand and experience the relational constructs of family and care. The results and discussion of the study findings are presented according to the three major subject areas of family, care and resources. The meaning, practice and moral significance of family and of care in the everyday lives of young people are examined in the light of wider social discourses on young people’s involvement in care and on ‘doing family’, particularly in the context of end of life care. Young people in the study talked about family in terms of presence, closeness and care; meanings that conflicted with their everyday experiences of absence, distance and loss. The acknowledgement that some family members were unwilling or unable to be there was troubling for young people and disrupted their sense of belonging to a proper family. In particular, the limited ability of parents to be there as a consequence of parental illness challenged the moral imperative for family to put the needs of children first. Instead, the need to provide care for a parent presented families with a new moral imperative to care for the dying. Young people wanted to be there for their parent; providing care was thus one response to getting on with everyday life. Furthermore, in caring for others, young people also cared for themselves by ensuring that their parent remained with them for as long as possible. Friends were named as the most important source of support for young people. Many young people had little contact with service providers, and those who had received support were sometimes ambivalent about its effectiveness. Most young people were able to articulate a future for themselves beyond the death of their parent, and this future narrative contributed a sense of meaning and purpose to their lives in the present. This study adds to current understandings of living with a parent at the end of life by applying a sociological lens to draw attention to the interpersonal and wider social factors that impact on young people’s experiences of living with dying. I conclude that, whilst living with dying is undoubtedly troubling at times, there is also a mundanity seldom acknowledged in the literature in that young people accommodated their experiences in and through the everyday routines and practices of family life. Research, policy and practice in end of life care may benefit from more emphasis on the relational and often lengthy experience of living with dying, and on factors that may help to promote a good dying for all family members, including young people