This paper explores how young people who are living with a parent who is dying talk about the future. Drawing on a qualitative, interview study, I argue that young people are able to move imaginatively beyond the death of a parent, and in doing so, to maintain a sense of biographical continuity. While thinking about the future, most were able to generate an alternative to the ‘harm story’ typically associated with parental loss. Furthermore, the facility to engage with parental absence in the present enabled young people to make sense of living with dying, and gave meaning to their imagined futures. These findings suggest that young people's narratives of the future may act as a symbolic resource to draw on, albeit one requiring adequate material and social resources to construct. The paper extends the notion of continuing bonds derived from post-bereavement accounts to suggest that relational experiences of the dead begin prior to bereavement, and may facilitate everyday living in anticipation of significant loss. Enabling young people to imaginatively explore the future may support them in getting by when they are living in these difficult family circumstances.
In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia living in the community. Semi-structured qualitative interviews were carried out in England with 14 family care-givers (FCGs) recruited from a single private home care provider. A thematic analysis of the data was undertaken using the constant comparative method. In every instance, it was FCGs who initiated domiciliary care for the person with dementia, highlighting ambiguity about who is the ‘client’. Rather than focusing on the HCWs’ work in undertaking practical tasks and personal care, respondents prioritised HCWs as companions, providing emotional and social support for their relatives. From an organisational perspective, respondents valued the capacity of the provider to deliver a consistent, personal, reliable and punctual service. These attributes were important in supporting their relative's agency and dignity. Respondents described HCWs engaging in skilled and sensitive communication with clients but considered ‘character’ and ‘innate’ caring abilities to be more important than those derived from training. The results highlight the need to acknowledge the family, rather than the individual client, as the functioning unit of care, and to recognise the highly skilled communicative and emotional work undertaken by HCWs.
CONTEXT: Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life, but make it possible for many patients to be cared for, and to die, at home. Moreover, death increasingly occurs in late old age and after a prolonged period of co-morbidity and/or frailty. This has far reaching consequences for the way that professional services are resourced and organised, and for the informal carers who are often responsible for providing the greater part of patient care, including management of complex medication regimes.
OBJECTIVES: To explore the literature focused on family caregivers' experiences of medications management for patients being cared for and dying at home.
METHODS: This literature review takes a Critical Interpretive Synthesis approach to the review of 15 identified papers.
RESULTS: Findings show that family caregivers can struggle to manage medications for someone who is dying at home, yet there is an expectation that they will take on these roles and they are often judged by professional standards. Five key themes identified particular issues around administration, organisational skills, empowerment, relationships and support.
CONCLUSION: As increasing demands are placed on family caregivers, there remains limited acknowledgement or understanding of the challenges they face, how they cope, or could be best supported. Alongside training, family caregivers need access to 24hrs support and medication reviews to rationalise unnecessary medications. Furthermore, the ethical challenges arising from administering medicines at the end of life also need to be acknowledged and discussed.
OBJECTIVE: Living with a parent who is approaching the end of life is profoundly troubling for young people. Research indicates that family communication about life-limiting parental illness can influence how young people manage living with dying. In particular, open communication between family members has been shown to be helpful. This paper reports on a study of young people's experiences of family interaction when a parent is dying and considers the practice of open communication in the context of young people's involvement in giving and receiving family care. METHODS: A narrative approach was employed based on in-depth semistructured interviews with 10 young people (aged 13-21) living with a parent thought to be in the last year of life.
RESULTS: Young people's attitudes toward open communication between family members were more ambivalent and ambiguous than previous research suggests. Parental attempts at open communication were sometimes overlooked by young people, indicating that there may be differences between knowledge given and young people's acknowledgment of sensitive information. Some young people valued open communication as a signifier of the close relationships between family members, while others wanted to exercise more control over what they knew, when, and how. Young people's accounts challenged the positioning of young people as passive recipients of information. Young people were active in shaping family communication in their everyday lives, and deliberative acts of speaking or remaining silent were one way in which young people exercised care for themselves and others.
SIGNIFICANCE OF RESULTS: This study extends research on communication within families when a parent has a life-limiting illness and suggests that supporting young people's agency in determining how they receive information may be more beneficial than promoting open communication between family members.