Troubling meanings of family and competing moral imperatives in the family lives of young people with a parent who is at the end of life

This article draws on a narrative study of young people with a parent who is at the end of life to examine how family lives are troubled by life-limiting parental illness. Young people struggled to reconcile the physical and emotional absence of family members with meanings of ‘family’; the extent to which young people could rely on family to ‘be there’ in these troubling circumstances was of practical, emotional and moral significance. Our discussion is situated in the context of an English end of life care policy predicated on the ideal of a good death as one that takes place at home accompanied by family members. We explore how the shift away from family as a site for nurturing children towards family as a space to care for the dying is experienced by young people, and consider how these competing moral imperatives are negotiated through relational practices of care

Gaining consensus on family carer needs when caring for someone dying at home to develop the Carers' Alert Thermometer (CAT): a modified Delphi study

Aim To report a multi-phase modified Delphi study conducted with carers and professionals to identify the priority areas for inclusion in an alert screening tool for carers providing support to someone dying at home. Background Internationally, there is a growing emphasis on increasing choice for patients who wish to die at home which relies heavily on care provided by the unpaid family carers. Family carers can have high levels of unmet needs comprising their psychological and physical health and their ability to provide effective care and support. Development of an alert tool to identify carers' needs in everyday practice required identification and consensus of the priority areas of need for inclusion. Design Multi-phase modified Delphi study and instrument development. Method Qualitative and quantitative data collection took place between 2011–2013 with 111 carers and 93 professionals to identify carers' needs and gain consensus on the priority areas for inclusion in the alert tool. An expert panel stage and final evidence review post-Delphi were used. Results The Delphi panels had high levels of agreement and consensus. Ten areas of carer need across two themes of ‘the current caring situation’ and ‘the carer's own health and well-being’ were prioritized for inclusion in the alert tool. An optional end-of-life planning question was included following the final stages. Conclusions The results provide evidence of carers' needs to be assessed, areas for consideration in the education of those who support carers and someone dying at home and targeting of services, while demonstrating the usefulness and adaptability of the Delphi method