End-of-life care for adults with long-standing physical disability from the perspectives of bereaved family members: a qualitative exploratory study

Abstract

This qualitative exploratory study provides insight into experiences of end-of-life care for adults with long-standing physical disability from the perspectives of bereaved family members. The challenges and positives for their family member at end of life, as well as their own support needs were explored. In-depth semi-structured interviews were conducted with four family members: three mothers and a sister. Three themes were constructed from the data: Firstly, the need for a ‘united front’, regarding the importance of supportive relationships and communication between professionals and family members. Secondly, issues around responsibilities for care leading to fragmented care and skill gaps in professionals working at the intersection of disability and end-of-life care, and thirdly, advocacy and having a voice, regarding the need for professionals to recognise and value the important role of family members. These findings underscore the necessity for further research to understand the needs of this cohort and their families. Points of interest Little is known about the experiences of individuals with long-standing physical disability at end of life. This study used a qualitative methodology to investigate the experiences of individuals with long-standing physical disability at end of life, through talking to their bereaved family carers. The findings suggest that regardless of where end-of-life care takes place, the type of disability or the age of the person, what is important is the way care is provided. Family carers valued open and clear communication between health professionals, themselves, and their family member with disability, coordinated care provided by skilled staff, and care in which they feel their role is included and valued.