How are family caregivers of people with a serious illness supported by healthcare professionals in their caregiving tasks? A cross-sectional survey of bereaved family caregivers

Abstract

Background: Due to medical advances and an increasingly ageing population, the number of people living with a serious illness is rising. This has major implications for the burden on family members of assisting with care. Support of family caregivers by healthcare professionals is needed to ensure they can provide quality care for people with serious illness. Aim: To investigate how family caregivers of people with serious illness are supported by healthcare professionals in their caregiving tasks. Design/Participants: Population-based cross-sectional survey of bereaved family caregivers of people with serious illness ( N = 3000) who cared for a person who had died 2–6 months before the sample was drawn (November 2019), as identified through three sickness funds in Flanders, Belgium. The survey explored support from healthcare professionals for family caregivers 3 months prior to bereavement. Results: Response rate was 55.0%. Most family caregivers received support from one or more healthcare professionals for family caregiving tasks, ranging from 71% for promoting social interaction to 95% for managing symptoms. The type of support mostly involved providing information. Use of palliative care services was the strongest predictor of such support across physical, psychosocial and practical tasks. Conclusion: Most family caregivers of those with serious illness get some form of support from healthcare professionals for their tasks. However, an empowering support strategy for example one aimed at increasing self-efficacy of the family caregiver is rare and end-of-life communication between healthcare professionals and family caregivers needs improvement.

‘Mum, I think we might ring the ambulance, okay?’ A qualitative exploration of bereaved family members’ experiences of emergency ambulance care at the end of life

“…This is particularly important given the ongoing challenges in providing palliative care out of hours and at weekends. 21,22 The uncertainty around disease trajectories at the end of life can have an adverse impact on bereaved family members' experiences. 23 A key finding from this study was the role of emergency ambulance responders in supporting family with unexpected changes in the ill person's medical condition.…”

“…This is particularly important given the ongoing challenges in providing palliative care out of hours and at weekends. 21,22…”

Supported: Supporting, enabling, and sustaining homecare workers to deliver end-of-life care: A qualitative study protocol

“…How those services may interact with HCWs working alongside other practitioners is an aspect that will be discussed in the interviews where appropriate. We also acknowledge the significant number of carers, such as family and friends, who provide care [33], and are often not considered when training for HCWs is developed; and incorporate this often overlooked perspective [34] However, there are considerably greater numbers of studies focusing on family carers and their needs [35][36][37]. As such this study focuses on the provision by HCWs which does not receive as much attention.…”