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BMC Palliative Care
Published in: BMC Palliative Care 1/2016

Open Access 01-12-2016 | Research article

“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

Authors: Emily Harrop, Fiona Morgan, Anthony Byrne, Annmarie Nelson

Published in: BMC Palliative Care | Issue 1/2016

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Abstract

Background

Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), although this remains an under-researched area. This paper focuses on themes relating to bereavement which were derived from an analysis of free text survey responses collected in a research priority setting exercise for palliative and EoLC.

Methods

The priority setting exercise involved a public survey, designed to generate research priorities. Rather than identify research topics, many people instead described their experiences and raised more general questions relating to palliative and end of life care. To explore these experiences and perspectives a supplementary thematic analysis was conducted on the survey responses. 1403 respondents took part, including patients, current and bereaved carers, health and social care professionals, volunteers and members of the public.

Results

Several grief issues were identified, which seem specific to the experiences of family caregivers. Responses demonstrated a relationship between death experiences, feelings of guilt and bereavement outcomes for some family caregivers, as well as caregiver experiences of a “void” created by the withdrawal of professional support after death. Communication and support needs were also identified by participants.

Conclusion

This analysis provides further evidence of some of the specific effects that caring for a loved one at the end of life can have on bereavement experiences. Finding ways of improving communication around the time of death and effective follow up approaches post death could help to address some of these issues.
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Metadata
Title
“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers
Authors
Emily Harrop
Fiona Morgan
Anthony Byrne
Annmarie Nelson
Publication date
01-12-2016
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2016
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-016-0165-9

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