"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.

Emily Harrop,Fiona Morgan,Anthony Byrne,Annmarie Nelson

doi:10.1186/s12904-016-0165-9

Emily Harrop, Fiona Morgan + Show 2 more

Open Access

https://doi.org/10.1186/s12904-016-0165-9

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Abstract

BackgroundResearch 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.MethodsThe 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.ResultsSeveral 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.ConclusionThis 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.

Highlights

Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), this remains an under-researched area
This paper reports on a supplementary qualitative analysis of ‘free text’ survey data relating to bereavement, which was collected from a recent research priority setting exercise for palliative and end of life care (EoLC) research [26]
The results reported in this paper provide further insight into how carer specific experiences of EoLC and the death of their loved ones impact upon their bereavement experiences

Summary

Introduction

Research suggests that there may be bereavement experiences and support needs which are specific to family caregivers providing end of life care (EoLC), this remains an under-researched area. Former caregivers have reported feelings of failure, guilt and regret in relation to unfulfilled place of care preferences and decision-making responsibilities and outcomes [15, 19, 20, 22, 23]. These accompany haunting images of physical and emotional suffering associated with the illness [8, 12, 24, 25], the physical and cognitive decline of the patient [8, 15, 25] and the trauma of the death itself [17, 25]. Other factors that have been found to impact upon bereavement and complicate the grieving process for family caregivers include missing the death, lack of preparedness for death [12, 20, 25], inadequate terminal support [20, 24, 25] and insufficient knowledge of patient history amongst treating healthcare professionals [20]

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