"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.
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.


CONCLUSIONS
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.
Division of Population Medicine, Marie Curie Palliative Care Research Centre, Cardiff University School of Medicine, 1st Floor Neuadd Meirionydd, Heath Park Way, Cardiff, CF14 4YS, UK. harrope@cardiff.ac.uk.
Emily
http://orcid.org/0000-0003-2820-0023
E
Harrop
SURE/ School of Healthcare Sciences, Cardiff University, 1st Floor Neuadd Meirionydd, Heath Park Way, Cardiff, CF14 4YS, UK.
Fiona
F
Morgan
Division of Population Medicine, Marie Curie Palliative Care Research Centre, Cardiff University School of Medicine, 1st Floor Neuadd Meirionydd, Heath Park Way, Cardiff, CF14 4YS, UK.
Anthony
A
Byrne
Division of Population Medicine, Marie Curie Palliative Care Research Centre, Cardiff University School of Medicine, 1st Floor Neuadd Meirionydd, Heath Park Way, Cardiff, CF14 4YS, UK.
Annmarie
A
Nelson
D000223:Adaptation, Psychological; D001601:Bereavement; D017028:Caregivers / Q000523:psychology*; D003142:Communication; D005190:Family / Q000523:psychology*; D005260:Female; D019538:Health Care Surveys; D017051:Hospice Care; D006801:Humans; D008297:Male; D036301:Qualitative Research; D012944:Social Support; D013727:Terminal Care / Q000523:psychology* / Q000592:standards; D019452:Terminally Ill
Bereavement; Caregivers; End of life care; Grief; Palliative care; Qualitative