“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

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.

Unmet needs of patients with cancer in their last year of life as described by caregivers in a developing world setting: a qualitative study

“…This study confirmed the findings of many others internationally, that care-givers need support [19,37,62,75,76], often ignore their own needs [20] and bear the burden of advocacy [13,14] and guilt [38,77]. The family unit needs information [26,31,35,36,78,79] and financial help [62,80,81].…”

“…Inadequate communication was cited by about half the participants as a major unmet need. In studies of endof-life care, this is consistently ranked as a critical need [13,14,24,38]. Poor communication was distressing to caregivers in this study.…”

“…Poor communication was distressing to caregivers in this study. As seen in other work, this lack of consistent communication can contribute to an increased burden of care [36] and to adverse bereavement experiences [38].…”

“…Many desired to care for their loved ones at home [17][18][19], but the caregiver experience is frequently reported as very challenging [20][21][22][23][24]. Effective communication and appropriate information are domains consistently identified as essential [14,15,21,22,[25][26][27][28][29][30][31][32][33][34][35][36][37][38][39].…”

Characteristics of caregivers submitted to music therapy after the death of loved ones

“…It is highlighted that the lack of empathy and social support, and the exclusion from religious or social rites, tend to intensify emotional reaction and to contribute to the development of complicated bereavement (20) , given that the family members' capacity in dealing with the death of their loved ones depends on their own psychological and physical conditions, but also on their support network (21) . Thus, given the lack of support, the bereaved family experiences an "emptiness", evincing the need for continuing the care after the death of their loved ones (22) , set as a risk factor for the process of elaborating the bereavement. Despite 75.4% of participants having reported not receiving social/ community support, it is believed that the spiritual/religious support, reported by 60.9% of participants, may have met this deficit.…”