Aftermath of death of a seriously ill family member: Online survey of psychological distress and care satisfaction of relatives

Abstract

The aim of the study was to assess the level of psychosocial distress and satisfaction with care in family caregivers after the death of a close relative. Anxiety and depression (HADS) of family caregivers were evaluated in both bereaved family caregivers and a comparable group from the general population. Furthermore, satisfaction with care (ZUF-8) and social support (HOPE-Module, ESSI) were assessed after the patients had died. Regression models were employed to analyze associations between psychological distress and sociodemographic and care-related variables. We conducted an online survey with 200 bereaved family caregivers (93% female, time since death of the relative: M=306 days). Of these, 31% were the primary caregiver. The bereaved caregivers were highly psychologically distressed (high anxiety: 41%/high depression: 35%). From the survivors' point of view, care at the end of life was partially insufficient: about one in three of the dying patients had suffered from pain and 20% had not been treated with dignity. After the relative had passed away, 44% of the bereaved caregivers did not get information about support offers; one in three missed emotional assistance. Dissatisfaction with care and support was associated with increased psychological distress, higher age and a shorter period of care. The high level of psychological distress in bereaved family caregivers suggests high supportive care needs, which are often not met in practice. Family caregivers need to be prepared for the time after their relative's death and should be offered psychosocial support.