Abstract
BACKGROUND: It is widely recognised, that family members are central to care of people with advanced illness, and that support should be provided to all family members in need thereof. The aim of this study was to investigate family members' experiences of support received during the last three months of life, at the time of death and after the death of a person with advanced illness. METHODS: A retrospective cross-sectional survey design was employed, using the VOICES(SF) questionnaire and multiple methods for data analyses. The sample consisted of 485 bereaved family members (aged: 20-90 years old, 70% women) of people who died in hospital between August 2016-April 2017. RESULTS: Of the family members, 58,8% reported they had received enough help and support during the illness, whereas 30,2% had not. Family members' comments about support during the illness were mainly related to care the ill person had or had not received, rather than about support they themselves received. Of all family members, 52,8% reported having had enough support at the time of the ill person's death. Related to support at death, 14,6% reported that the imminence of death was not clear, which was described as having affected their opportunity to be with the dying person at the time of death. Of all, 25,2% had a follow-up conversation after the death, 48% did not and did not want to, and 21% had no follow-up conversation, but would have liked one. A follow-up conversation was described as helpful for the bereavement process, and disappointment was expressed when not receiving support after the death. CONCLUSIONS: Family members' experiences of support were partly related to whether the ill person's care needs were fulfilled. Healthcare staff expressing empathy and respect in the care of dying people and their family members were important for family members' experiences of support. Family members' difficulty recognising that death was imminent and the importance of healthcare staff providing them with clear information were expressed in connection with support at death. Follow-up conversations were valued by family members, especially if with a healthcare professional who was present at the time of death.