Abstract BACKGROUND Even years post-bereavement, neuro-oncology caregivers are known to suffer serious and long-lasting adverse outcomes. To identify opportunities to enhance support, we investigated caregiver experiences during the patient’s end-of-life (EoL) phase and the dying process, related to their post-bereavement outcomes. MATERIAL AND METHODS In a sequential mixed-methods study, caregivers who were ≥6 months post-bereavement completed a quantitative survey (reported separately). A nested sample of caregivers were invited to take part in online focus groups covering the EoL phase, the period surrounding the patient’s death, and their post-bereavement outcomes. Following audio transcription, data were analysed using reflexive thematic analysis. The study was co-designed by bereaved caregivers, who also co-facilitated the groups and contributed to data analysis. RESULTS Three groups with, in total, 11 caregivers (64% women, 55% partners of patients) of deceased patients diagnosed with glioblastoma were held. Themes covered 1) care experiences in the EoL phase (covering communication, information, support needs, and balancing family dynamics), 2) caregiver experiences surrounding patient death, and 3) immediate and longer-term post-bereavement outcomes (covering complex and conflicting emotional responses, expectations and strategies to cope with grief, and the value of formal and informal support). CONCLUSION Findings highlight ongoing significant and unmet emotional support needs of bereaved neuro-oncology caregivers. Caregivers want and deserve to be proactively offered adequate and timely support which could limit the long-lasting adverse impact of providing care.
Meer et al. (Wed,) studied this question.