ArticlePalliative care and social practice2026
"It's a club nobody wanted to join, but we're there": Focus groups on end-of-life care experiences and long-term outcomes of bereaved neuro-oncology caregivers.
Article in Palliative care and social practice, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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8 authors.
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Abstract
Background: The disease burden of malignant brain tumours poses significant challenges to both patients and their family caregivers. Even years post-bereavement, neuro-oncology caregivers can suffer serious and long-lasting adverse outcomes. A previous quantitative survey (reported separately) highlighted significant challenges experienced by bereaved neuro-oncology caregivers. This current work explored these issues further through focus groups. Objective: To identify opportunities to enhance support, we investigated caregiver experiences during the patient's end-of-life phase, the dying process, and post-bereavement outcomes. Design: Focus groups as a component of a sequential mixed-methods study designed together with bereaved caregivers. Methods: We performed online focus groups covering the end-of-life phase, the period surrounding the patient's death, and their post-bereavement outcomes. Sampled from survey respondents, caregivers who were ≥6 months post-bereavement were invited to take part in online focus groups. Following audio transcription, data were analysed using reflexive thematic analysis. Results: In three groups, 7 female (64%) and 4 male (36%) caregivers (55% partners of patients) of deceased patients diagnosed with glioblastoma were interviewed. Themes covered 1) care experiences in the end-of-life 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). Conclusions: 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.
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