Palliative care and social practice · 2026
"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.
СтатьяНазвание и аннотация: Перевод в очереди
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Meer Shaista, Miller Rosanna, Buckle Peter, Murray Louise, Lewis-Smith Catherine, Ziegler Lucy, Piil Karin, Boele Florien
Аннотация
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.
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.