Abstract
BACKGROUND: The last three months of life (end-of-life phase) are profoundly challenging for patients with brain tumours and their family caregivers. Post-bereavement outcomes are largely unknown.
AIM: To better understand long-term outcomes of a brain tumour diagnosis on families, we aimed to describe caregiver experiences during the end-of-life phase and beyond.
DESIGN: In this sequential mixed-methods study designed together with bereaved caregivers, we used an online survey. This comprised end-of-life experiences, and post-bereavement outcomes (family functioning: Family APGAR; resilience: CD-RISC-10; mood: HADS; prolonged grief: PG-13-R; post-traumatic stress: TSQ).
SETTING/PARTICIPANTS: Caregivers of patients with brain tumours who were bereaved ⩾6 months ago were invited through social media and charities.
RESULTS: 105 bereaved neuro-oncology caregivers participated. The end-of-life phase was marked by high symptom burden and disruption to family life, compounded by often unsatisfactory information provision and support. Forty-three percent did not describe the patient's death as dignified. Most caregivers were not well-supported post-bereavement, and current functioning was impacted by notable rates of prolonged grief disorder (64%), post-traumatic stress disorder (42%), depression (35%), anxiety (61%), disruption to family life (53%) and low levels of resilience. Multivariable regressions found better resilience and family functioning to be protective factors for both post-traumatic stress disorder and prolonged grief disorder symptoms, with a dignified death additionally linked to caregivers' prolonged grief scores, explaining 23.8% and 51.0% of variance, respectively.
CONCLUSIONS: Bereaved neuro-oncology caregivers have high rates of adverse mental health outcomes, highlighting a pressing need for improvements in palliative, end-of-life and post-bereavement services.
Original language | English |
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Article number | 02692163251344164 |
Journal | Palliative Medicine |
Pages (from-to) | 2692163251344164 |
ISSN | 0269-2163 |
DOIs | |
Publication status | E-pub ahead of print - 14 Jun 2025 |