Abstract BACKGROUND The last three months of life (end-of-life EoL phase) is profoundly challenging for patients with brain tumours (PBTs) and their family caregivers. Post-bereavement outcomes are largely unknown. To better understand long-term outcomes of a brain tumour diagnosis on families, we aimed to describe caregiver experiences during the EoL phase and beyond. MATERIAL AND METHODS In this sequential mixed-methods study designed together with bereaved caregivers, we used an online survey. Caregivers of PBTs who were bereaved ≥6 months ago were invited through social media and charities. The survey comprised EoL experiences, and post-bereavement outcomes (family functioning: Family APGAR; resilience: CD-RISC-10; mood: HADS; prolonged grief: PG-13-R; post-traumatic stress: TSQ). Regression analyses were performed to investigate potential factors associated with poor caregiver outcomes. RESULTS 105 bereaved neuro-oncology caregivers participated. The EoL 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 (PGD, 64%), post-traumatic stress disorder (PTSD, 42%), depression (35%), anxiety (61%), disruption to family life (53%), and low levels of resilience. The multivariable model which included resilience and family functioning explained 23.8% of variance in PTSD (χ2(2)=19.192 p0.001). Better resilience (CD-RISC-10 total score; B=-0.078, p=0.005, 95% CI=0.876 to 0.977) and family functioning (APGAR total score; B=-0.163, p=0.079, 95% CI=0.728 to 0.991) was associated with a reduction in the likelihood of caregivers displaying PTSD. The multivariable model which included resilience, family functioning, and dying with dignity explained 51.0% of variance in PGD (χ2(2)=37.298 p0.001). Better resilience (B=-0.193, p0.001, 95% CI=0.748-0.908), better family functioning (B=-0.181, p=0.089, 95% CI=0.678-1.028), and the patient dying with dignity (B=-2.031, p=0.025, 95% CI=0.022-0.771) were associated with a reduction in the likelihood of caregivers exhibiting PGD. CONCLUSION Bereaved neuro-oncology caregivers have high rates of adverse mental health outcomes. Better resilience and family functioning were protective factors for both PTSD and PGD symptoms, with a dignified death additionally linked to caregivers’ PGD scores. This work highlights a pressing need for improvements in palliative, EoL, and post-bereavement services.
Meer et al. (Wed,) studied this question.