From hope to loss and back again: Loved ones’ experience with glioblastoma in the spatial heterogeneity challenge

BACKGROUND: Glioblastoma (GBM) is an aggressive primary brain tumour that carries a great deal of symptom burden, placing significant stress on caregivers. The purpose of this current study is to capture realities of bereaved loved ones of patients with GBM throughout the illness journey and to understand family beliefs and experiences regarding a post-mortem whole brain analysis study, the Spatial Heterogeneity Challenge (SHC). METHODS: This qualitative description study utilized semi-structured interviews with 16 bereaved loved ones of previous SHC donors. Data was analyzed using thematic analysis. RESULTS: Experiences were temporally categorized into phases of the illness journey (diagnosis, standard therapy, 'honeymoon period', clinical trials, end of life, and donation). Within these categories, participants reported inadequate support in caring for their loved one and accessing clinical trials. Regarding the SHC, participants felt proud of the patient's participation, and reported alleviated stress and meaning provided to an otherwise devastating loss. CONCLUSIONS: The illness journey of patients with GBM and their families is unique from other cancers and requires additional support from our healthcare system with a streamlined approach to care. Providing the opportunity to participate in studies like the SHC after death allows families to gain meaning from this devastating experience.