Abstract

A diagnosis of glioblastoma multiforme, a World Health Organisation grade IV brain tumour, is devastating for patients and their families who bear the impetus of caregiving. GBM caregivers act as de facto health professionals when their loved ones are discharged prematurely from hospitals. Faced with complex healthcare needs, GBM caregivers report the highest psychological burden, and highest unmet needs of all cancer caregivers. Despite this, they rarely accessed rehabilitation services. Researchers hardly engaged with their stories. The current research on GBM caregiving is predominantly from a biomedical perspective, not only offering limited understandings of psychosocial experiences, but also, evidencing the need for caregiver stories in caregiving research. The researcher recruited 7 bereaved caregivers, who had previously narrated stories online about caring for their loved ones diagnosed with GBM and; consented to the use of their stories as research data. These stories covered a period of between 1-3+ years, throughout the illness trajectory and post-bereavement. The researcher further conducted email interviews focussed on the retrospective perspectives of sharing stories online. Participants provided feedback on the preliminary findings of the DNA. The findings consisted of multiple layers of interpretations drawn from social constructionism, narrative and feminist relational theories, beginning with subjective stories, collective story typologies and core narratives, thereby illuminating the relationships between GBM caregivers, the stories they narrated and the event of narrating stories online. An additional layer of interpretation served to shed light on the relational, dialogical, performative and hindsight perspectives of storytelling and the storytelling landscape. This research decentres the dominance of biomedicine in caregiving research to present a perspective from GBM caregivers using their own stories, in their own voices, so as to inform counselling psychology research and practice.