Turning points in prognostic uncertainty across the disease trajectory for emerging and young adult caregivers of a parent with advanced cancer

Le résumé fourni par la source

Emerging and young adult caregivers (EYACs, aged 18-35) of a parent with cancer are an understudied, under-resourced, and growing caregiving population. Little is known about their experiences coping with and managing distressing uncertainty about their parent’s prognosis, which is even more distressing when their parent is living with advanced cancer. It is critical to better understand what impacts EYACs’ prognosis uncertainty as their parent’s disease continues to progress to better support their psychosocial needs and promote adaptive coping and adjustment. We conducted interviews with recently bereaved EYACs ( N = 33) of a parent with advanced cancer who died within 12 months after diagnosis using the Retrospective Interview Technique (RIT). Participants identify any events that caused a change in their prognostic uncertainty (i.e., turning points) between their parent’s diagnosis and death by plotting them on a graph. Participants’ graphs were used to guide their interview, which also captured the context and meaning of each turning point (TP). RIT graphs and interview transcripts were thematically analyzed, and a typology of 5 TP types emerged: medical events, observable condition changes, online research, clinical communication, and family communication. EYACs also characterized how the TP timing mattered: TPs that occurred early in the cancer trajectory that influenced EYACs’ beliefs about their parent’s prognosis in turn informed their positive or negative interpretation of future TPs. Findings highlight the significant role communication plays in EYACs’ prognostic uncertainty and provide key insights for future psychosocial interventions to better support this underrepresented, unsupported population of caregivers.

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