Hope in the era of precision oncology: a qualitative study of informal caregivers' experiences

Abstract

Objectives: To explore informal caregivers' perspectives on precision medicine in cancer care.

Design: Semi-structured interviews with the informal caregivers of people living with cancer and receiving targeted/immunotherapies. Interview transcripts were analysed thematically using a framework approach.

Setting: Recruitment was facilitated by two hospitals and five Australian cancer community groups.

Participants: Informal caregivers (n=28; 16 men, 12 women; aged 18-80) of people living with cancer and receiving targeted/immunotherapies.

Results: Thematic analysis identified three findings, centred largely on the pervasive theme of hope in relation to precision therapies including: (1) precision as a key component of caregivers' hope; (2) hope as a collective practice between patients, caregivers, clinicians and others, which entailed work and obligation for caregivers; and (3) hope as linked to expectations of further scientific progress, even if there may be no personal, immediate benefit.

Conclusions: Innovation and change in precision oncology are rapidly reconfiguring the parameters of hope for patients and caregivers, creating new and difficult relational moments and experiences in everyday life and in clinical encounters. In the context of a shifting therapeutic landscape, caregivers' experiences illustrate the need to understand hope as collectively produced, as emotional and moral labour, and as entangled in broader cultural expectations of medical advances. Such understandings may help clinicians as they guide patients and caregivers through the complexities of diagnosis, treatment, emerging evidence and possible futures in the precision era. Developing a better understanding of informal caregivers' experiences of caring for patients receiving precision therapies is important for improving support to patients and their caregivers.

Keywords: adult oncology; oncology; qualitative research.