“Your whole life is turned upside down”: a reflexive thematic analysis identifying recommendations for designing and conducting qualitative research with cancer caregivers

Purpose: There is an increasing need to improve access to person-centered support for cancer caregivers. Qualitative research methods can gather rich insights into the lived experiences of cancer caregivers, providing important information about their unique needs, preferences, and experiences in accessing support for themselves. Methods: This secondary analysis of a qualitative interview study with cancer caregivers aimed to understand how the design and conduct of interviews can be optimized to center caregivers’ voices and lived experiences. Data from 20 semi-structured interviews with cancer caregivers were analyzed using reflexive thematic analysis to explore underlying patterns in how the interviews were conducted and how caregivers shared their needs and experiences. Results: Three themes were developed: (1) cancer caregivers’ health and wellbeing was inherently linked to the survivor’s health and wellbeing, (2) question wording and design can perpetuate the “patient focus” that cancer caregivers experience in other settings, and (3) participating in qualitative research can be a meaningful experience for caregivers and provide an avenue to connect them with community-based support. Conclusions: Researchers should include interview questions which explore dyadic interactions between caregivers and survivors, as well as caregivers’ individual experiences. Practicing reflexivity can increase researchers’ awareness of implicit biases that inform the design and conduct of their research, such as questions that inadvertently shift the focus to the patient rather than the caregiver. Finally, with deeply personal information often disclosed during qualitative interviews, researchers should be equipped to respond with empathy and connect caregivers to professional support as needed.