Cancer caregiver information needs: communication experiences with health providers – a qualitative study

Purpose We sought to explore the lived experience of caregivers when communicating with doctors and nurses about their cancer-related information needs. Methods Semistructured interviews (n=20) were conducted with cancer caregivers. Data were collected as part of a broader study on caregiver health literacy needs. Interviews were analysed thematically. Results Seven themes emerged from the analysis. These themes were: (a) the importance of using everyday language and a variety of information delivery formats, (b) the need for sufficient time to discuss information, (c) the importance of creating a safe space for caregivers to participate during consultations, (d) health providers having a proactive approach to communication and being accessible, (e) access to health providers who recognised and included the caregiver during consultations, (f) health providers developing relationships with the caregiver and person with cancer and (g) caregiver recommendations for service improvement. Conclusions This study highlights how the quality of providers’ communication with caregivers impacts their information needs. Caregivers perceive their information needs are met when providers engage in person-centred strategies. Difficulty acquiring and understanding cancer-related information occurs when providers block caregiver questioning about cancer. Caregiver understanding of cancer information is critical to support the caregiver’s role in cancer care.