Roles undertaken by family caregivers to help individuals with cancer manage symptoms: a qualitative study of caregivers, patients, and oncology clinicians

Abstract

Purpose: Identify and describe the distinct roles family caregivers undertake to help patients with cancer manage symptoms from diverse constituency perspectives. Methods: Qualitative study employing one-on-one, semi-structured interviews with family caregivers (n = 20), their care recipients with stage I–IV cancers (n = 20), and oncology clinicians involved with remote symptom monitoring program (n = 25). Participants were recruited from a large academic comprehensive cancer center between January 2025 and July 2025. Interviews were professionally transcribed and analyzed using a thematic analysis approach. Results: Caregivers averaged 59 years, were 60% White and 40% Black race, and were mostly female (70%) and the patient’s spouse/partner (40%). Patients averaged 58 years and were mostly female (75%) with a wide range of cancer types. Clinicians averaged 37 years and included nurses (32%), physicians (24%), and non-clinical navigators (20%). Themes included (1) assisting with hands-on and direct symptom management; (2) providing emotional support and motivation; (3) promoting preventative self-care and restorative behaviors; and (4) serving as symptom reporter, advocate, and information seeker. Clinicians primarily stressed the role caregivers played as a symptom reporter and advocate. (5) A fifth theme we noted was the challenge caregivers have in finding the right balance of helping while respecting patients’ autonomy and independence. Conclusion: These findings elucidate the symptom partnering roles that cancer family caregivers play in how patients manage their symptoms and the key struggles in navigating this role. Optimizing these roles represents novel targets for interventions to support the symptom partnering role of family caregivers.