Engaging patient-family dyads to inform the development of a digital health intervention to support cancer caregivers.

Abstract

221 Background: Shifts in cancer care from hospital to home have increased the burden on family caregivers of individuals with cancer. Cancer caregiving is demanding and associated with declines in caregivers’ physical and psychological well-being. Digital health interventions may improve caregiver well-being by supporting them to monitor patient symptoms, access social support, and communicate with patients’ care team members. Despite benefits to quality care, few digital health interventions have been developed or implemented to support cancer caregivers. The purpose of this study was to develop a web-based intervention (myCare2) focused on supporting caregivers and caregiver well-being. Methods: This multi-method study followed a user-centered design. Participants were recruited from two clinics within one NCI-designated cancer center. We conducted three focus groups with patients with hematologic or gastrointestinal cancers and their caregivers to identify needs and preferences and guide intervention development. Next, we developed a wireframe prototype of myCare2. We iteratively refined the prototype in response to feedback obtained in cognitive interviews with patient-caregiver dyads. Lastly, we built a functioning web-based prototype and conducted user tests with dyads. Focus groups, cognitive interviews, and user tests were audio recorded, transcribed, and analyzed using conventional content analysis. Results: Eight dyads participated in three focus groups. Caregivers reported feeling unprepared and viewed themselves as “head of logistics” for the patient. Caregivers expressed the desire for a tool to help them organize caregiver responsibilities, including medication management, daily schedules and appointments, symptom monitoring, nursing and medical tasks, self-care, and communication with clinicians and support networks. In cognitive interviews, four dyads reviewed and provided positive feedback on the wireframe prototype features that allow the caregiver to schedule tasks; report patient and caregiver concerns; track patient symptoms and medications; ask family and friends for support; share updates with support networks; and find local resources, classes, and events. Five dyads tested myCare2, providing positive and constructive feedback about the intervention layout and functionality. Conclusions: Growing evidence suggests digital health interventions can benefit caregivers managing cancer care at home. The myCare2 intervention is a web-based tool based on caregiver and patient feedback that was found helpful and acceptable. Future research should evaluate the feasibility of myCare2, measure its effects on caregiver and patient outcomes, and identify optimal implementation strategies for use in practice.