JMIR Publications

ABSTRACT

Background:

Each year, family caregivers help the 2 million newly-diagnosed patients with cancer manage symptoms; however few interventions have been developed and proven efficacious to enhance their symptom support role. The recent expansion of electronic patient-reported outcomes (ePROs), including remote symptom monitoring, represents a potential opportunity to explore novel complementary caregiver symptom management support that leverages patient ePROs.

Objective:

The objective of this study was to elicit feedback on a theory-based intervention concept, called FamilyAWARE, consisting of one-on-one coaching on providing effective symptom support to patients and access to a web-based dashboard reporting summaries of their care recipient’s most recent ePRO symptom reports and tailored recommendations.

Methods:

This was a qualitative formative evaluation study (NIH Stage IA) where family caregivers (n=20), patients with stage I-IV cancer (n=20), and oncology clinicians (n=25) were recruited from a comprehensive cancer center in the U.S. South and participated in semi-structured, one-on-one interviews (January 2025-July 2025). Participants were shown an outline of the FamilyAWARE intervention concept and asked open-ended questions about the proposed content, format, and delivery of the intervention. Professionally transcribed interviews were analyzed using a thematic analysis approach.

Results:

Analysis yielded four primary themes: 1) First impressions and relevance: Participants’ initial impressions of FamilyAWARE were generally positive, with caregivers viewing it as highly relevant and potentially beneficial. Patients and clinicians expressed more cautious optimism, shaped by considerations of relevance and minimizing burden. 2) Key factors for acceptability and engagement: Caregivers showed strong interest in the intervention’s potential to increase confidence in symptom support; however, engagement was seen as contingent on the perceived value, minimal burden, and flexible delivery of the intervention, particularly given time and technology constraints. 3) Coaching content and delivery: The proposed format was widely viewed as feasible. Participants emphasized content that helps caregivers balance assisting patients with promoting independence, while also supporting them in deciding when to call for help and proactive symptom strategies. Opinions on delivery by phone, in-person, or videoconference varied. 4) Dashboard design and information access: Participants emphasized the importance of a simple, mobile-friendly dashboard designed for low digital literacy, with plain language and visual cues. Caregiver access to patient symptom data was broadly supported if patient permission was obtained.

Conclusions:

Findings highlight strong interest and insights into designing a caregiver-focused intervention that integrates one-on-one coaching with ePRO patient symptom reports and tailored recommendations. Participant insights from this study will directly inform refinement of the intervention’s content, format, and delivery, with the goal of advancing it to pilot testing. Clinical Trial: N/A