Background: Despite recommendations and policies to integrate family caregivers into U.S. healthcare settings, caregivers are not systematically involved. Thus, we developed an Integrated Caregiver Patient-Portal system that (1) allows a patient to identify their primary caregiver and their communication preferences; (2) connects the caregiver to a unique portal page to indicate their needs; and 3) informs the care team of dyad responses to aid in integrating the caregiver.
Objective: This formative research explored palliative care clinicians' perceptions of the system to inform refinements before usability testing.
Methods: We conducted two focus groups with palliative care clinicians (N=11) at an NCI-designated cancer center. Transcripts were analyzed using an integrated approach to specify system benefits and concerns.
Results: The most referenced benefits included: Learning information that they might not have known without the system; giving caregivers a voice or a way to express needs; and supporting an ideal model of care. Top concerns included lacking capacity to respond; needing to clarify clinician roles and expertise in responding to caregivers' needs; and ensuring ongoing system adaptability.
Conclusions: The clinicians' feedback resulted in revisions including: (1) modifying the caregiver questions; (2) integrating social workers in the response; and (3) adding a text-based report to the care team.
Implications for practice: This formative research provided valuable feedback for portal development, and also contributes more broadly to recommendations related to integrating caregivers in healthcare.
Foundational: This research provides practical and logistical relevance to the discussion on how to integrate caregivers into clinical care.