Methods: Grounded theory approach using semi-structured interviews (N=81) with patients 65+ years of age with serious illness (n=30), their family caregivers (n= 31; 0-4 caregivers per patient) and interprofessional palliative care providers (n=20). The approximately 60-minute interviews were conducted at a location convenient to the participant including their home, clinic, or Zoom. Interviews were recorded and transcribed for open and axial coding. Using a team-based approach, the thematic analysis aligned with the human centered design framework.
Results: Three main human-centered design themes emerged: (1) Empathy: Patient, Caregiver, and Provider Experience reporting participants’ experience with managing serious illness, caregiving, social support, and technology use. (2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. (3) Ideation: Desired Features reports participant recommendations for receiving and delivery palliative care domains via digital health.
Conclusions and Implications: Digital health strategies are needed more than ever during COVID-19 pandemic to provide palliative care interventions, monitor patients, support convoys, and promote caregiving. Findings uncover the need for adaptable, personalized platforms for multiple users, allowing for shared communication, tailored assessments, advanced functionalities, and alignment with current technology use. Patients, family caregivers, and health care providers alike were excited about the opportunity to communicate about palliative care needs in a new, digitally supported way. Digital palliative care interventions currently target symptom monitoring and assessment, and while participants recognized the importance of these domains, they were less enthusiastic about these specific tools. Rather, participants were eager to use tools regarding decision support, convoy support, goal setting, and educational resources. Integrating these tools in combination with symptom monitoring and assessment features to tailor educational resources may provide a more comprehensive digital palliative care experience for patients and their caregivers.