Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care.

Portz JD, Ford KL, Doyon K, Bekelman DB, Boxer RS, Kutner JS, Czaja S, Bull S. Using Grounded Theory to Inform the Human-Centered Design of Digital Health in Geriatric Palliative Care. Journal of pain and symptom management. 2020 Dec 1; 60(6):1181-1192.e1.

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Abstract:

CONTEXT: Digital health offers innovative mechanisms to engage in palliative care, yet digital systems are typically designed for individual users, rather than integrating the patient''s caregiving "social convoy" (i.e., family members, friends, neighbors, formal caregiving supports) to maximize benefit. As older adults with serious illness increasingly rely on the support of others, there is a need to foster effective integration of the social convoy in digitally supported palliative care. OBJECTIVES: Conduct a qualitative study examining patient, social convoy, and health care provider perspectives on digital health for palliative care to inform the design of future digital solutions for older adults with serious illness and their social convoy. METHODS: Grounded theory approach using semi-structured interviews (N  =  81) with interprofessional health care providers, older adults with serious illness, and their social convoy participants at home, clinic, or Zoom. Interviews were conducted using question guides relevant to the participant group and audio-recorded for verbatim transcription. Two coders lead the inductive analysis using open and axial coding. RESULTS: Thematic results aligned with the human-centered design framework, which is a participatory approach to the design process that incorporates multiple user stakeholders to develop health solutions. The human-centered design process and corresponding theme included the following: 1) Empathy: Patient, Caregiver, and Provider Experience reports participants'' experience with managing serious illness, caregiving, social support, and technology use. 2) Define: Reactions to Evidence-Based Care Concepts and Barriers illustrates participants'' perspectives on the domains of palliative care ranging from symptom management to psychosocial-spiritual care. 3) Ideation: Desired Features reports participant recommendations for designing digital health tools for palliative care domains. CONCLUSION: Digital health provides an opportunity to expand the reach of geriatric palliative care interventions. This paper documents human-centered preferences of geriatric palliative care digital health to ensure technologies are relevant and meaningful to health care providers, patients, and the caregiving social convoy.