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

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 ¼ 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.

Feasibility, acceptability and needs in telemedicine for palliative care

“…In the 27 reports, the 3 most common designs were singlearm intervention studies (9; 33%) [17][18][19][20][21][22][23][24][25], reviews (6; 22.2%) [3,[26][27][28][29][30], and qualitative studies (4; 14.8%) [31][32][33][34]. The remainder were cohort, cross-sectional studies or reports / expert opinions [35][36][37][38][39][40][41], with only one randomised controlled study [42].…”

“…Acceptability was described as a specific outcome in 24 (89%) of the 27 studies analysed [3, 17-31, 33-35, 37, 39-42]. The assessment tools were more heterogeneous than those used for feasibility; four were validated questionnaires [19,21,22,42], and the rest were interviews [18,25,[32][33][34]40] and purpose-built questionnaires. The definition of acceptability was more variable, mostly referring to three themes: general satisfaction, positive acceptance as a communication tool and not inferior to physical visits.…”

Codesign approaches involving older adults in the development of electronic healthcare tools: a systematic review

“…In addition to these eight studies, one study acknowledged to the participant they had committed an error but did not provide feedback 43 and another study acknowledged it as a study limitation that they did not review results with participants. 40 Seven studies reached learning level 2—mutual learning, using transference of knowledge that focused on prior experience with the technology. This benefitted both researchers and participants, indicating a bidirectional flow of knowledge occurred.…”

Behavioral Patterns of Supply and Demand Sides of Health Services for the Elderly in Sustainable Digital Transformation: A Mixed Methods Study

“…Regarding the target, the popularization and promotion of digitalization is the goal proposed from the overall governance level. Community staff should actively connect with the elderly, provide digital tools, improve their digital health literacy, and integrate the elderly into the digital society [85]. Community health is the goal of the digital transformation of health care.…”