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.

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.…”

Design Frameworks for Mobile Health Technology

“…A variety of users or stakeholders participated in these studies, including patients, caregivers, healthcare professionals, seniors, university students, veterans, and other mHealth technology users (see Table 2). Overall, the sample sizes were small: five of the studies had twenty or less participants (Buman et al, 2016;Farao et al, 2020;Goldstein et al, 2017 ;van Agteren et al, 2018;Zucchelli et al, 2021), three had more than 50 participants (Bricker et al, 2020;Portz et al, 2020;Halttu & Oinas-Kukkonen, 2017, one of which had more than 100 participants (n=147) (Halttu & Oinas-Kukkonen, 2017).…”

“…Physical health related issues, such as diet and lifestyle behaviors have received a wealth of attention in recent research. For example, a few studies share a common goal to improve users' physical health (Buman et al, 2016;Farao et al, 2020;Goldstein et al, 2017;Halttu & Oinas-Kukkonen, 2017;Morse et al, 2021), to help quit smoking (Bricker et al 2020;van Agteren, Lawn, Bonevski, & Smith, 2018), or to improve emotional health (Dhillon, Wunsche, & Lutteroth, 2016;Portz et al, 2020;Zucchelli et al, 2021). Other studies may focus on a particular user group, for example, senior patients (Dhillon et al, 2016) and their caregivers (Alkhushayni & McRoy, 2016).…”

“…Researchers also utilized human-centered iterative design to improve Symptom Control and Information Exchange via mHealth technology (Morse et al, 2021) and to enhance geriatric palliative care systems (Portz et al, 2020). Another study adapted the axiomatic design framework to assess the gap between the design parameters of a new system and the needs of its target users (Vossebeld, Puik, Jaspers, & Schuurmans, 2019).…”