Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment

• Published in: JMIR human factors Vol. 11; p. e51789
• Main Authors: Washington, Karla T, Oliver, Debra Parker, Donehower, Allison K, White, Patrick, Benson, Jacquelyn J, Lyons, Patrick G, Demiris, George
• Format: Journal Article
• Language: English
• Published: Canada JMIR Publications 23-05-2024
• Subjects: Adult; Caregivers; Caregivers - psychology; Female; Health care policy; Home Care Services; Hospice care; Hospice Care - methods; Humans; Information systems; Internet access; Male; Medicare; Meetings; Middle Aged; Oncology; Original Paper; Patients; Qualitative Research; Quality of Life; Social networks; Social workers; Symptom Assessment - methods; Symptom management; Visualization; United States > US; hospice care; caregivers; technology; home care services; mobile phone; signs and symptoms
• ISSN: 2292-9495; 2292-9495
• DOI: 10.2196/51789

Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience.
We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application.
We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description.
Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills.
The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.