The Feasibility and Utility of a Personal Health Record for Persons With Dementia and Their Family Caregivers for Web-Based Care Coordination: Mixed Methods Study

Abstract

Background Managing the complex and long-term care needs of persons living with Alzheimer disease and related dementias (ADRD) can adversely impact the health of informal caregivers and their care recipients. Web-based personal health records (PHRs) are one way to potentially alleviate a caregiver’s burden by simplifying ADRD health care management Objective This study aimed to evaluate Personal Health Record for Persons with Dementia and Their Family Caregivers (PHR-ADRD), a free web-based information exchange tool, using a multiphase mixed methods approach. Methods Dementia caregivers (N=34) were surveyed for their well-being and perceptions of PHR-ADRD feasibility and utility at 6 and 12 months using close- and open-ended questions as well as a semistructured interview (n=8). Exploratory analyses compared participants’ characteristics as well as PHR-ADRD use and experiences based on overall favorability status. Results Feasibility and utility scores decreased over time, but a subset of participants indicated that the system was helpful. Quantitative comparisons could not explain why some participants indicated favorable, neutral, or unfavorable views of the system overall or had not engaged with PHR-ADRD. Qualitative findings suggested that technology literacy and primary care provider buy-in were barriers. Both qualitative and qualitative findings indicated that time constraints to learn and use the system affected most participants. Conclusions Development and dissemination of PHRs for family caregivers of persons with ADRD should aim to make systems user-friendly for persons with limited time and technological literacy. Establishing health care provider buy-in may be essential to the future success of any PHR system.

Pelatihan Pelaksanaan Personal Health Record (Phr) Pada Pasien Dengan Hipertensi Di Puskesmas Kahuripan Tasikmalaya Tahun 2023

“…Kematian akibat penyakit kardiovaskuler di Indonesia termasuk hipertensi, sebanyak 2.577 kasus dengan tahun 2016 di Jawa Barat ditemukan 790.382 kasus. Temuan kualitatif dan kualitatif menunjukkan keterbatasan waktu untuk mempelajari dan menggunakan sistem pengumpulan data (Peterson C, 2020).…”

Shared Access to Patient Portals for Older Adults: Implications for Privacy and Digital Health Equity

“…Such efforts should encompass both patients and their care partners, in recognition of the broader social context in which many older adults comanage or delegate care [ 29 , 32 ], and the arbitrary distinction between patient and care partner roles, which may co-occur simultaneously [ 32 ]. Organizational efforts to engage care partners must also resonate with the needs and concerns of clinicians and staff by enhancing knowledge about the importance of proper identity credentials and addressing concerns regarding potential impacts on workflows, time demands, or both [ 2 , 3 , 33 , 34 ].…”

“…Routine assessment and support of family caregivers are elements of high-quality clinical care and robust systems of long-term services and supports but systems-level approaches are lacking and most interventions have been trialed outside care delivery [ 4 , 38 ]. As an existing mechanism to facilitate bidirectional communication and outreach, shared portal access is a relevant tool in efforts to promote a more optimal person- and family-oriented care delivery system [ 4 , 39 ] and address an identified challenge to disseminate novel technologies to support care partners in real-world practice settings [ 34 , 40 ].…”

A qualitative study of factors influencing ePHR adoption by caregivers and care providers of Alzheimer's patients: An extension of the unified theory of acceptance and use of technology model

“…[35][36][37][38][39][40] ePHRs are increasingly adopted in developed countries. [41][42][43][44][45][46] Despite the growth of ePHRs in developed countries, little experience is available in developing countries. [47][48][49] The reason for this is partly because there are more barriers (such as barriers related to health and technology infrastructures as well as human resources and expertise) to ePHR design/adoption in developing countries than in developed countries.…”

“…ePHRs are increasingly adopted in developed countries 41‐46 . Despite the growth of ePHRs in developed countries, little experience is available in developing countries 47‐49 .…”