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

Colleen M. Peterson, Jude P. Mikal, Hayley R. McCarron, Jessica M. Finlay, Lauren L. Mitchell, Joseph E. Gaugler

Research output: Contribution to journalArticlepeer-review

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.

Original languageEnglish (US)
Article number17769
JournalJMIR Aging
Volume3
Issue number1
DOIs
StatePublished - Jan 2020

Bibliographical note

Publisher Copyright:
© 2020 JMIR Publications. All rights reserved.

Keywords

  • Alzheimer disease
  • Assistive technology
  • Caregiver burnout
  • Disease management
  • Family caregiving
  • Informal caregiving
  • Personal health record
  • Technology
  • Web-based intervention

PubMed: MeSH publication types

  • Journal Article

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