Attitudes of Homebound Older Adults and Their Caregivers Toward Research and Participation as Research Advisors

Ashley L Eaton England; Christine S Ritchie; Alexandria Mickler; Carla M Perissinotto; Sarah K Garrigues; Bruce Leff; Orla C Sheehan; Krista L Harrison

doi:10.1093/geront/gnaa189

Attitudes of Homebound Older Adults and Their Caregivers Toward Research and Participation as Research Advisors

Gerontologist. 2021 Nov 15;61(8):1202-1210. doi: 10.1093/geront/gnaa189.

Authors

Ashley L Eaton England^{1

2}, Christine S Ritchie³, Alexandria Mickler^{4

5}, Carla M Perissinotto¹, Sarah K Garrigues¹, Bruce Leff⁴, Orla C Sheehan⁴, Krista L Harrison^{1

6}

Affiliations

¹ Division of Geriatrics, University of California, San Francisco, California, US.
² Department of Psychology, Central Michigan University, Mount Pleasant, Michigan, US.
³ The Mongan Institute and the Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Boston, Massachusetts, US.
⁴ Division of Geriatric Medicine, Center for Transformative Geriatric Research, Johns Hopkins University School of Medicine, Baltimore, Maryland, US.
⁵ Department of Population, Family and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, US.
⁶ Philip R. Lee Institute for Health Policy Studies, University of California, San Francisco, California, US.

Abstract

Background and objectives: Homebound older adults and their caregivers have not historically been engaged as advisors in patient-centered outcomes research. This study aimed to understand the attitudes of homebound older adults and their caregivers toward research and participation as research advisors.

Research design and methods: Descriptive thematic analysis of semistructured interviews conducted with 30 homebound older adults and caregivers recruited from home-based medical care practices. Interview questions addressed opinions on research and preferences for engaging as research advisors.

Results: Of 30 participants, 22 were female, 17 were people of color, and 11 had Medicaid. Two themes emerged related to perceptions of research overall: (a) utility of research and (b) relevance of research. Overall, participants reported positive attitudes toward research and felt that research could affect people like them. Three themes emerged related to participating as research advisors: (a) motivators, (b) barriers, and (c) preferences. Participants were open to engaging in a variety of activities as research advisors. Most participants were motivated by helping others. Common barriers included time constraints and caregiving responsibilities, and physical barriers for homebound individuals. Participants also reported fears such as lacking the skills or expertise to contribute as advisors. Many were willing to participate if these barriers were accommodated and shared their communication preferences.

Discussion and implications: Diverse homebound older adults and caregivers are willing to be engaged as research advisors and provided information to inform future engagement strategies. Findings can inform efforts to meet new age-inclusive requirements of the National Institutes of Health.

Keywords: Home-based medical care; Patient and caregiver perspective; Patient-centered research; Qualitative study.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Aged
Attitude
Caregivers*
Communication
Female
Homebound Persons*
Humans
Qualitative Research
Social Behavior

Abstract

Publication types

MeSH terms

Grants and funding