Abstract
Background: Study partners for dementia research participants are vital to the research process, but little is known about their role, responsibilities, and experiences. Study partners are usually family members or friends - often the patient's informal caregiver - who are knowledgeable about and usually accompany the participant to study visits. This study examines researchers' perspectives on the role of study partners in dementia research. Methods: Qualitative data collection and analytic methods were used. Semi-structured individual interviews with principal investigators, study coordinators, and research nurses (i.e. researchers; n = 17) at two academic research sites were recorded, transcribed, and content analyzed to identify themes in the data. Results: According to researchers, study partners either make or help make research enrollment and post-enrollment decisions, serve as knowledgeable informants for the participants, manage the logistics that enable participants to comply with a study's protocol, and provide comfort and encouragement for the patient to engage in and complete a study. Researchers describe ideal qualities of study partners as being able to provide reliable information, being dependable and adherent to the protocol, and not expecting a benefit. They also report that study partners may face both practical and emotional challenges during research participation. However, researchers believe that study partners derive dementia-related education, caregiver support, and satisfaction from their involvement in research. Conclusions: Investigators, potential study partners, and institutional review boards should be aware of study partners' research responsibilities, challenges, and their interests as caregivers.
Original language | English (US) |
---|---|
Pages (from-to) | 1649-1657 |
Number of pages | 9 |
Journal | International psychogeriatrics |
Volume | 26 |
Issue number | 10 |
DOIs | |
State | Published - Jun 20 2014 |
Keywords
- clinical trials
- dementia research
- knowledgeable informants
- qualitative research
- research ethics
- study partners
ASJC Scopus subject areas
- Clinical Psychology
- Gerontology
- Geriatrics and Gerontology
- Psychiatry and Mental health