Researchers' perspectives on the role of study partners in dementia research

Betty S. Black, Holly Taylor, Peter V. Rabins, Jason Karlawish

Research output: Contribution to journalReview article

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 languageEnglish (US)
Pages (from-to)1649-1657
Number of pages9
JournalInternational psychogeriatrics
Volume26
Issue number10
DOIs
StatePublished - Jun 20 2014

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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

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