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

  • Betty S. Black (a1), Holly Taylor (a2), Peter V. Rabins (a1) and Jason Karlawish (a3)

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.

Copyright

Corresponding author

Correspondence should be addressed to: Betty S. Black, PhD, Johns Hopkins Hospital, 600 North Wolfe Street, Meyer 3-142, Baltimore, Maryland 21287, USA. Phone: +410-955-2003; Fax: +410-614-1094. Email: bblack@jhmi.edu.

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