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

Published online by Cambridge University Press:  03 July 2014

Betty S. Black ,
Holly Taylor ,
Peter V. Rabins  and
Jason Karlawish
Betty S. Black*
Affiliation:
Johns Hopkins University School of Medicine and Johns Hopkins Berman Institute of Bioethics, Johns Hopkins Hospital, 600 North Wolfe Street, Meyer 3-142, Baltimore, Maryland 21287, USA
Holly Taylor
Affiliation:
Johns Hopkins University Bloomberg School of Public Health and Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore, Maryland 21205, USA
Peter V. Rabins
Affiliation:
Johns Hopkins University School of Medicine and Johns Hopkins Berman Institute of Bioethics, Johns Hopkins Hospital, 600 North Wolfe Street, Meyer 3-142, Baltimore, Maryland 21287, USA
Jason Karlawish
Affiliation:
Perelman School of Medicine, University of Pennsylvania, 3615 Chestnut Street, Philadelphia, Pennsylvania 19104, USA
*
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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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.

Keywords

dementia researchstudy partnersknowledgeable informantsresearch ethicsclinical trialsqualitative research
Type
Research Article
Information
International Psychogeriatrics , Volume 26 , Issue 10 , October 2014 , pp. 1649 - 1657
Copyright
Copyright © International Psychogeriatric Association 2014 

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