Hostname: page-component-cd9895bd7-gxg78 Total loading time: 0 Render date: 2024-12-26T08:22:31.708Z Has data issue: false hasContentIssue false
  • English
  • Français

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: [email protected].
Get access

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 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Bellack, A. S. et al. (2007). Assessment of community functioning in people with schizophrenia and other severe mental illnesses: a white paper based on an NIMH-sponsored workshop. Schizophrenia Bulletin, 33, 805–822.Google Scholar
Black, B. S., Johnston, D., Rabins, P. V., Morrison, A., Lyketsos, C. and Samus, Q. M. (2013a). Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the MIND at home study. Journal of the American Geriatric Society, 61, 2087–2095.Google Scholar
Black, B. S., Wechler, M. and Fogarty, L. (2013b). Decision making for participation in dementia research. American Journal of Geriatric Psychiatry, 21, 355–363.Google Scholar
Connell, C. M., Shaw, B. A., Holmes, S. B. and Foster, N. L. (2001). Caregivers’ attitudes toward their family members’ participation in Alzheimer disease research: implications for recruitment and retention. Alzheimer Disease and Associated Disorders, 15, 137–145.Google Scholar
Cooper, C., Tandy, A. R., Balamurali, T. B. S. and Livingston, G. (2010). A systematic review and meta-analysis of ethnic differences in use of dementia treatment, care, and research. American Journal of Geriatric Psychiatry, 18, 193–203.Google Scholar
Corbin, J. and Strauss, A. (2008). Basics of Qualitative Research, 3rd edn. Thousand Oaks, CA: Sage Publications.Google Scholar
Dunn, L. B. et al. (2013). “Thinking about it for somebody else”: Alzheimer's disease research and proxy decisionmakers’ translation of ethical principles into practice. American Journal of Geriatric Psychiatry, 21, 337–345.Google Scholar
Etters, L., Goodall, D. and Harrison, B. E. (2008). Caregiver burden among dementia patient caregivers: a review of the literature. Journal of the American Academy of Nurse Practitioners, 20, 423–428.Google Scholar
Flick, U. (2006). An Introduction to Qualitative Research. Thousand Oaks, CA: Sage Publications.Google Scholar
Grill, J. D., Monsell, S. and Karlawish, J. (2012). Are patients whose study partners are spouses more likely to be eligible for Alzheimer's disease clinical trials? Dementia and Geriatric Cognitive Disorders, 33, 334–340.Google Scholar
Grill, J. D., Raman, R., Ernstrom, K., Aisen, P. and Karlawish, J. (2013). Effect of study partner on the conduct of Alzheimer disease clinical trials. Neurology, 80, 282–288.Google Scholar
Grill, J. D., Zhou, Y., Karlawish, J. and Elashoff, D. (2014). Does study partner type impact rate of Alzheimer's disease progression? Journal of Alzheimer's Disease, 38, 507–514.Google Scholar
Karlawish, J., Cary, M. S., Rubright, J. and Tenhave, T. (2008). How redesigning AD clinical trials might increase study partners’ willingness to participate. Neurology, 71, 1883–1888.Google Scholar
Karlawish, J. H., Casarett, D., Klocinski, J. and Sankar, P. (2001). How do AD patients and their caregivers decide whether to enroll in a clinical trial? Neurology, 56, 789–792.Google Scholar
Knoblauch, H. (2005). Focused ethnography. Forum Qualitative Sozialforschung/Research, 6, Art. 44.Google Scholar
Lingler, J. H., Parker, L. S., KeKosky, S. T. and Schulz, R. (2006). Caregivers as subjects of clinical drug trials: a review of human subjects protection practices in published studies of Alzheimer disease pharmacotherapies. IRB: Ethics & Human Research, 28, 11–18.Google Scholar
Miles, M. B. and Huberman, A. M. (1994). Qualitative Data Analysis, 2nd edn. Thousand Oaks, CA: Sage Publications.Google Scholar
Patton, M. Q. (2002). Qualitative Research and Evaluation Methods, 3rd edn. Thousand Oaks, CA: Sage Publications.Google Scholar
Prince, M., Prina, M. and Guerchet, M. (2013). Policy Brief for Heads of Government: The Global Impact of Dementia 2013–2050. London, England: Alzheimer's Disease International.Google Scholar
Schneider, L. S. et al. (2006). ADCS Prevention Instrument Project: ADCS-Clinicians’ Global Impression of Change Scales (ADCS-CGIC), self-rated and study partner-rated versions. Alzheimer Disease & Associated Disorders, 20, S124–S138.Google Scholar
Seeheer, K. M. et al. (2014). Correlates of psychological distress in study partners of older people with and without mild cognitive impairment (MCI) – the Sydney Memory and Ageing Study. Aging & Mental Health. Epublished ahead of print, doi:10.1080/13607863.2013.875123.Google Scholar