Cargando…

Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial

Family caregivers play an essential role in supporting the health and well-being of older adults with dementia, a population projected to increase rapidly over the coming decades. Enrolling caregivers of people with dementia (PWD) in research studies is vital to generating the evidence necessary to...

Descripción completa

Detalles Bibliográficos
Autores principales: Joshi, Sama, Park, Taeyoung, Brody, Lilla, Cruz, Kiana, Mukhi, Priya, Reid, M. Carrington, Herr, Keela, Pillemer, Karl, Riffin, Catherine
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Frontiers Media S.A. 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10083411/
https://www.ncbi.nlm.nih.gov/pubmed/37051457
http://dx.doi.org/10.3389/fpain.2023.1125914
_version_ 1785021505604681728
author Joshi, Sama
Park, Taeyoung
Brody, Lilla
Cruz, Kiana
Mukhi, Priya
Reid, M. Carrington
Herr, Keela
Pillemer, Karl
Riffin, Catherine
author_facet Joshi, Sama
Park, Taeyoung
Brody, Lilla
Cruz, Kiana
Mukhi, Priya
Reid, M. Carrington
Herr, Keela
Pillemer, Karl
Riffin, Catherine
author_sort Joshi, Sama
collection PubMed
description Family caregivers play an essential role in supporting the health and well-being of older adults with dementia, a population projected to increase rapidly over the coming decades. Enrolling caregivers of people with dementia (PWD) in research studies is vital to generating the evidence necessary to support broader implementation of efficacious intervention programs in real-world care delivery, but a range of challenges impede recruitment and enrollment of sufficiently large and representative sample sizes. In this article, we characterize the challenges and lessons learned from recruiting caregivers of PWD to participate in a pilot randomized control trial. We utilize Bronfenbrenner's ecological model to categorize the challenges into three levels: individual (i.e., understanding caregivers’ time constraints and motivations), community (i.e., reaching underrepresented populations and accessing caregiver support groups) and institutional (i.e., obtaining informed consent and navigating research registries). We found that establishing rapport and maintaining flexibility with participants was crucial for motivating individuals to enroll in our study. Building trust with local communities by collaborating with support group leaders, appointing a co-investigator who is already embedded within a given community, and establishing equitable partnerships with organizations increased recruitment rates. At the institutional level, engaging experts in regulatory affairs and geriatrics may help overcome barriers in obtaining approval from institutional review boards. We also recommend using research registries of individuals who offer their contact information to researchers. The lessons learned from our research—including the challenges and potential solutions to overcome them—may promote more effective and efficient recruitment in future research.
format Online
Article
Text
id pubmed-10083411
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher Frontiers Media S.A.
record_format MEDLINE/PubMed
spelling pubmed-100834112023-04-11 Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial Joshi, Sama Park, Taeyoung Brody, Lilla Cruz, Kiana Mukhi, Priya Reid, M. Carrington Herr, Keela Pillemer, Karl Riffin, Catherine Front Pain Res (Lausanne) Pain Research Family caregivers play an essential role in supporting the health and well-being of older adults with dementia, a population projected to increase rapidly over the coming decades. Enrolling caregivers of people with dementia (PWD) in research studies is vital to generating the evidence necessary to support broader implementation of efficacious intervention programs in real-world care delivery, but a range of challenges impede recruitment and enrollment of sufficiently large and representative sample sizes. In this article, we characterize the challenges and lessons learned from recruiting caregivers of PWD to participate in a pilot randomized control trial. We utilize Bronfenbrenner's ecological model to categorize the challenges into three levels: individual (i.e., understanding caregivers’ time constraints and motivations), community (i.e., reaching underrepresented populations and accessing caregiver support groups) and institutional (i.e., obtaining informed consent and navigating research registries). We found that establishing rapport and maintaining flexibility with participants was crucial for motivating individuals to enroll in our study. Building trust with local communities by collaborating with support group leaders, appointing a co-investigator who is already embedded within a given community, and establishing equitable partnerships with organizations increased recruitment rates. At the institutional level, engaging experts in regulatory affairs and geriatrics may help overcome barriers in obtaining approval from institutional review boards. We also recommend using research registries of individuals who offer their contact information to researchers. The lessons learned from our research—including the challenges and potential solutions to overcome them—may promote more effective and efficient recruitment in future research. Frontiers Media S.A. 2023-03-27 /pmc/articles/PMC10083411/ /pubmed/37051457 http://dx.doi.org/10.3389/fpain.2023.1125914 Text en © 2023 Joshi, Park, Brody, Cruz, Mukhi, Reid, Herr, Pillemer and Riffin. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) (https://creativecommons.org/licenses/by/4.0/) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
spellingShingle Pain Research
Joshi, Sama
Park, Taeyoung
Brody, Lilla
Cruz, Kiana
Mukhi, Priya
Reid, M. Carrington
Herr, Keela
Pillemer, Karl
Riffin, Catherine
Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial
title Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial
title_full Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial
title_fullStr Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial
title_full_unstemmed Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial
title_short Recruitment of family caregivers of persons with dementia: Lessons learned from a pilot randomized controlled trial
title_sort recruitment of family caregivers of persons with dementia: lessons learned from a pilot randomized controlled trial
topic Pain Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10083411/
https://www.ncbi.nlm.nih.gov/pubmed/37051457
http://dx.doi.org/10.3389/fpain.2023.1125914
work_keys_str_mv AT joshisama recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT parktaeyoung recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT brodylilla recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT cruzkiana recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT mukhipriya recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT reidmcarrington recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT herrkeela recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT pillemerkarl recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial
AT riffincatherine recruitmentoffamilycaregiversofpersonswithdementialessonslearnedfromapilotrandomizedcontrolledtrial