TY - JOUR
T1 - Recruitment of caregivers into health services research
T2 - Lessons from a user-centred design study
AU - Leslie, Myles
AU - Khayatzadeh-Mahani, Akram
AU - Mackean, Gail
N1 - Funding Information:
We gratefully acknowledge the contributions of all family caregivers and community-based caregiver organizations, who willingly partnered with our research project.. This work was supported by the AGE-WELL Network of Centres of Excellence (NCE).
Funding Information:
This work was supported by the AGE-WELL Network of Centres of Excellence (NCE).
Publisher Copyright:
© The Author(s). 2019.
PY - 2019/5/20
Y1 - 2019/5/20
N2 - Background: With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research. Methods: We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. Results: Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – thetimeandcompromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust. Conclusions: In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.
AB - Background: With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods – successful and unsuccessful – that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research. Methods: We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. Results: Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work – thetimeandcompromises it requires – has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust. Conclusions: In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.
KW - Caregivers
KW - Elderly
KW - Health services research
KW - Patient engagement
KW - Recruitment
KW - User-centred design (UCD)
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U2 - 10.1186/s40900-019-0150-6
DO - 10.1186/s40900-019-0150-6
M3 - Article
C2 - 31139432
AN - SCOPUS:85067827485
SN - 2056-7529
VL - 5
JO - Research Involvement and Engagement
JF - Research Involvement and Engagement
IS - 1
M1 - 17
ER -