Recruitment of caregivers into health services research: lessons from a user-centred design study

With patient and public engagementin 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 mapfor other investigators, and to make general recommendations for funding agencies interested in supporting co- design research. We used a case study methodology and employed Nominal Group Technique(NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. Employing various strategies to recruit unpaid family caregiversin a UCD project aimed at co-designingan 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 – the time and compromises 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. In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagementare planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregiversinto qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregiversin their research.