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

With increasing attention to patient and public engagement in many aspects of the healthcare system, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. Using the experiences of a research project that sought to engage family caregivers in the co-design of technology to better support their work, this paper describes the specific recruiting strategies we used, and identifies general challenges we faced. We describe the successes and drawbacks of various recruitment strategies. We found that recruitment through community-based caregiver organizations is the most effective and least costly mechanism. However, this recruitment work requires a considerable amount of time for building relationships, aligning values, and establishing trust. We identify how existing research funding models may not allow for the relationship building that is central to engaging members of the public in research. These funding models can also force researchers into solving problems they think exist, rather than allowing them to collectively define problems and co-design solutions in partnership with members of the public.

Family caregivers¹ are a heterogeneous population [1] who make up a significant unpaid labour force that provides the vast majority of care to elders and others with chronic health conditions and/or physical and mental disabilities [2]. Family care work, driven by demographic and economic change, is on the rise [3] and research into the conditions of, and supports for, this unpaid work is increasing exponentially. Along with attention to policy initiatives addressing labour laws and providing other statutory accommodations for caregivers [4–6] a major focus of both scholars and private industry has been on developing technologies [7] to make caregiving sustainable for family caregivers [8–10] by reducing their burden [11–13]. User Centered Design (UCD) approaches to engaging family caregivers as end users of these technologies are central to this field of research and the agencies that support it such as AGE-WELL NCE in Canada. UCD is a ‘co-design’ or ‘participatory design’ [14–19] process that focuses on partnering with end-users and designing with family caregivers not for them [20, 21]. Co-design, a mainstream term in health services research, refers to shared leadership and partnership between designers and end-users [22]. Co-design participants are assumed to hold different values, perspectives, and interests with final products emerging from shared visions, co-learning, and mutual understanding [23]. As such, UCD reflects a significant shift in the traditional designer-client relationship as it seeks to engage end users as equal partners with designers in the definition and resolution of particular challenges [24–27].

Although UCD co-design is considered a promising practice, the ethics and practicalities of integrating family caregivers into technology research remain fraught. Although family caregivers may be highly motivated to participate in research, access to these individuals by researchers, especially junior researchers with limited resources, is a known challenge [28, 29]. These family caregivers are generally time-poor [28, 30], with many of them juggling work, family, and caregiving responsibilities [31–33]. Recruiting those who care for persons with Alzheimer’s Disease and dementia can be even more challenging as they are often: socially isolated by their caregiving role and thus difficult to contact; unable to find someone to look after their frail care recipient; and lack access to transportation [31, 34]. Family caregivers’ mistrust of the scientific community and institutions is also reported as a significant barrier to successful recruitment into research [35]. The literature suggests that recruiting these unpaid private citizens into research aimed at improving their lives is difficult indeed [36–40].

Previous research examining the recruitment of caregivers in health services research [36, 41, 42], has tended to focus on minority research participants in the clinical trial setting [36, 43] rather than UCD projects. As the time and work required to identify, recruit and retain these clinical trial participants has increased, the field has turned to professional recruitment coordinators both to liberate lead investigators’ time, and to counter potential participants’ hesitance [44]. Other more recent efforts at professionalization in community and patient engagement for research have focused on creating in-house teams to identify community stakeholders, prepare researchers, and facilitate interactions between researchers and the community [40, 43, 45–48]. Despite these efforts, challenges in recruitment and retention persist [35, 40, 46, 47]. Where advice for UCD researchers has been published, it is highly contextual [40, 48–54] suggesting there are no universal fixes for a universal challenge. There is limited research on the challenges of recruiting caregivers outside the clinical trial environment, leaving those interested in patient engagement and participation in qualitative research with few options.

Similarly, the literature presenting best practices and strategies for successfully recruiting caregivers in UCD co-design research is scant [55]. This is despite the strong emphasis on ‘democratization of research’, and empowerment of patients and members of the public/community as research partners [56]. While this deficit is particularly acute for graduate students with limited resources as well as researchers without grants or university support [57], even early career, or well-established researchers with funding can find recruiting for UCD within the confines of grant development and execution cycles challenging. This paper draws on a specific case study of a particular co-design research project, identifying a number of challenges and counter strategies that we deployed in the course of that project to recruit family caregivers. As a resource for other researchers, we offer an account of the recruiting techniques we deployed, highlighting the time commitment and trust building issues embedded in them. We show how to develop the relationships that are a necessary part of creating the conditions that enable true co-design (i.e. partnering with end-users). We also make recommendations targeting funding agencies interested in the specifics of recruiting for co-design research.

The case study at the centre of this paper is a project funded by AGE-WELL Network of Centres of Excellence (NCE). AGE-WELL is a Canadian, federally funded collaborative entity supporting research at the intersection of technology and aging. Our specific UCD project aimed to co-design a smartphone-based application to assist family caregivers providing care for elders. We engaged family caregivers in two in-person Focus Group (FG) meetings, each lasting for two hours, with a gap of at least one week between the first and the second FG. Over the course of the two FGs, family caregivers were invited first to share and discuss their goals and aspirations, and then to imagine feasible technology-enabled supports or paths towards achieving them. As part of our training and mentorship program and to ensure a shared understanding of the research project and to develop trust and relationships, we engaged with family caregivers expressing an interest in our research, through a number of email exchanges prior to convening the FGs. In those emails, family caregivers were given information about the research, their potential role in it, and our expectations. They were also encouraged to ask any questions. At the start of each FG, the lead researcher shared the same information with family caregivers while elaborating on the components of the consent form in detail. We conducted FGs until a total of 25 family caregivers were recruited. Our main recruitment criteria were: 1) being below the age of 65 (with the assumption this population group are more likely to adopt new technology), 2) being a caregiver to a senior citizen over the age of 65 (caregiving for the adults was the focus of the project), 3) living preferably in the Calgary or Edmonton area (driven by the time and costs associated with traveling across the province or country), 4) preferably working, either part-time or full-time (again, assuming this group is more likely to adopt new technology).

In our application to AGE-WELL, we initially proposed to employ a three-step UCD process that included: 1) Citizen panels [35, 46] to discuss and identify caregivers’ needs; 2) Delphi method [5, 31, 58–60] to prioritize identified needs; and 3) Design Thinking method [46] to co-create a basic mock-up of a software solution to the prioritized needs. Both the citizen panel and the design thinking session were to have occurred at a hotel with 25 family caregivers spending a night and day together to define their needs (step one) and co-create a software solution (step three). Unfortunately, it proved impossible to recruit caregivers for this three-step process. While large-group residential sessions have been successful for improving quality in acute care we learned from consulting with our recruitment partners that these arrangements were impractical for family caregivers, many of whom were uninterested or unable to spend such long periods of time away from their care recipient and in the company of strangers. In partnership with Caregivers Alberta (http://www.caregiversalberta.ca/), we altered our methods. This is to say, as part of a co-design process with our community partner, we made changes to accommodate limited schedules and family caregiver preferences for interaction with social acquaintances in smaller groups. Specifically, we abandoned the large group, overnight residential sessions and instead pivoted to meeting caregivers in small groups at places they found more convenient. Methodologically, we set aside Citizen Panels, Delphi, and Design Thinking, replacing them with Nominal Group Technique [61, 62] and Focus Group (FG) discussions [63, 64]. We employed NGT in the first FG to prioritise family caregivers’ goals and used open group discussions in the second FG to explore technology-enabled solutions to those prioritised goals. NGT is particularly well adapted because of its specific focus on empowering all members [65, 66]. It is a stepwise consensus-building democratic process that results in a list of collective priorities [67]. NGT’s facilitated discussions and voting allowed varied family caregivers to contribute equally to group discussions [68].

We engaged a lay representative, who is a family caregiver, as a research partner from the time of grant writing to publication of research findings. In fact, this lay representative is one of co-authors (GM). GM is affiliated by personal and professional experience with family caregiving and the formal healthcare system, and has advised on the content and direction of the research we present in the paper since its inception. GM is involved in an Alberta based citizen-led organization, IMAGINE Citizens Collaborating for Health, who wrote a letter in support of our original grant application to AGE-WELL.

A number of research funding agencies across the world including CIHR in Canada, and Patient–Centered Outcome Institute (PCORI) and Quality Enhancement Research Initiative (QUERI), both in the United States, and INVOLVE (a project established by the British National Institute of Health Research to increase public engagement in research) in the United Kingdom are now encouraging co-design research through partnership between researchers and other stakeholders including members of the public. The CIHR Strategy for Patient-Oriented Research (SPOR) is another funding partnership that CIHR formed to make co-design patient-oriented research a reality in Canada. In Alberta, the home jurisdiction for the case study at the center of this paper, Alberta Innovates - a provincial research funding agency - has introduced Partnership for Research and Health Innovation in the Health System and the Collaborative Research and Innovation Opportunities program to encourage partnership between researchers and community members. Despite these efforts, we argue that some existing funding models and grant processes tend to force researchers into solving a problem that they think exists, rather than allowing them to co-define problems and co-design solutions alongside participants. This is due, in part, to the emphasis on ‘problem solving’ rather than ‘problem definition’ or ‘problem structuring’ [86, 87] which is one of the key reasons for policy failure [40, 88]. To overcome this, we argue that granting organizations should consider seed, or incubation grants that facilitate not the presentation of pre-made research questions to nominally engaged patients, but rather the trust building and value aligning that are necessary for co-design. An example of such funding initiative is the Coalitions Linking Action and Science for Prevention (CLASP) led by the Canadian Partnership Against Cancer that offer allowances to researchers to build relationships and coalition and partner with stakeholders as a granting prerequisite. Clearly there is space, and funding, for traditional research models as well, but structural supports – in the form of time and money – for the participatory action model we are advocating here are long overdue. If we are to take engagement, at the point where it distributes the most power to patients, caregivers, or citizens seriously, reforms to granting cycles and content ought to be considered carefully by research funding agencies.

If we are to avoid the marginalization of co-design in health services research, and reap the benefits of partnership-level engagement, we suggest the following participant, and organization level changes in the funding structures: 1) At the participant level, provide seed grants for working on research proposals with patient/caregiver partners, and factor in relationship-building periods at the start of grants, 2) At the organizational level, include opportunities to build in funding to support the often small non-profit patient/caregiver organizations that researchers want to engage in their co-design/co-research processes.

Despite being best practice and an ethical imperative, patient and public engagement in health services research generally, and the recruitment of participants for UCD co-design research remains a persistent challenge. Through 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 trusted 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; they 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 being time and relationship intensive, the compromises inherent in working with caregiver organizations mean that access to the full family caregiver population, and so a ‘representative’ sample, is not a realistic expectation for funding agencies. These factors are not readily known by young researchers in the grant writing stage, which lead the research project to extend beyond the funding timeline. Moreover, effective engagement of patients/caregivers and their partnering organizations requires political support for the genuine devolution of power and decision making to patient/caregiver organizations and to the citizens and caregivers with whom they engage. Some of what we learned about engaging family caregivers and caregiver partnering organizations in research might be transferable to engaging other groups as well. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for documentation and reporting of the successful techniques that other researchers are employing to recruit and retain family caregivers in their co-design, partnership-level research.