Reaching the “Hard-to-Reach”: Recruitment of Rural-Dwelling Adults With Disabilities

Abstract

Introduction: There are 46 million individuals living in rural America that require unique consideration for rural health research. Recruitment of research participants from disparity groups can be difficult as these groups can be hard-to-reach. In particular, strategies for reaching rural-dwelling Americans with disabilities are not well-documented. Furthermore, researchers sometimes underestimate the time and effort needed to recruit participants from hard-to-reach populations. The purpose of this article is to report the methods used to recruit 12 rural-dwelling adults with disabilities into a qualitative study. Method: The recruitment strategies discussed in this article were used in a grounded theory study. Results: Fifty percent of the sample in this study was recruited via a community gatekeeper, 33% responded to a classified advertisement, and 17% were recruited via the researchers’ professional networks. Discussion: Lessons learned yield insights as to effective recruitment methods for rural dwellers as well as other hard-to-reach populations.

Keywords

disability rural recruitment health disparities hard-to-reach

Rural-dwelling Americans account for a relatively small percentage of the overall U.S. population but represent a higher proportion of people living with a disability: 17.1% of rural Americans report some type of disabling condition compared with 11.7% of adults living in urban areas (Rural Research and Training Center on Disability in Rural Communities, 2017). The higher rates of disability persist across gender, race, impairment type, and all age groups. Despite the documented disparities, there is still a lack of understanding of the influence that the rural context may have on the well-being of adults with disabilities. This oversight is significant because the experience of disability is greatly influenced by culture and context (Harrison, 2011; Weaver, 2015), and the lack of representation in research has resulted in the distinct needs of rural-dwelling adults with disabilities not being considered by policy makers (Myers, Greiman, von Reichert, & Seekins, 2016).

In order to understand the unique needs of rural Americans with disabilities, researchers must be able to access this population that can be hard-to-reach due to geographical, cultural, and functional reasons. However, evidence regarding effective recruitment of individuals in this population into research studies is scant. The purpose of this article, therefore, is to report the methods used to recruit 12 rural-dwelling adults with disabilities into a qualitative investigation of well-being. This purpose is accomplished in stages. First, hard-to-reach populations are defined. Next, we discuss individual barriers and sampling issues that make rural-dwelling adults with disabilities hard-to-reach for researchers. Finally, we share lessons learned from the recruitment strategy of a recently completed grounded theory study investigating the well-being of rural dwelling, working age adults with disabilities (Thurman, Harrison, Walker, & Garcia, 2019).

Hard-to-Reach Populations

When a population is difficult for researchers to access, that population is generally labeled as hard-to-reach (Kauffman et al., 2013; Sydor, 2013; Valerio et al., 2016). Populations can be hard-to-reach because of physical location (such as remote or isolated geographical residence), social position (such as undocumented immigrant), or vulnerabilities (such as being subject to stigma). Populations can be hidden due to the lack of defined population limits or sampling parameters (Ellard-Gray, Jeffrey, Choubak, & Crann, 2015). Hard-to-reach populations often overlap with socially disadvantaged groups such as women, sexual and ethnic minorities, rural dwellers, and people with disabilities (Bergeron, Foster, Friedman, Tanner, & Kim, 2013; Cundiff, 2012; Rios, Magasi, Novak, & Harniss, 2016).

The underrepresentation of socially disadvantaged groups in health and social research is problematic for several reasons. First, results obtained from research without adequate representation of hard-to-reach groups fail to accurately reflect the breadth of the entire population (Bonevski et al., 2014). Underrepresentation of some populations prevents an adequate understanding of why health disparities exist as well as how they are sustained and reproduced (Singh, Azuine, & Siahpush, 2012). Underrepresentation in research also denies excluded groups from attaining any of the benefits associated with research participation (Dhalla & Poole, 2013). Finally, addressing the imbalance of underrepresentation of hard-to-reach populations is an issue of social justice as exclusion from health research may serve to perpetuate existing power imbalances and inequities by impeding action to improve the situation of all members of society (Bungay, Oliffe, & Atchison, 2016; Rugkåsa & Canvin, 2011). Thus, researchers interested in improving the health of the population must seek to include adequate representation of hard-to-reach and socially disadvantaged populations into research studies. While researchers today are increasingly attentive to the needs and concerns of hard-to-reach populations, difficulty in accessing members of these groups and recruiting them into research remain.

Recruitment Challenges for Hard-to-Reach Populations

When recruiting participants from hard-to-reach populations, researchers face challenges ranging from simple logistical considerations to more complex issues of cultural sensitivity (Bushy, 2008). Below, we discuss three areas of concern that can be problematic for adequate sampling and recruitment of hard-to-reach populations and to which we paid particular attention in this study investigating well-being among rural-dwelling adults with disabilities (Thurman, Harrison, Walker, & Garcia, 2019).

Identifying Participants

The first challenge to overcome when conducting research with hard-to-reach populations is in identifying potential participants within that population. For example, in the current study, considerations regarding disability identity had to be taken. A general definition of disability identity entails a positive sense of self as a person with a disability and a feeling of connection to and solidarity with other members of the disability community (Dunn & Burcaw, 2013; Olkin & Pledger, 2003). Disability identity has also been characterized as a unique phenomenon that shapes individuals’ ways of seeing themselves, their bodies, and their way of interacting with the world (Forber-Pratt, Lyew, Mueller, & Samples, 2017). However, many individuals who live with disabling conditions do not consider themselves to have a disability, do not believe that others view them as disabled, and do not claim a disability identity (Chalk, 2016; Iezzoni, 2000). Furthermore, development of disability identity in rural areas may be unique because the relative isolation and the geographical distance between individuals could prevent the formation of strong positive relationships between individuals with disabilities. Thus, an important question for researchers to consider is “when do people consider themselves to be persons with disabilities” (Olkin & Pledger, 2003)? Recruitment may be ineffective or, at the very least, limited if study advertisements call for “people with disabilities” or “disabled persons” because this language does not capture individuals who may experience certain degrees of difficulty in daily activities but do not identify themselves as disabled.

Accessing Participants

After potential participants have been identified, accessing those participants can become the next challenge. By definition, rural communities are geographically dispersed, making it difficult to contact and interview many of its members. There are two key strategies used by researchers to access hard-to-reach populations. The first is accessing participants through community partners and agencies. However, for researchers working in rural and remote areas such as in the current study, community partners and agencies may not be available. Indeed, a barrier to rural recruitment identified in the literature includes the lack of health care providers, health services, and infrastructure for research (Loftin, Barnett, Bunn, & Sullivan, 2005). Researchers also use community-based sampling to gain access to hard-to-reach populations. Community-based sampling includes methods such as snowball sampling wherein initial informants nominate or refer additional participants that meet the eligibility criteria of the research under study (Sadler, Lee, Lim, & Fullerton, 2010). Community-based sampling also includes indirect methods such as advertisements or group presentations (Mirick, 2016). Community-based approaches allow researchers to access the most at-risk individuals and groups, but the time required to locate, select, and develop rapport has been described as a major barrier to use of this type of sampling (Abrams, 2010).

Mistrust of the Research Process

Once hard-to-reach populations have been identified and accessed, a third barrier to research with traditionally underserved groups is overcoming the well-documented barrier of mistrust of the research process or of researchers themselves (Bonevski et al., 2014). Hard-to-reach populations, including rural dwellers and people with disabilities, can be resistant to participating in research studies for cultural, social, or developmental reasons (Lindenberg, Solorzano, Vilaro, & Westbrook, 2001; Murphy & Merenstein, 2011). Often, this mistrust stems from historical violations by researchers or by the academic process more generally (Ellard-Gray et al., 2015). For example, people with disabilities have been portrayed by researchers as lacking autonomy and agency and in need of sympathy (Cuddy, Fiske, & Glick, 2007; Robey, Beckley, & Kirschner, 2006). This inaccurate representation serves to stigmatize and oppress people with disabilities who may, in turn, avoid research participation so as to not contribute to further misrepresentation. A different example includes the cultural misgivings and inherent distrust of outsiders on the part of rural dwellers (Bigbee, 1993; Carpenter & Theeke, 2018; Loftin et al., 2005). Despite the challenges that are often inherent in reaching hard-to-reach groups, there are strategies that can be used to minimize them.

Recruitment Methods

In order to overcome anticipated challenges to recruitment for this study investigating a hard-to-reach population, we developed a strategy employing multiple recruitment methods (Patton, 2015). That strategy is described later. Our purpose in conducting this constructivist grounded theory study that was conducted over 9 months, was to explore the processes by which rural-dwelling adults with disabilities define and pursue well-being. To be eligible to participate in this study, participants had to meet all of the inclusion criteria: (a) live in a county in Texas classified as “noncore” according to the Office of Management and Budget (OMB; typically indicating less than 10,000 residents), (b) be community dwelling, (c) be able to communicate in English or via a sign language interpreter, (d) be between 35 and 70 years, and (e) answer “yes” to at least one of the questions from the American Community Survey that asks about ambulatory, vision, or hearing difficulties (U.S. Census Bureau, 2014). Individuals who did not meet these criteria or who reported cognitive impairment were excluded from this study.

Our first step in development of our recruitment methods was to identify the 74 counties in Texas defined as “noncore” according to the OMB and located these on a map. Because of the expansive geography of the state of Texas and to maximize study resources, we targeted recruitment efforts in six noncore counties in close geographic proximity to the university at which the research team was located. We also determined these six counties to offer diverse topography, infrastructure, industry, and economic opportunity, thus providing the possibility of diverse experiences within the rural context. After we selected the six target counties, community gatekeepers, stakeholders, and resources in each of them were identified. Consistent with purposeful sampling, we targeted those within these counties who met the initial criteria of age, rural residence, and disability. Thus, a combination of practical and theoretical considerations drove the initial recruitment methods.

Overcoming Mistrust

The early recruitment phase of this study can be characterized as “pavement hitting” due to the extensive amount of time spent in the targeted communities seeking to establish trust and overcome the challenge of being outsiders. During the first months of the study, the first author (who collected the research data) sought to become a known presence in each community. For example, during initial visits to the targeted counties, she visited local barbershops, pharmacies, retail stores, American Legion Halls, health department offices, community action agencies, and other community entities to introduce herself and the study and to ask for suggestions as to how to access the target population. Eating at local restaurants, shopping at local retail shops, and generally spending an extended amount of time in each small community served to acquaint community members with a new face. During this early phase of recruitment, we also identified specific community gatekeepers with whom to make initial contact. Establishing a presence in multiple communities required a larger time commitment on behalf of the first author than was anticipated before beginning study recruitment. The time commitment was necessary, however, and allowed the researcher to explain the study and its purposes, to answer questions that community members had, and to establish trust in the community.

Identifying the Population

As previously discussed, the development of a disability identity in rural areas may be unique, and we theorized that rural-dwelling individuals with disabilities would be likely to identify with a rural identity even if they did not subscribe to a disability identity. This was an important consideration because evidence suggests that people with disabilities identify with the aspect of their identity that is most salient in a given context (Bogart, Rottenstein, Lund, & Bouchard, 2017; Wang & Dovidio, 2011). Thus, for people living in rural areas of the United States who often pride themselves on their independence and ability to persevere, priming the rural identity may be more useful as a recruitment tool than would be priming the disability identity. Therefore, we sought to prime potential participants’ rural identity instead of appealing to a disability identity, and we avoided using the terms “disability” or “disabled” on study materials. The study was advertised as “Wellbeing in Rural Texas,” and study flyers used a bucolic scene of a sunset over a rural farmscape to attract readers. The three questions from the ACS regarding vision, hearing, or ambulatory difficulties were included on the flyer to describe inclusion criteria. Similarly, the classified advertisement used for recruitment avoided the term disability.

Accessing the Population

Consistent with the study’s aims of investigating the sociocultural environment of community-dwelling adults with disabilities, there were no readily apparent community agencies with which we could collaborate. Because we were not seeking to test a clinical intervention, it was not appropriate to partner with physicians or hospitals as we also wanted to access individuals who may not have access to primary or acute health care services. We did, however, introduce our study and distribute study flyers to outpatient health care facilities as a method of establishing trust and familiarity within the community. Furthermore, due to the limited availability of services in rural and remote areas, there were no local support groups for persons with disabilities with which we could work to recruit individuals into this study.

Prior evidence suggests that culturally appropriate strategies for recruiting rural dwellers include posters and flyers in doctors’ offices, clinics, churches, and barbershops (Loftin et al., 2005). Accordingly, during the “pavement hitting” phase of recruitment, we distributed flyers to many of these types of establishments. We also placed classified advertisements in two of the targeted counties. The first ad ran weekly for four consecutive weeks during the first month of recruitment. The second ad ran weekly in an adjacent county for four consecutive weeks during the third month of recruitment. We also relied on gatekeepers to help us spread the word about the study. For example, one pastor with whom we talked was supportive of the study and enthusiastically agreed to support recruitment efforts. Therefore, his church advertised the study on their Facebook page, via their weekly e-mail newsletter, and in their Sunday church bulletin.

Discussion

Between June 2017 and January 2018, 22 people contacted the primary investigator via phone or e-mail and/or gave a gatekeeper a message consenting for contact. Each potential participant was called by the first author, screened for inclusion, and informed of the study details. Ten of the individuals who were screened for inclusion were ultimately ineligible to participate. In order of prevalence, the main reasons for ineligibility for the study were not having a disability (4 of 10), being over the age of 70 years (3 of 10), not living in a noncore county (2 of 10), and having a cognitive impairment (1 of 10). After these preliminary steps, 12 people remained qualified and interested in the study yielding a participation rate of 54.5%. No one who was eligible for the study declined to participate after being informed of the study details.

While the sample size of this study was small, lessons learned from the recruitment strategies can nevertheless shed light on effective ways of reaching this hard-to-reach population. In addition to the challenges related to geographical isolation and limited infrastructure for research, we also had to consider how to overcome the label of “outsiders,” and how to identify and access this hard-to-reach population. Recruitment for this study was further complicated by the focus of rural dwellers with disabilities who may be even more difficult for researchers to access due to functional limitations that may affect ability to communicate or ambulate. The multiple recruitment strategies used ultimately paid off by yielding the heterogeneous sample of participants necessary for gaining in-depth perspective about the theoretical concepts identified via data collection and analysis.

Consistent with previous researchers who identified face-to-face approaches with gatekeepers and potential research participants as one of the most productive methods of recruitment (Joseph, Keller, & Ainsworth, 2016), 50% (n = 6) of the sample in this study was recruited via a community gatekeeper. The initial efforts to build trust with the community allowed us to identify gatekeepers as well as to access participants that would not have been possible without the extensive time spent “pavement hitting.” Previous researchers have identified churches as an important partner for recruitment of research participants with physical disabilities in rural Louisiana (Davidsson & Södergård, 2016). Additionally, the recruitment strategies most often suggested by rural participants in a study investigating recruitment barriers and motivators was working with churches and other community-based organizations (Friedman, Foster, Bergeron, Tanner, & Kim, 2015). Therefore, the first author approached multiple churches and met in-person with administrative staff and/or pastors.

Four of the participants in this study were recruited via a church-based gatekeeper. It is important to note, however, that only one of these four individuals was a member of the church from which they were recruited. Of the remaining three participants, one was a patron of the food pantry hosted by a church. A different participant attended a weekly social function hosted by a local church and saw a study flyer posted there. The third participant was the pastor of a local church who was recruited via his administrative assistant with whom the first author met early on during recruitment efforts. The diversity of ways in which participants were recruited via church-based gatekeepers supports the notion that churches maintain a unique cultural and institutional space in rural communities (Plunkett, Leipert, & Olson, 2016). Furthermore, a review of rural definitions of health found that many rural dwellers define health in terms of their ability to attend church and church activities (Gessert et al., 2015). Therefore, it is recommended that researchers consider meeting with local pastors and other church staff early in the study development and participant recruitment phases in order to tap into the networks they have available.

Another source of community gatekeepers that proved to be fruitful for recruitment efforts were Veteran Service Officers (VSOs). A VSO is an individual who advocates for veterans’ benefits and is also responsible for having technical knowledge of regulation and law as it pertains to Veterans Affairs matters. The first two VSOs that were contacted both expressed interest in the study. On learning the inclusion criteria, both offered to participate as they met the criteria. We did not approach any other VSOs after the inclusion of these two as the perspective of a rural-dwelling veteran was saturated. However, the insights shared by these participants were integral to the theory of well-being that was ultimately developed, and the willingness of these community members to participate in this study suggests that VSOs may be a fruitful way to reach rural-dwelling adults.

Thirty-three percent (n = 4) of participants were recruited either directly or indirectly by a classified advertisement. That is, three participants responded directly to the ad, and one of those participants recruited a peer. The utility of newspaper advertisements for research recruitment is in keeping with previous research investigating vulnerable populations such as people with multiple sclerosis (Stuifbergen, 1999) and hard-to-reach populations such as Korean Americans (Han, Kang, Kim, Ryu, & Kim, 2007) and women living in socioeconomically disadvantaged areas (Cleland & Ball, 2010). Specifically, Han et al. (2007) reported recruiting 29% of their sample in a clinical trial via ethnic newspapers, and Cleland and Ball (2010) reported recruiting 20% of their sample for a qualitative study via local newspapers. Thus, the success of this traditional print media format for recruitment of rural populations should not be surprising. Small-town and local community newspapers are often viewed as historical and cultural institutions that are trustworthy sources of information regarding local events and happenings. This is key as evidence suggests that trust is an important component of the relationship between information sources and the consumer of information (Clayman, Manganello, Viswanath, Hesse, & Arora, 2010). A defining feature of trust is that it is relational (Gilson, 2003), and small, community newspapers may provide this sense of trust and relationality. For people with functional limitations who may experience more difficulty in getting out on a regular basis or accessing information in diverse formats, local newspapers may be even more important. Therefore, it is suggested that despite the cost associated with traditional classified advertising, researchers seeking to access rural-dwelling adults with disabilities consider this as a recruitment strategy.

Professional networks were also crucial to the recruitment efforts of this study. The theoretical sampling required for constructivist grounded theory dictated that we include the perspective of individuals who could share diverse experiences of the concepts under study. Thus, we tapped in to our own professional networks in order to ensure representation of racial minority groups as well as disability stemming from a chronic neurological condition. It should be noted, however, that we were only able to recruit one racial minority participant into this study, and this is a limitation of the study findings. We attribute this limitation to the short time period in which the study was conducted as opposed to mistrust of the researcher or research process. Three additional racial minority participants consented to be contacted by the primary investigator but were ultimately ineligible as they did not report a disability.

While not a recruitment strategy, an important lesson from this research study is that altruism was an important motivator for participants. Many participants were interested in how the results of the study would be used, expressed appreciation for the focus on the unique needs of this population, and stated that they were appreciative of the opportunity to provide input. This is in keeping with research reported by Green et al. (2013) who reported that increasing one’s own knowledge or advancing medicine was an important motivator of their study participants. Newington and Metcalfe (2014) also found that altruism was the most important factor influencing individuals’ decision to participate in research. Furthermore, three of the participants in this study refused the financial incentive. Each of them communicated their desire to help with the research, but they did not have interest in taking the $25.00 incentive. Similarly, Loftin et al. (2005) reported that several of their rural African American study participants expressed a desire to contribute to the community and subsequently donated the $10.00 participant incentive back to the research study. Thus, researchers seeking access into hard-to-reach populations should carefully weigh how to discuss the importance of the research for the greater good and should recognize that financial incentives may not be sufficient motivation for participation.

Conclusion

Rural-dwelling Americans living with disabilities require unique consideration for rural health research. Because accessing individuals in this population can be difficult, researchers must carefully consider recruitment strategies prior to initiation of any study. However, it is possible to overcome cultural, functional, and geographical challenges with time, effort, and persistence. In this article, we report the multiple strategies and careful consideration of anticipated challenges when beginning recruitment of rural adults with disabilities for a qualitative study of well-being and the steps we took to overcome them. Importantly, while the lessons shared in this article are from an investigation of one specific hard-to-reach population, many of these considerations apply to hard-to-reach populations in general. Indeed, key to our recruitment success was the time spent developing relationships with community gatekeepers and familiarizing ourselves with cultural institutions, and these are steps that researchers working with any hard-to-reach population should consider.

Footnotes

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported in part by the Robert Wood Johnson Foundation. The views expressed here do not necessarily reflect the views of the Foundation. Support was also provided in part by the Southern Nursing Research Society, the Center for Excellence in Aging Services and Long-Term Care, and the Cain Center for Nursing Research at the University of Texas at Austin School of Nursing.

ORCID iD

Whitney A. Thurman

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