Recruiting and Retaining People With Disabilities for Qualitative Health Research: Challenges and Solutions

Research funding

Research funding, both federal and foundation, tends to be organized diagnostically. This organization may limit the ability to secure funding that examines the cross-disability experience and identifies the interrelationships between social determinants of health and the disability experience. Overly strict, but often poorly justified, exclusion criteria may omit people with complex disabilities or multiple comorbidities from participating in the research. In turn, this can limit the ability of research to develop nuanced understanding of the lived experience disability within and across diagnostic groups.

Regulatory guidelines

The designation of PWD as a vulnerable population, while necessary to ensure that decision-impaired individuals are not coerced or harmed in research, can lead to exclusion. Regulatory body guidelines can render ethics committees unable to approve disability research from happening in the first place. A person must be able to understand relevant information, to appreciate the current situation and its consequences, to manipulate information rationally, and to communicate his or her choice (Code of Federal Regulations, 2009). Unfortunately, guidelines intended to protect individuals’ rights and autonomy can result in excluding and discriminating the groups those guidelines are trying to protect (Smith, 2008). Moreover, paternalistic attitudes about the need to protect PWD may lead to an overemphasis on research risks without recognizing the potential benefits to individuals with disabilities and the disability community at large (Boxall & Ralph, 2011; McClimens & Allmark, 2011).

Lack of PWD in research

As a whole, there is lack of PWD working in the research enterprise. Consequently, there is potential for nondisabled researchers to misrepresent and to misinterpret disabled people’s experiences and interests because they themselves have never experienced what it is like to be disabled (Stone & Priestley, 1996). Even when PWD are active in the planning and implementing of research, they infrequently play the lead role (Puyalto, Pallisera, Fullana, & Vila, 2016; Strnadovà, Cumming, Knox, & Parmenter, 2014; White & Morgan, 2012). Tregaskis and Goodley (2005) contended the lack of researchers with disabilities is due to a society that perpetuates the idea that dependence on care and support is shameful and/or undesirable or a built environment that does not support their participation. Indeed, discrimination and structural barriers within academia can further limit disabled researchers from engaging fully in the process (Miles, Nishida, & Forber-Pratt, 2017; Sheldon, 2017). When PWD are not able to take leadership questions in the research design process, important questions can go unasked and unexplored. However, Sheldon (2017) problematizes assumptions that positionality as a person with disability automatically grants the researcher an emic perspective. Rather, Sheldon asserts that researchers with disabilities can help to destabilize dominant understandings of disability.

Time and resource constraints

Researchers’ own lack of time and resources is an antecedent to recruitment challenges. It is also one of the reasons for over-samplings of convenience or of easier-to-reach individuals. Participant recruitment, particularly in the absence of direct access to a population, can require more time and resources than anticipated to achieve saturation (Becker, Roberts, Morrison, Silver, & Taub, 2004; Nary, Froehlich-Grobe, & Aaronson, 2011). However, funding timelines are often rigid, failing to accommodate changes in methodology when a given approach is not working. When flexibility is not given, “corners” are cut and the quality of the research suffers (Barnes, 2009). Similarly, the time span from funding announcements to application deadlines too often are brief; therefore, they do not accommodate the extra time needed to obtain ethics approval (a stipulation for some funding agencies) in a way that attends to regulatory body’s concerns about working with vulnerable populations or that supports community-based participatory approaches (Gustafson & Brunger, 2014).

Recruitment processes

In spite of the prevalence of disability throughout society, PWD are a hard-to-recruit population. Some reasons include their geographic and social dispersion (PWD usually are not clustered in particular communities or family units), the social devaluation of disability (which makes some people unwilling to self-identify as disabled), and the heterogeneous nature of the disability community (which makes it challenging to clearly define sampling parameters) (Ellard-Gray, Jeffrey, Choubak, & Crann, 2015). In addition, recruitment materials may render research inaccessible before recruitment has begun. These materials can be text-heavy, which may disadvantage people with reading disabilities, visual impairments, or low literacy skills.

A digital divide also might prevent recruitment materials from reaching a broader disability population. Citing financial difficulties as the most common barrier, PWD have less access to technology (Abascal & Civit, 2000; Davidson & Santorelli, 2009; Kane, Jayant, Wobbrock, & Ladner, 2009; Keating, Nagai, Hadder, & Kowalsky, 2007). When they do have access, smartphones tend to be their only technology device and due to economic disadvantage, experience more cellular service disruptions. These disruptions and singular technology access point lessens the likelihood that PWD will learn about digitally promoted research opportunities.

Data collection

Data collection can be exclusionary even before it has begun. Consent material often contains academic language and jargon that is difficult for some PWD to understand. As a result, they may not join a study simply because they do not understand its purpose. Some regulatory bodies permit a third party (e.g., a family member, physician, or legal caretaker) to provide consent on behalf of the person with the disability; however, there are times in which that person is unknown, overburdened, disinterested (Lennox et al., 2005), or refuses access to the participant (Goldsmith & Skirton, 2015).

Also, while qualitative research data collection methods are broad and encompassing, without accommodations, they can be exclusionary. Some data collection methods, such as interviews, privilege the perspectives of people with strong verbal and communication abilities (Becker et al., 2004). Given Denham and Onwuegbuzie’s (2013) finding that 71% of empirical articles over a two-decade span in The Qualitative Report relied on interview data collection, there is just cause for concern that many of these studies, without intending to do so, excluded potential participants due to a lack of planned accommodations.

On-site requirements for data collection can exclude viable participants, as well. Lack of accessible transportation, buildings, and transitions (e.g., sidewalk), as well as weather, geography (urban, rural), and topography (e.g., hills, ground cover, etc.) can complicate movement. Also, for people with cognitive, social, and/or emotional impairments, factors such as noise, air quality, and crowds can impede initial or continued participation. Although digital and phone technology may offer an alternative to on-site data collection (e.g., phone interviews and video conferencing), these methods may be cost prohibitive for some individuals as it uses vital and costly data (for those individuals with only a mobile phone) or requires technology that they might not be able to afford (e.g., computer or tablet connected to the Internet) (Chadwick, Wesson, & Fullwood, 2013; Hoppestad, 2013).

Finally, data collection methods requiring excessive amounts of time or that occur at repeated intervals can make extended participation challenging, thus impacting retention rates. PWD spend tremendous time and energy coordinating services, managing health and health care, and self-advocating in a society rife with physical, social, and financial barriers to participation and social inclusion (Hammel et al., 2015). In addition, issues of fatigue, comorbidities, and mobility challenges can make participation difficult (Ellard-Gray et al., 2015). As a result, PWD, in the face of other life stressors, may deprioritize research that does not address their immediate needs or that they perceive does not directly relate to their lives (Provencher, Mortenson, Tanguay-Garneau, Bélanger, & Dagenais, 2014).

An outcome of these collective barriers is researcher’s oversampling of more accessible disability communities (Kroll, Barbour, & Harris, 2007) and of PWD who have more resources/supports and thus may have more capacity to participate in research (Bigby, Frawley, & Ramcharan, 2014). Kroll et al. (2007) referred to such participants as “professional subjects.” The concern with oversampling is that these individuals, compared with other PWD, may be better connected to resources and support networks, know more about their condition, and might show greater assertiveness in expressing their views, needs, and experiences (Becker et al., 2004). In addition, when the same individuals are repeatedly asked to participate in research, they may develop research fatigue, limiting their willingness to participate (Kroll et al., 2007). Given the nature of some qualitative methods, such as narrative inquiry or ethnography, in which there may only be a few participants, recruitment that most accurately illuminates people’s stories or describes shared experiences is essential.

Misuse of research data

Per Barnes (2003), some mistrust stems from politicians, policy makers, and the media’s misuse of research data. To some extent, this is because contributions are not returned back to the disability community and public, or to the governmental bodies, volunteer agencies, and service providers who serve PWD, in a way that is beneficial or addresses raised issues. This is disenfranchising to those individuals or organizations the research seeks to represent.

Inaccessibility of academic text

Related to contributions not being returned is the inaccessibility of academic texts, denying PWD the opportunity to act on the findings or to request funding to support research outcomes (Kitchin, 2000). Participants who do not see results of the research in which they participated or in a way accessible to them may feel cheated. Researchers might neglect this step due to limitations in time and resources, or simply that they are unaware of or do not acknowledge the importance of the results to participants and their support network (Iacono, 2006).

Power differentials

Mistrust in research also may stem from power differentials that exist between PWD and health researchers. PWD have been medicalized, scrutinized, and surveilled by researchers and service providers who judge who is “disabled enough” to deserve supportive services and resources and who are “capable enough” to enjoy full and equal participation in all aspects of society (Magasi, 2012; Magasi & Hammel, 2009). As a result, PWD may see academic researchers, regardless of their philosophical or epistemological orientation, as one more person passing judgment or profiting off their experiences.

Lack of existing relationships

In other instances, it is the lack of existing relationships (e.g., between the researcher, the PWD, and/or gatekeepers) that contributes to these power differentials. Without relationships, some PWD feel “mined” by researchers (Duran, Wallerstein, Minkler, & Foley, 2012; Kitchin, 2000) or uncomfortable with disclosing personal information to someone they do not know (Bell et al., 2008). In part, some of this is due to past situations where trust was broken (McDonald, Schwartz, Gibbons, & Olick, 2015) or where there was fear of retaliation if they were to share undesirable information (McDonald et al., 2015).

Gatekeepers who are hard-to-reach, disinterested, overburdened, or skeptical

Another challenge in the recruitment and retention of PWD is gatekeepers who are hard-to-reach, disinterested, overburdened, or skeptical. Gatekeepers can be both formal (e.g., administrator of a care facility, physicians, community leaders, insurers, etc.) and informal entities (e.g., support staff and family members). Regarding formal gatekeepers, large organizations may have tiers of management through which researchers must wade before reaching the person who can approve recruitment (Lennox et al., 2005). Also, service providers may lack the resources to fulfill their roles within research projects (Crook, Tomlins, Bancroft, & Ogi, 2015) or they may delegate the responsibility to support staff who themselves have no time, interest, or incentive to assist (Becker et al., 2004; Stoneman, 2007).

Like formal gatekeepers, informal gatekeepers, such as family members and caregivers, might not have the time or energy to participate and thus perceive research as an optional, additional load (Lennox et al., 2005). Some caregivers are concerned about the loss of medical benefits for their care group if they participate (Becker et al., 2004) or their care group’s choice to participate (Goldsmith & Skirton, 2015; McDonald et al., 2015). In many instances, though, the reasons for gatekeepers blocking access to patients is unknown (Nary et al., 2011), thus making this challenge, along with others presented in this section, difficult for researchers to overcome.