Recruitment and Retention of Women with Physical Disabilities in Health Research
Background: Inadequate participant recruitment and retention practices can affect sample representativeness and thus the generalizability of findings. Retention of participants has been examined within the literature; however, there is no consensus on best practice. Furthermore, there is a gap in understanding how to engage and retain WPDs in research.
Methods: We searched PubMED, Medline, PsychINFO, CINAHL, SCOPUS, and Google Scholar using key words recruitment, retention, attrition, and dropout. We strung key words in various arrangements including human subjects, research participants, women, clinical trial, research design, prospective research, best-practice, strategies, disability, and community-based research. Search limits were used to specify journal articles, systematic reviews, meta-analyses, and evaluation studies published from 2007-2014. Returned citations were generally disparate in their relevance to the recruitment and retention of WPDs in research. Thus, it was necessary to conduct a hand-search of each citation to identify articles.
Outcomes: Our review revealed that retention of research participants has been studied in specific populations, often related to certain health-illness conditions. Methods to promote retention of research participants are diverse and highly specific to individual studies. Although retention strategies have been explored systematically, in some cases these reviews indicated that retention efforts and outcomes are generally poorly reported, and that the diversity of strategies used by researchers makes it difficult to assess the impact of any strategy or set of strategies on retention outcomes. Furthermore, information on maximizing the retention of participants is sparse. Of note, no reviews or single studies have examined efforts to retain WPDs in prospective health research. In light of this gap we offer four principles to investigators seeking to recruit and retain WPDs. We developed these principles based on prior research experience with WPDs and tested them in a clinical trial. These principles are: 1) community-based participatory research is most effective in identifying the health-related needs of WPDs; 2) research teams that are fluid and dynamic in their membership and consistently promote the full inclusion of persons with disabilities are best situated to develop, implement, and evaluate programs impacting the health of WPDs; 3) consumer-driven interventions promote independence of WPDs in research; and 4) culturally sensitive and person-centered research implementation supports the engagement of WPDs in studies and thus their retention in research. Using these principles we achieved a retention rate of 95% in our intervention group and 67% in our control group over a period of more than one year.
Conclusions/Implications: Factors contributing to sampling bias can be minimized via the implementation of strategies geared toward promoting the retention of representative samples. Based on our prior experience, we outline four principles useful in doing research with WPDs. In our clinical trial, attention to the research approach; team composition; intervention relevance and feasibility; and implementation of culturally sensitive and person-centered research strategies were critical success factors that helped us engage and retain participants.