Exploring caregivers' experiences when seeking mental health care services for their children with autism spectrum disorder: A qualitative study from South Africa.

Participation in clinical research is considered a social good because it leads to biomedical discoveries that prevent and treat disease, ultimately improving public health. Even when clinical research does not directly impact individual research participants, it is described in the research ethics literature as having social value []. Anyone who has received evidence-based healthcare is the beneficiary of the knowledge gained through clinical research, and only by promoting a culture that recognizes its importance within healthcare delivery systems will it achieve its full potential []. Despite its social value, only about 5% of American adults have ever participated in a clinical trial and significant sociodemographic disparities exist, with participants more likely to be older, female, non-Hispanic White, and more educated []. When patient diversity in clinical trials is limited, results may not be generalizable, hindering equitable and effective research translation to the broader community. Specifically, research participation among underrepresented racial and ethnic groups (UREG) is significantly lower than non-minority populations; for example, African American patients were underrepresented in NCI sponsored cancer clinical trials from 2000 to 2002 []. Unfortunately, these underrepresented individuals are typically part of high-risk communities that face the greatest health challenges but benefit the least from research discoveries, further exacerbating existing health disparities. Clark et al. identified five barriers to research participation among UREG, including mistrust, lack of comfort with the clinical trial process, lack of information about clinical trials, time and resource constraints associated with participation, and lack of clinical trial awareness []. A qualitative study that assessed barriers and facilitators for reaching UREG populations in clinical research found that mistrust was an overarching theme across the Social Ecological Model including individual, interpersonal, community and systemic level factors [, ]. Mistrust of clinical research, especially among the African American community, stems from a long-standing history of institutionalized racism in American medicine and oftentimes continues and is further worsened by ongoing discrimination []. However, barriers associated with a lack of information or awareness must also be considered. Remarkably, many individuals have never been approached to participate in research or have been recruited through culturally or linguistically insensitive approaches that inhibit fully informed decision-making. Only 9% of all Americans have ever been invited to participate in a clinical trial, of which less than half went on to participate []. Even within this small population, certain demographic and clinical characteristics – being a non-Hispanic Black person, having a college education, being single, urban-dwelling, or having at least one medical condition – increased the likelihood of clinical trial ; however, non-Hispanic Black persons had lower odds of in clinical trials as compared to non-Hispanic Whites [].