Our search methods identified 3935 unique references for review (Fig. 1). The majority (68%) of abstracts were excluded for not being related to health care access. Following abstract review, we retrieved 171 articles for full-text review. We identified 10 articles investigating barriers to health care access for people with disabilities who are also members of underserved racial/ethnic groups.37–42,44–47 The articles are described in Table 2.
Description of Included Studies
Purpose of Included Studies
Only one of the studies was framed by its authors as: (1) an examination of health care access barriers; (2) for individuals with disability; and (3) from an underserved racial/ethnic group.40 The study examined barriers to receipt of service for Puerto Rican adults with intellectual disabilities living in Massachusetts, as reported by their mothers. Barriers were studied for services with highest proportion of study participants reporting unmet need: occupational therapy (39.4% unmet need), physical therapy (25.8% unmet need), and several non–health care services (not discussed here, as they are beyond the scope of this review). Barriers to care included not knowing how to access services, being wait-listed for services (occupational therapy only), having access problems (ie, service too expensive, inconvenient, not available locally, or no transportation), service being denied or cut, and language barriers or lack of cultural understanding (physical therapy only).
Although the other 9 studies also provided data on barriers to health care access at the intersection of race and disability, their purposes varied (Table 2). Seven of the studies discussed samples with disabling conditions but did not frame their focus on disability38,41,42,44–47; one of these studies45 also did not have examination of barriers to health care as a primary purpose. One study focused on a sample of people with disabilities defined in terms of low socioeconomic status rather than belonging to underserved racial/ethnic groups.39 One study considered the intersection of disability with Latino ethnicity, but its purpose was to evaluate a managed care model rather than specifically study barriers to health care access.37
The 10 articles included a limited array of disability types, racial/ethnic groups, and health care settings. No article reported a mixed disability sample consisting of people with varied disability types, and no article made comparisons between barriers to health care access for people with and without disabilities. The only underserved racial/ethnic groups in the studies were African Americans and Latinos. Multiple types of health care were represented across studies, including ophthalmology care, rehabilitation services, physical and occupational therapies, epilepsy surgery, headache care, primary care, and general access to health care.
Barriers to Health Care Access
The barriers and facilitators to health care access observed in individual studies are presented in Table 3, along with factors that were examined but not significant barriers to accessing care. The most frequently described barriers were: uninsurance (5 studies)38,41,44,45,47; insurance type (4 studies)39,41,45,47; language (3 studies—2 that specified Spanish language as the barrier37,38 and 1 that specified “language or cultural problems”)40; low education level (3 studies)38,44,47; and no usual source of care (3 studies).38,44,47 No single factor was consistently observed to facilitate access across multiple studies.
Factors Related to Race/Ethnicity
Eight of the 10 studies examined factors related to race/ethnicity, and 6 of them observed at least 1 such factor to be a significant barrier to health care access. In addition to language (3 studies),37,38,40 barriers were: patient mistrust of the medical establishment by African Americans (2 studies)42,46; low acculturation (1 study)47; and problems with physician-patient communication (1 study).42 One study observed that lack of both age and racial concordance with others in a medical support group caused discomfort and decreased the relevance of the activity.46
Only one of the 10 studies examined disability-specific factors in relationship to access to health care. The study found inaccessible and unreliable transportation to be a barrier to African Americans with mobility impairments.39
Many socioeconomic and systems barriers were observed within studies that could be due to membership in racial/ethnic groups, disability, or a combination of both. Nine of the 10 studies examined at least one of these factors.37–41,44–47 In all 9 cases, at least one of these factors was found to be a barrier to health care access. Examples of these factors include uninsurance or insurance type (most frequently found, in 5 studies38,41,44,45,47 and 4 studies,39,41,45,47 respectively), low income and education, no usual source of care, lack of clinician or staff knowledge of specialty treatment, poor service coordination, wait time, services being denied or cut, and services considered to be unacceptable.
Figure 2 lists all barriers and facilitators observed across the 10 studies, and whether they were related to race or ethnicity, disability, or other phenomena.
Research examining barriers to health care among people with disabilities who are members of underserved racial/ethnic groups is at an early stage of development. Only 10 published studies that met our inclusion criteria provided data on barriers to health care access among individuals who are members of both groups. Further, the purpose of only one of these studies was to explicitly examine barriers to health care access for people at the intersection, and it focused specifically on adults of Puerto Rican descent with intellectual disabilities. The scope of the 10 included studies is limited. The study populations included only African American and Latino underserved racial/ethnic groups, and the only non-English language group was Spanish speakers. Underserved racial/ethnic groups such as Asian and Pacific Islanders, American Indians, Alaska Natives, or other ethnic groups were not included. Disability types were more varied, but not necessarily representative of the disability population. Some conditions (eg, headache) were included in this scoping review because they were described as limiting function, even though they are often not included in disability definitions. Other included disabilities (eg, vision impairment due to cataracts) would not have been present if the study sample had been able to obtain the needed health care. In addition, a narrow set of health care types was addressed. Access to primary care was underrepresented, with only 1 study focused on access to primary care and 1 focused on general access to care. With such paucity of evidence, it would be difficult to draw generalizable conclusions from the body of literature about barriers and their impact on individuals with disabilities who are also members of underserved racial/ethnic groups.
Quality of included studies also varied. We determined that formal critique is only appropriate in light of the specific purpose for which an article was written. Because included studies generally varied from the purpose of our review (Table 2), a formal quality critique was not undertaken. Given their different purposes, included studies varied across sample size, study design, and measurement techniques. As a general observation, we believe that many of the included studies were of low to moderate quality, even relative to their purposes. For example, several of the studies were qualitative or had very small samples, reflecting a more exploratory phase of research. Although other studies had large overall sample sizes, analyses regarding specific racial/ethnic groups were often conducted with small subsamples. We urge caution in interpreting the results of any given study included in this review.
The barriers examined in the identified studies are a subset of those we anticipated based on the separate bodies of literature on barriers experienced by underserved racial/ethnic groups and by people with disabilities. The majority of the barriers were (1) factors unique to racial/ethnic group membership, such as language barriers and lack of cultural understanding on the part of health care providers; or (2) socioeconomic, health care system, and individual cognitive barriers, which could be related to race/ethnicity, disability, or both. The only barrier specific to the disability experience observed in this review was lack of physically accessible transportation. Other barriers related to disability, such as lack of physically accessible facilities or lack of clinician knowledge related to disability, were expected but not observed. More research is needed to determine whether people who both have a disability and are members of an underserved racial/ethnic group experience these barriers to a greater extent than those in either group alone.
Methodological limitations of the review process may have constrained the scope of our findings. For example, only the literature published in peer-reviewed journals was searched. Further, while we made efforts to perform a comprehensive search, all reviews are limited by the chosen search strategy. Therefore, applicable literature may be available that was not included in this review. Further, the current review only included studies of adults aged 18–64. Examining barriers experienced by children and elderly is an important area for future research.
Our findings reflect a critical gap in the literature. This gap can be considered from 2 directions. Research on health care barriers related to race and ethnicity typically has not taken into account the fact that some members of underserved racial/ethnic groups also have disabilities that may further impact access to health care. Within the public health field, disability has historically been considered a negative health outcome rather than a population with ongoing health care needs.48 Thus, researchers focusing on ethnic-specific or racial-specific population groups may have limited familiarity with the concept of people with disabilities as another marginalized group. Conversely, the literature on disability-related barriers has largely ignored the racial/ethnic diversity within the disability population and the additional role that race and ethnicity play in obtaining appropriate health care. In this case, the lack of attention to overlapping group memberships may be due in part to the relative newness of the field of disability and health. The extant research is at a developmental phase where work is focused primarily on simply establishing the existence of disparities between people with disabilities and people without disabilities. However, our view is that those overall disparities vary considerably in relation to such factors as race, ethnicity, language, and socioeconomic status. Some studies of access barriers have examined disability and race/ethnicity separately or in parallel, but the interaction between the 2 factors are not explored in terms of barriers to care.49 Therefore, attention is needed to subgroup differences within the population of people with disabilities.
Although it could not be determined from this review, we suspect that membership in multiple marginalized groups results in even greater barriers to health care access than are experienced by either group alone. Although disability status may increase access to health insurance for some, it can introduce other challenges related to factors such as physical access barriers and ableism (discrimination against disability). In short, the interaction of disability with race/ethnicity may result in a complex combination of health care barriers and facilitators, about which very little is currently known. New research on the intersection of race, ethnicity, and disability will need to take into account the issues involved in each component of this intersection, as well as the ways in which the components may interact. For example, how are experiences of racism compounded by ableism within the health care setting? What are the unique communication barriers for individuals for whom English is not their primary language who also are deaf or hard of hearing? What biases (conscious or unconscious) about disability are held by health care providers, and what is the impact when they intersect with biases about race/ethnicity for the same patient population? These and many other questions remain to be explored.
As a whole, the health care literature has not adequately considered the impact of people who have multiple cultural identities (ie, race, ethnicity, disability). To understand these phenomena in greater depth, further studies are needed that have the specific purpose of examining race, ethnicity, language, culture, and disability barriers among people at the intersection.
The authors would like to acknowledge many contributors to this study, including research staff support from Martha Bose, Colleen Kidney, Sabrina Kosok, and Amy Sharer; literature review support from Delores Judkins, MLS; and consultation by David Buckley, MD, MPH; Fabricio Balcazar, PhD; Pamala Trivedi, PhD; Royal Walker, Jr, JD; and members of the Project Intersect Advisory Council. Contributions to the methodology were also made by members of the Expert Panel on Health and Health Care Disparities among Individuals with Disabilities: Elena M. Andresen, PhD, Oregon Health & Science University; Charles E. Drum, MPA, JD, PhD, University of New Hampshire; Glenn T. Fujiura, PhD, University of Illinois at Chicago; Lisa Iezzoni, MD, MSc, Massachusetts General Hospital and Harvard Medical School; and Gloria L. Krahn, PhD, MPH, Centers for Disease Control and Prevention.
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scoping review; disparities; disability; health care access; race; ethnicity
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