Appropriate and timely health care is essential to optimal health outcomes.1 Reduced access to health care disproportionately affects members of marginalized groups, including underserved racial/ethnic groups2 and people with disabilities.3 Research about each of these 2 distinct populations documents common as well as unique barriers to accessing health care. However, it is not clear whether having dual membership in both groups increases health care access barriers and, ultimately, health disparities in this unique population.
People of all racial/ethnic groups experience disability. According to Behavioral Risk Factor Surveillance System data from 2004 to 2006, an estimated 19.9% of the total adult US population had a disability. By racial/ethnic category, 11.6% of Asian, 16.6% of Hawaiian/Pacific Islander, 16.9% of Hispanic, 20.3% of non-Hispanic white, 21.2% of non-Hispanic black, and 29.9% of Native American respondents experience disability.4 Furthermore, members of underserved racial/ethnic groups disproportionately experience risk factors for disability that may be exacerbated by poor health care access.5–7 Understanding how health care access may change for these individuals once they have a disability is particularly important, as such knowledge can inform efforts to prevent further deterioration of health and function.
The purpose of this scoping review is to identify published literature on barriers to health care access among people with disabilities who are also members of underserved racial/ethnic groups. Healthy People 2020 describes that access to health care requires 3 steps3,8: gaining entry to the health care system; accessing a location where needed services are provided; and finding a provider with whom the patient can communicate and trust. Completing these steps requires cultural and linguistically competent care that aligns with the patients’ cultural contexts. Barriers in all of these categories affect people with disabilities and members of underserved racial/ethnic groups. The following is a brief discussion of literature about barriers experienced by these 2 groups separately, which informs the expected outcomes of a review of barriers at the intersection.
UNDERSERVED RACIAL/ETHNIC GROUPS
People in underserved racial/ethnic groups are less likely to have a usual source of care.9 They also experience numerous logistical barriers, including inconvenient office hours conflicting with work schedules; lack of appointment availability and lengthy waiting lists; lack of transportation10–12; unaffordable health care costs; and inadequate health insurance coverage.2,11,13,14 Access is further restricted for individuals who do not have permanent legal resident status.15,16
Even after gaining access, members of underserved racial/ethnic groups continue to experience barriers, including language barriers and difficulty obtaining quality interpreter services,2,11,12,17 lack of health care provider cultural competence,10,18 and conscious and unconscious biases, stereotyping, and discrimination.2,10,11,19 In addition, members of underserved racial/ethnic groups may have difficulty trusting physicians and health care systems due to a history of unethical treatment and institutionalized racism.2,20,21 Access is limited by gaps between the institutional culture of the health care setting and the culture of the patients, poor physician-patient communication, and lack of cultural brokers, system navigators, and cultural acceptability of the care offered.2,12,22,23
In addition, patient characteristics may impact health care access. Such factors include: culturally defined beliefs about health, illness, and wellness; world view about western medicine; knowledge necessary to navigate health care systems; literacy and health literacy; and socioeconomic status.17,24,25
PEOPLE WITH DISABILITIES
A smaller, more recent literature has explored health care barriers experienced by people with disabilities. Many of these parallel the barriers experienced by underserved racial/ethnic groups, including: limited appointment availability and inconvenient office hours26; lack of accessible and timely transportation26,27; substantial cost and insurance barriers14,26–28; poor physician-patient communication and difficulty navigating the health care system27,29; discrimination, negative attitudes, and lack of respect.27,30–32 Like members of underserved racial/ethnic groups who encounter barriers locating providers who offer culturally appropriate and linguistically accessible care, people with disabilities often have difficulty finding providers with relevant specialized knowledge for treating disability-related conditions or other health problems in the context of disability.26,27,30 In addition, individuals who are deaf or hard of hearing encounter linguistic barriers and lack of interpreters.31,32 Unique to people with disabilities are architectural barriers associated with physical access to and navigation in health care facilities.24,25,28 Moreover, they may receive insufficient time for addressing complex medical needs during health care visits.27
Understanding barriers to health care access experienced by people with disabilities in underserved racial/ethnic groups is key to developing successful interventions to improve health care access and outcomes for this marginalized group. Although barriers to health care have been studied separately for people with disabilities and for underserved racial/ethnic groups, there has been much less attention to those who are members of both populations. The purpose of this scoping review is to identify barriers that have been described for this group, and to note gaps where potential barriers have not been addressed in the literature.
We conducted a scoping review based upon published guidelines.33 The key question guiding the review was: what peer-reviewed, English-language studies presenting original data examine barriers to health care access and utilization among people with disabilities from underserved racial/ethnic groups? The review included articles published between 2000 and June 19, 2013.
Conceptual and operational definitions were set for concepts introduced in the key question, including: health care access/utilization, barriers to/facilitators of health care access/utilization, underserved racial/ethnic group, and disability (Table 1). We used purposely broad definitions for inclusion (eg, health care access) because of the exploratory nature of this review.
The International Classification of Functioning, Disability, and Health (ICF)34 model of disability, which includes impairments, activity limitations, and participation restrictions, was the conceptual definition for disability. The search strategy used subject headings consistent with these limitations, rather than terms for specific disabling conditions. Details of this search strategy are reported elsewhere.35 Populations with psychiatric/mental health disabilities (without additional cooccurring disabilities) were not included in our disability definition. We acknowledge that literature about these individuals is important, but we believe this population is sufficiently unique and complex that it should be given full consideration in a separate study.
We developed and executed search strategies for MEDLINE, PsycINFO, and CINAHL. The disability search strategy, described above, was combined with a search for underserved racial/ethnic groups, based upon a published search strategy on health disparities.36 Because we were not limiting the search to particular types of health care services or barriers, the search strategy was not combined with an additional search for health care or barrier subject headings in MEDLINE or CINAHL. Rather, all abstracts returned by the combined racial/ethnic group and disability searches were screened. As PsycINFO is not a health-specific database, the search strategy was further combined with subject headings to specify health care access [eg, health care services, health care utilization, uninsured (health insurance)]. See Appendix 1 (Supplemental Digital Content 1, http://links.lww.com/MLR/A772) for the complete search history. We retrieved additional titles for review via table of contents reviews for years 2000–2013 of Disability & Health Journal, Journal of Disability Policy Studies, Ethnicity and Disease, and Journal of Health Care for the Poor and Underserved. These journals were selected because the 4–2 with a disability focus and 2 with a focus on underserved racial/ethnic groups—publish on health disparity issues. Finally, we reviewed reference lists of included articles for potentially relevant titles.
Basic inclusion criteria were: English-language peer-reviewed journal publications from years 2000–2013; about adults aged 18–64 in an underserved racial/ethnic group who also have a disability and reside in the United States or US territories; and examining barriers to health care access. The working-age population was specified because barriers, including insurance barriers, can vary substantially across age groups. Studies that defined disability as an outcome, rather than the population of interest, were excluded. Included articles could describe observational or intervention research and were not limited by study design.
At the abstract level of review, 2 independent reviewers were each assigned 45% of the total number of articles with 10% overlap to monitor interrater reliability. The full texts of all articles included at the abstract level were reviewed independently for inclusion by 2 reviewers, with all discrepant decisions about inclusion resolved by consensus. For quality-control purposes, author reviewed articles included by the 2 independent reviewers.
Two reviewers independently extracted study descriptive data and potential barriers to (or facilitators of) health care access, resolving extraction discrepancies by consensus. Potential barriers/facilitators could include characteristics of the person (eg, age, sex, country of birth) or external factors (eg, insurance type, usual source of care, transportation). Although a number of these factors are nonmutable, they are referred to as barriers, facilitators, or nonsignificant factors for simplicity. Race, ethnicity, or presence of a disability were not considered as barriers in and of themselves; rather, we wanted to know what barriers are encountered by people with disabilities who are members of underserved racial/ethnic groups.
Extracted data are summarized in 2 tables (Tables 2 and 3). Descriptions of the included studies, the purposes of these studies, and barrier and facilitator findings are presented. To contextualize the findings, we examined whether these factors were related to race/ethnicity, disability, or other phenomena (eg, socioeconomics or systems). Certain barriers could be attributed to multiple factors (eg, physician-patient communication, unreliable transportation). We used the contexts provided by the author of an included study to assign each barrier to its respective category.
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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