Primary Health Care Access for People with Disabilities: What’s Working and Not Working Now?
Rie Suzuki, PhD*, Gloria L. Krahn, PhD, MPH, Linda Ivy, and Susan Wingenfeld
Health disparities between people with disabilities and the general population are evident in access to health care and health related services. However, few literature reviews have summarized the barriers and facilitators of primary health care access for this population. Primary health care refers to the initial and sometimes continuing care of varied medical conditions typically provided by a family physician, internal medicine physician, or nurse practitioner; primary care does not include emergency care or care provided by specialists.
The purpose of this systematic literature review is to identify the barriers that impede and facilitators that promote the use of primary health care by US adults with disabilities.
We used systematic methods of literature identification, selection of relevant articles, data extraction, and summary of results to review articles relating to the barriers and strategies on access to primary health care by persons with disabilities.
Process of Selecting Articles to Review
Three methods were used to identify potentially relevant articles as shown in Figure 1. First, we searched three online data bases, MEDLINE, PsycINFO, and Cumulative Index to Nursing & Allied Health Literature (CINAHL). The key terms and text words to search for were determined by the researchers and a trained medical librarian. The review was limited to articles found for the key words and text words: Disability + Outcome + Barriers + Facilitators . In addition to electronic searching, we reviewed reference lists from the 31 included articles (a process called branching), which generated 4 additional included articles. We also scanned and reviewed the Tables of Contents of Social Science & Medicine, American Journal of Medical Quality, and Managed Care Quarterly from January, 1999 to February, 2007 because these three journals had published a majority of the original 31 included articles.
Figure 1: Identification of Potential Articles
The articles were condensed by deleting articles where English was not the primary language; published before 1998; study not done in the US; not in peer reviewed journal; less than 50% of study population was in 19-65 year range; no data analysis;, not focused primarily on physical and/or cognitive disabilities;, mental illness; Alzheimer's disease; or dementia as primary condition; no primary health care; including rehabilitation; drug and alcohol treatment; exclusively health education program; and no barriers or facilitators addressed in the article. Two reviewers read all article abstracts for eligibility, and then the full papers of the abstracts that were retained for inclusion.
Process of Reviewing Selected Articles
All articles were evaluated based on the exclusion criteria. All included articles were extracted.
The researchers developed a form to record article characteristics and extract the relevant information to address the key questions. Two reviewers extracted information from the included articles. Information regarding demography, study setting, research design, the possible barriers and facilitators of primary health care access was extracted.
A total of 4478 potential articles were screened for inclusion at the abstract review and 289 at the full paper review. Thirty-five studies met original criteria and their information was extracted. Of them, about 50% were cross-sectional survey studies, about 40% were qualitative and 10% mixed method studies. The majority of survey studies had more than 1000 participants, and the qualitative studies had fewer than 50 participants. About 70% of articles targeted both genders.
Most frequently cited barriers included the individual’s knowledge, clinician’s knowledge and attitudes toward patients, system level barriers, lack of accommodation within facilities, lack of care coordination, inadequate time during an appointment, and health care insurance (see Table1). Based on anecdotal reports, we anticipated that unemployment and having a service animal might be barriers to using primary care, but did not find them in the included articles (Table 2). We did find, however, that having mental and chronic conditions, being old, being from a minority group, having less education and being a woman were reported as negatively affected access to primary care (Table 3). Few facilitators to accessing primary health care were identified (Table 4 and 5).
Table 1: Obstacles to receiving primary care for persons with disabilities
|Clinician does not have the knowledge, ability and skills to care for people with disabilities||19|
|System level barriers (e.g., inconvenience, scheduling of services, inaccessibility)||18|
|Insurance/Medicaid/Medicare does not cover the services||17|
|Clinician focuses on disability or chronic conditions, not general health||17|
|Health care facilities do not provide enough access and accommodation||14|
|Not enough care coordination/no referral||14|
|Lack of transportation||13|
|People with disabilities do not have enough knowledge, attitudes and skills about how to get primary health care||12|
|Cannot afford the care or the co-payment||10|
|Do not have social/family/caregiver support||10|
|Inadequate time during an appointment||6|
|Lack of sign language||1|
Table 2: Anticipated to be obstacle but were not observed
Table 3: Demographic characteristics as obstacles to accessing primary care
|Mental conditions interfere getting to the doctor’s office||6|
|Health conditions interfere getting to the doctor’s office||5|
|Aging—older persons have harder time getting to primary care||3|
|Being a woman||1|
Table 4: Facilitators to receiving primary care
Table 5: Anticipated facilitators that were not mentioned
|Internet / E-mail access||0|
Knowledge of clinicians and individuals with disabilities, particularly around preventive services and primary health care, appear to be important factors for increased access to primary health care. To improve health outcomes, practitioners may need to focus not only on condition management but also on primary health care in persons with disabilities. Improved access to health care would include more comprehensive health insurance coverage, improved care coordination, and improved provider knowledge and attitude toward persons with disabilities. The findings clearly highlight the need to develop intervention programs to increase primary health care access for persons with disabilities.