Abstract
Objectives:
A study exploring facility-related barriers to healthcare participation (the level to which an individual is engaged or involved in their own healthcare activities from simply keeping appointments to following treatment regimens) in persons with disabilities in Appalachia from the perspectives of four stakeholder groups, (1) adults with disabilities, (2) caregivers of persons with disabilities, (3) advocates for persons with disabilities, and (4) providers who treat persons with disabilities.
Background:
Persons with disabilities potentially face additional barriers to healthcare participation than those without disabilities. Understanding and addressing the barriers to participation could assist in improving healthcare outcomes among the disabled population.
Methods:
A qualitative study was conducted involving scripted focus groups with four stakeholder groups with expertise/experience in disabilities. The objective was to assess perceptions of impacts of clinical design elements on healthcare participation.
Results:
Participants identified and characterized six major categories of facility- and nonfacility-related barriers they felt impacted healthcare participation, with priority differences reported between each group.
Conclusions:
The healthcare facility is perhaps the most visible tool the provider has at his or her disposal to deliver effective healthcare. Understanding the interactions persons with different disabilities have with the physical facility and the messages, both intentional and unintentional, the state of the facility sends can provide useful insights into delivering more effective healthcare to this population.
Keywords
The aim of this study was to identify barriers to healthcare access for individuals with disabilities in Appalachia—an area in which nearly 40% of the population (double that of the rest of the United States) lives in a rural setting. The Americans with Disabilities Act (ADA) of 1990 (Pub. L. No. 101-336, 104 Stat. 328) defines “disability” as a physical or mental impairment that substantially limits one or more major life activities. A major life activity for many persons is accessing healthcare (U.S. Department of Justice, Civil Rights Division, 2009). The Institute of Medicine defined access as “the timely use of personal health services to achieve the best possible health outcomes” (Millman, 1993, p. 32).
According to the U.S. Census, approximately 56.7 million people had some type of disability in 2010, which breaks down to 19% of the total population or 1 in 5 people in the United States (U.S. Census Bureau, Public Information Office, 2016). Of this group, 8.8 million live in the rural setting. Persons living in rural America, such as Appalachia, often face multiple barriers to accessing healthcare (Healthcare Access in Rural Communities, 2016). Poor healthcare outcomes in rural areas are attributed to a combination of factors such as having less healthcare options, lower health literacy, engaging in higher risk health behaviors such as smoking and excess alcohol consumption, having less financial means to access healthcare, and higher accident rates.
Understanding the different barriers for various disability groups can facilitate better healthcare access for all patients. Kroll, Jones, Kehn, and Neri (2006) studied what barriers adults with physical disabilities faced when accessing primary healthcare. These researchers reported that the most common reported barriers were either structural–environmental barriers relating to the physical, social, and economical environment or process barriers relating to service provider–patient interactions. Similarly, a secondary analysis of the Behavioral Risk Factor Surveillance System Study was completed, and a variety of barriers (i.e., financial, perceptual, and physical) were reported to make healthcare participation difficult for persons with disabilities (Pharr & Bungum, 2012). Mudrick and Schwartz (2010) studied healthcare disparities and access for persons with disabilities and determined that some of the disparities qualify as discrimination under the ADA. There is evidence to support the recognition of the population of persons with disabilities as a distinct health disparity group, basing their recommendation in part on the challenges this group faces when trying to access healthcare (Krahn, Klein Walker, & Correa-De-Araujo, 2015). Understanding perceptions of barriers from healthcare providers is also an important perspective to gain to improve healthcare access for all (Brems, Johnson, Warner, & Weiss Roberts, 2006). Researchers recommended that more studies are needed to fully understand the causes of inaccessibility for healthcare services (Kroll, Jones, Kehn, & Neri, 2006; Pharr & Bungum, 2012).
The design of medical building spaces to be both flexible and adaptable is a strategy for meeting diverse care needs of patients (Vickery, Nyberg, & Whiteaker, 2015). Flexibility is typically used to address short-term changes in space needs, while adaptability typically reflects a longer term change in space needs. Both flexibility and adaptability are concepts of equity in healthcare as discussed by Reiling, Hughes, and Murphy (2008).
Method
Design
A grounded theory approach was used during the focus groups to gather data. Focus groups are valuable to use to gain perspectives from participants, which cannot be obtained via other methodologies (Long et al., 2012; Morgan, 1997). The goal of the focus groups was to gain perspectives on healthcare barriers in various healthcare settings in Appalachia. Each focus group was limited to 12 participants to allow ample discussion to occur during the meetings. This study was approved by the university’s institutional review board and funded by the university’s Interprofessional Education Office’s Community-based Care grants.
The authors moderated each of the four focus group sessions. All sessions were audio recorded on a digital voice recorder and transcribed verbatim for theme analysis. Two occupational therapy students assisted with note-taking on the whiteboard during the focus groups and also aided participants who required support for documenting, reading, or expressing their thoughts. The moderators followed a script that included open-ended, situational, rankings, and yes/no questions on healthcare participation at the community and facility level. If participants were uncomfortable speaking out, they were encouraged to write their thoughts on a form that had the scripted questions listed (participant notes).
At the start of the focus groups, all participants signed a consent to participate, provided demographic information, and completed a frequency of usage checklist for healthcare facilities and/or services they use throughout a typical year, which was created by the researchers. The moderators then led a group discussion on healthcare and environmental barriers at the community level to assist participants’ understanding of the way “barriers to participation” was being used. Once the moderators were comfortable that participants were themselves comfortable with the research study language, they led participants through a virtual walk-through using guided visual imagery of a generic healthcare facility as described in Haddox (2017). For the purposes of these groups, the facility was described to include parking lots, drop-off zones, waiting/reception area, hallways, restrooms, exam rooms, lab rooms, procedure rooms, and any other area with which the participant might reasonably utilize. Participants discussed the barriers to healthcare participation (for either themselves or the person they were representing), as the moderators encouraged the participants to think of places and services they most frequent (see Figure 1).
Counts of what types of healthcare facilities or specialized services all focus group participants (n = 31) utilized in a year.
Setting for the Research
The university’s Center for Excellence in Disabilities (CED) was the meeting site for the first three focus groups: board members, caregivers, and adults with disabilities. This site was selected as it was familiar to most of participants, was accessible, and was assumed to be a safe place where participants could talk freely about their healthcare. The provider focus group was held in a room at the university’s health sciences center as it was a convenient meeting place for the providers.
Participants
The participants were selected via convenience sampling. All participants were recruited through e-mails from the university’s CED and online advertising through the university system. Focus group sessions were completed with four different groups of individuals who were stakeholders in the dialogue of improving healthcare delivery for persons with disabilities. The four groups were as follows: (1) advisory board members of the CED, (2) adults with disabilities, (3) caregivers of children (young and adult) with disabilities, and (4) healthcare providers who treat people with disabilities. Please refer to Table 1 for demographics of each cohort. All participants received a US$50 gift card.
Demographics of Participants.
Note. The diagnosis listings refer to whom the focus group participants were reporting on; this could be themselves or another which they care for. CED = Center for Excellence in Disabilities; M = male; F = female.
Data Analysis
The transcripts, participant notes, and photos of the whiteboard notes were coded separately by the two authors to identify common themes relating to environmental barriers to healthcare participation. To complete the coding, segments of information or phrases were coded as described and supported by Kvale and Brinkmann (2009). The researchers completed content analysis to determine trends across participants and focus groups to mark significance of findings and identify areas of importance related to healthcare participation barriers (Mayring, 2000). Main (global) themes were established initially to identify the overarching barriers to participation. Then the data were coded into smaller categories to determine specific barriers in the environment. Frequency analysis was performed using Microsoft Excel.
After each focus group, the researchers completed memoing for coding, data analysis, trends, and methodological insight. Birks, Chapman, and Francis (2008) discussed the idea of memoing as an effective way to ensure preservation of information, so that the researcher could recall perspectives from the qualitative experience to enhance the research data and process. Also, after the authors’ themes were established, member checks were completed by mailing a short Likert-style questionnaire to all focus group participants to determine whether the researchers’ coding was accurate in capturing the focus group topics. Sixteen of the 31 member checks were returned. Findings from the transcripts, participant notes, whiteboard notes, memos, and member check questionnaires were triangulated to determine the environmental limitations for successful healthcare participation.
Results
Overarching themes were uncovered by group for what barriers existed in healthcare participation (see Figure 2). In their own words, each participant ranked the barriers to healthcare participation from 1 to 5; these were coded into six themes (i.e., financial, support system, provider awareness and education, accessibility, availability of services, and transportation) and analyzed. Provider awareness and education was identified most frequently as a barrier for all groups (46), followed by accessibility of the facility (40), transportation and distance to and from healthcare sites (25), availability of services (24), financial limitations such as insurance, co-payments (7), and support system such as family or caregiver (3). The providers group ranked accessibility of healthcare sites as the number one barrier to healthcare participation, closely followed by provider awareness and education. The caregivers of children with needs identified provider awareness and education as the number one barrier, with accessibility and availability of services following. The adults with disabilities ranked transportation as the number one barrier to their healthcare participation. Accessibility and provider awareness were ranked as their second and third most frequent barriers. Lastly, the advisory board members ranked transportation, availability of services, accessibility, and provider awareness and education all as the number one barrier for their clients’ healthcare participation.
The number of mentions for each global thematic result when participants were asked to identify the primary barriers to healthcare participation in Appalachia.
During the virtual walk-through of a generic healthcare facility, the focus group participants identified specific environmental barriers to their participation in their healthcare. This information was coded into 15 themes (i.e., seating options; wayfinding; sensory tolerance such as lighting, noise, and temperature; confidentiality adherence; furniture, equipment, or clutter blocking mobility paths; ADA accessibility; appearance of the facility; cleanliness; smells; safety; infection control or germ presence; privacy; communication between patient and service providers or portrayal of care; adaptive equipment and patient education for specialized techniques; and the parking lot) and analyzed within and between groups to better understand these limitations (see Figure 3). The CED advisory board group identified ADA accessibility as the most frequent physical environment issue that hinders their clients’ participation in their healthcare, followed by adaptive equipment and patient education, then communication. Caregivers of children with needs identified their main environmental concerns that hindered optimal participation in their child’s healthcare as sensory concerns in the environment and accessibility. Adults with disabilities marked accessibility as their primary concerns, followed by sensory issues, seating options, and adaptive equipment and education. Lastly, providers’ primary concerns were confidentiality, accessibility, sensory, travel paths, and cleanliness.
Thematic analysis of virtual healthcare environment walk-through for barriers to healthcare participation (depicted by the bars) by group (x-axis).
Focus group participants were asked to describe how their perceived healthcare participation would improve in an optimal healthcare environment (see Figure 4). The CED advisory board reported that their clients would experience improved physical health, improved mental health, and be able to follow through with doctor recommendations or alternative treatment recommendations. The caregivers of children with disabilities markedly identified these optimal conditions would enable them to follow recommendations and treatment protocols. The adults with disabilities and providers groups both identified following doctor recommendations and improved physical health as expected health outcomes in an optimal healthcare setting.
Group participants identified how healthcare participation would improve with optimal healthcare environments.
Discussion
One of the most significant barriers to participation in healthcare mentioned by all four cohorts was provider awareness and education (see Figure 5 for examples of each barrier global theme). Curiously, this exemplifies that it is not always a physical barrier that inhibits participation in daily life activities. Healthcare facilities need to consider focusing on the whole person when creating spaces for services and not just the state and federal guidelines for accessibility (i.e., ADA). Adult Participant 2 stated, “They’re complying with the minimum requirements under the law, instead of looking at the usability of all patients.” Training healthcare workers to have empathy, creating spaces with considerations for all levels of abilities including mental health and sensory limitations, and giving options to healthcare consumers can enable greater independent participation in their care. Adult Participant 5 stated,
The six global themes and examples of comments from participants.
I have found that when I went into the waiting room, I was stuck in a corner…but I should be able to pick where I want to sit. I don’t want to sit in a corner watching CNN or whatever, you know, or not watching CNN, with my backed turned to it or something. But there’s so many times where I was stuck in a corner and they would call my name, they’d be looking around and I’d be like I’m over here. And then I’d have to fight to where I needed to be. This concern seems like a physical barrier, but it is more than that. There is an emotional and social component to this barrier which can impact participation thereafter.
Another example of provider awareness and education impacting healthcare participation is for parents of children with autism. Caregiver Participant 4 stated, Well you’re putting a four-year-old, and I’ll just use autism as an example. But you’re putting a four-year-old child with autism in a closed room with no toys, with nothing to do, and they’re expected to sit there and wait for the doctor who might be running an hour late. And it’s…getting into the computer and checking out the instruments in the room. And it’s really hard for the family because they notice everything. We’re not just talking physical though, right? For example, time and approach is a big issue in the rural places. Meaning, someone that has significant behavioral issues or PTSD, ADHD, you know, is having some time accommodations. They’re not going to sit there for a half hour to an hour to see the doctor. And then also, the approach of the physicians, or healthcare professionals that they’re talking to or working with the disability, giving them time to process. They might have CP or they might have TBI.
Analysis of each cohort’s specific environmental concerns showed that each group had a different focus. The patient groups focused on lack of sensitivity by staff, confidentiality, accessibility, and environmental arrangement. Many of these fall under the global theme of provider education and awareness. Supporting healthcare providers with continued education opportunities, such as during staff meetings to reiterate the importance of the whole patient, could improve and bring awareness to the nontraditional aspects of access and participation.
The CED advisory board group identified ADA concerns as their primary environmental barrier. This could be due to their knowledge of advocacy for persons with needs as well as the purpose of the CED, which is to promote advocacy and equality in the community. Some examples of this include lighting concerns (e.g., low light), adaptive equipment being present for assistance (e.g., grab bars), wayfinding (e.g., signage for directions in large facilities), and noise triggers of seizures or anxiety. The board also identified lack of signs and communication barriers from staff and providers seeming to greatly hinder participation. Board Participant 5 stated, Something that I have issues with, and this is just anywhere. I go up to these little windows, and they’re that tall. They’re taller than my [wheel]chair. But then they expect me to speak through these little microphone things, so they can hear me. It doesn’t work. And I’ve got to give them all my private information. And just like the awareness too, like people waiting 12 [to] 24 hours to come in after stroke symptoms and we do so much education in the community to come in as soon as you have any symptoms but like we don’t reach everybody and you definitely see that when they’re coming from further away.
All groups discussed that following doctors’ recommendations would improve if healthcare environments promoted equal participation. Within this idea, patients would have other services available to them as recommended by the provider. Adult Participant 1 stated, My doctor tells me that I need physical therapy because the older I get, the more difficult it is for me to do things. I gain weight and things like that. Which leads to depression and other things. So my doctor tells me get the physical therapy, get out and about into the community, meet people. And it’s difficult. [This state] is so rural. That’s the big barrier is we’ve got people coming from [a town] driving four hours to come to the [name] Center just to get the diagnosis. And then we have to say to them there’s really no help in your area. So then they may be one of those families that drive for two hours to come see an OT [occupational therapist] because there’s no OT in the area. And it’s a huge problem in the state. Yeah, so I’m married, and my husband is my primary source of transportation, but with that being said, he is also disabled. He is 66 years old. He’s an ex-coal miner. He had health issues of his own. So he’s not always, okay, let’s do this. There used to be a bus line that ran to my house. They no longer do that. So therefore because my husband has so much on his plate taking care of me and our 16 year old daughter and the house and everything that accompanies that, it’s very difficult to get anywhere, even to this meeting it was difficult. Well, we got stuck in traffic but he’s older, he didn’t feel well and just things with that. So I can’t go to therapy, okay. I can’t always get out into the community. If it’s winter and I know the place already has a bad sidewalk and a horrible curb and I know, the other things is when they do snow and they don’t clear the curb cuts and things like that, and I know that I’m not going to be able to maybe get it over that. I will change an appointment if I think I can’t walk in without being afraid.…you have to park way up here. Somebody has to take me. Somebody has to, you know, drop me off. I have to use the valet. I cannot independently access services at [facility]. I will not go.
Conclusion
Flexibility and adaptability of space would be the ultimate solution to serving a diverse set of patients. Flexibility (flexible design) means that a space was designed to accommodate differing scales of needs for the original intended use. Adaptability (adaptable design) means a space is designed to be repurposed when the original use has changed or is no longer conducted in that space. While the initial design of a space may not have considered flexibility and adaptability, especially if the space is an older or a facility that was never intended to be a healthcare space (i.e., old school, community building, or a repurposed structure), there can be opportunities to modify these spaces and tools that help providers and administrators understand and identify the opportunities. It is impossible to accommodate all situations at all times, but if healthcare providers, administrators, and builders were cognizant about the varying needs of patients and could offer options as needed, it is reasonable to expect that both care and participation would improve. As with this project, different disability groups remarked different primary barriers to accessing healthcare. Building in the flexibility and adaptability would not only address the physical needs of different patient groups but would also send a strong message to the patient that the healthcare providers understand the various challenges a patient is facing—challenges that may be unrelated to but certainly inform the current visit. Additional benefits to accommodating various patient needs could be improved interaction between the patient and the healthcare staff. A patient who feels that attempts are being made to accommodate their “outlying” situation may be more calm and understanding patient when obstacles are present.
As stated at the beginning of this article, the setting for this research is the Appalachian region. Appalachia is 20% more rural than the rest of the United States. As the state of West Virginia lies fully within the Appalachian region, much of West Virginia, but not all, is rural too. While many of our participants live in areas that could be classified as rural, they often seek healthcare in mix of rural and urban settings—the specialized care often being available only in a medical center complex type of facility. We did not ask them to limit their comments to one particular facility over another, so it is reasonable to envision a wide range of physical conditions depending on the age and original use of the healthcare facilities from which they were basing their experiences. While the provider awareness and education aspects might be expected to vary less from facility to facility, it is also not unreasonable to project that the condition of the facility could be impacting experience here as well.
Limitations
The sample was recruited largely through our community partner organization, the university’s CED, limiting potential participants from outside of this system. It is also reasonable to suspect that others who were interested in participating could not because of the physical location of the study—travel distance and time of day being likely factors. Additionally, the recruitment materials sought those who self-identified as meeting the disability qualifier. We purposely did not define disability as we felt this approach would open the study to a larger potential participant base. Convenience sampling and small sample size limit generalizability of the findings to other situations. Teleconferencing or other means of virtual communication were not considered as viable due to the anticipated detail of the conversation and the lack of reliable broadband access across much of the state in which the study was being conducted.
Recommendations for Future Research
The Outpatient Health Care Usability Profile (OHCUP; Drum, Horner-Johnson, & Walsh, 2012) is designed as a valid, reliable, and user-friendly tool that measures the physical and environmental features of outpatient healthcare facilities. Instead of addressing full compliance with the ADA, the tool measures the essential features of an outpatient healthcare facility. Another tool, the Center for Health Design Community Health Center Facility Evaluation Tool (CHD Tool), is an emerging tool designed to assess facilities in four domains: (1) physical environment, (2) healthy behaviors, (3) socioeconomic factors, and (4) clinical care. As such, the CHD Tool looks at the healthcare facility from a more holistic approach than the OHCUP. These two tools could contribute to a better understanding in the literature of the understanding, prevalence, and severity of facility-related scenarios that may pose barriers to healthcare participation in healthcare settings.
Furthermore, as many of the participants referenced specific diagnoses under the special healthcare needs umbrella, additional study is warranted on barriers related to these diagnoses and associated disorders. Of particular note in this study was the emergence of autism spectrum disorders and the associated challenges of being in an unaccommodating health environment, especially as related to sensory (i.e., auditory/visual) and safety (e.g., children getting out of sight from a parent while checking in or attending to the healthcare appointment details). The barriers to healthcare: Checklist for adults with autism (Raymaker et al., 2016) was created to identify the most common barriers and to identify opportunities for systems-level accommodations, largely based around improving communications between healthcare providers and their patients with autism. The authors of this article are currently engaged in using the checklist to identify which barriers, and in what frequency, occur in the study area with the goal of exploring potential accommodations that are more related to the physical healthcare facility—something the checklist researchers have not considered. Also worth investigating is the reasoning behind some of the identified overlaps in barriers determined by the different stakeholder groups and how these different groups could work together toward common solutions.
Implications for Practice
This study highlights the importance of provider awareness and education, and understanding of the patient’s disability, which may or may not be the primary reason for the patients’ office visit.
Facility administrators should become more attuned to the messages their facilities are sending to patients. One option for doing this is to work with the facility’s patient satisfaction survey provider to ensure that a broad range of detailed information is being gathered to identify and address barriers. It is not uncommon for facility-related questions on such surveys to be very general and not helpful (e.g., cleanliness and orderliness).
Providers, administrators, and builders need to be aware of adaptability and flexibility of space for accommodating a variety of needs. While it may not be possible for a facility to provide for every special needs scenario, it may be possible to improve the physical and emotional environment through the provision of appropriate furniture options (e.g., seating with different heights, arms/no arms, benches/clustering/gaps for wheelchairs to allow patients/caregivers to sit together, and cubbies for storage of personal effects to declutter the seating space). Facilities could also consider alternative audio and visual stimulation during check-in and waiting.
While basic ADA compliance of facilities is a good starting point, the facility should be viewed as the most visible tool the healthcare provider has at their disposal and utmost care, and concern should be given to constantly improving that tool. Facility design does not only impact patient participation but can also impact provider success (i.e., patient outcomes).
Provider awareness and education was a major theme, indicating that there is room for increased compassion and understanding of a person’s disability on the part of the healthcare provider. This may be especially important when the patient’s primary disability is not the reason for the healthcare visit (e.g., autism or traumatic brain injury), and thus the general healthcare staff may not be as well-versed in the challenges associated with that disability.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding received from The Claude Worthington Benedum Foundation, through the West Virginia University Foundation, and from Interprofessional Education Office grants for Community Based Care for US$10,000.