Recognizing Inequity: A Critical Step of Health Literacy for People With Disability

Participant Selection and Recruitment

To recruit participants, we distributed a flyer, approved by the Rush University institutional review board, throughout a large medical center campus. To facilitate recruitment, we also used snowball sampling, asking enrolled participants to distribute the flyer to people they knew (Etikan & Bala, 2017). Twenty-four people contacted the primary researcher (Laura VanPuymbrouck) across a 6-mo period and were screened to determine their eligibility to participate in this study. To better generalize our findings to disability community members who may not be experienced in advocacy (Baldridge & Veiga, 2001), we excluded any person who belonged to a disability advocacy group or who responded “yes” to the following question: “Do you feel you have a strong knowledge of disability rights or the Americans With Disabilities Act?”

Inclusion criteria required that participants be age 18 yr or older and English speakers who identified as a PWPD in need of a mobility aid; they also had to have attended a primary health care visit in the past year. Four men and 6 women met the inclusion criteria. Table 1 outlines participants’ demographic characteristics. All participants provided informed consent before data collection and received $25 for their time and travel. This study was approved by the Rush University institutional review board.

Grounded theory methods are used to describe poorly understood phenomena, examine relationships among data, and provide an opportunity for theory development when none exist (Glaser & Strauss, 2017). The dearth of knowledge on how disability health literacy is learned by PWPDs points to using grounded theory to better understand this process. During data collection and analysis, we used constant comparative methods of grounded theory in iterative cycles (Glaser & Strauss, 2017) to explore PWPDs’ experiences of seeking primary health care services and their perceptions of disparate care (Figure 1).

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Figure 1.

Phases of data analysis.

Reflexivity

The lead author of this article has an established record in qualitative research and functioned as both the principal investigator (PI) and the research advisor to students (the coauthors) as part of their doctorate of occupational therapy curriculum during this project. Throughout the research process, we used critical reflection to uphold the credibility of qualitative results and the emphasis on participants’ lived experience (Creswell & Creswell, 2017). As a team of three students and one faculty member in the field of occupational therapy, we acknowledge that our experiences in this field inform our thought processes and our interpretation of transcripts through coding. From the beginning of the project, we used field notes and audit trails of all decisions dealing with data collection and analysis and then examined them for the existence and influence of bias. In addition, we recognize that we represent nondisabled perspectives, although one team member identifies as having a chronic disease requiring frequent health care visits and potentially shares similar lived experiences with health care access barriers as those experienced by the study participants.

In the formation of our focus group question guide, we piloted questions with people from the disability community and included their recommendations for change. Also, in the process of combining codes into thematic groups, one member of the research team performed this task independently and compared their results with those identified by the other three team members in a group analysis. A different person performed this task for the coding of themes from Focus Groups 1 and 2. These processes increased the rigor of the resulting themes by working to reduce biases that may have been derived from group discussion (Creswell & Creswell, 2017).

Data Collection

Three semistructured focus groups were conducted at a large urban medical campus using a question guide informed by grounded theory methods (Glaser & Strauss, 2017). Researchers used an open-ended question guide consisting of four broad questions to seek information about the participants’ most recent primary care visits. For example, the first question was “Please describe a recent health care experience.” The questions prompted participants to describe their health care visits, how they interacted with the staff and providers, whether they had specific needs or requests, how they felt about the care they received, and how providers responded to requests. The focus group discussions were audio recorded, transcribed verbatim by members of the research team, and deidentified.

The interview location was chosen because it is the PI’s place of employment and is easily accessible by PWPDs. Participants were assigned to a group on the basis of their availability to attend one of the three prescheduled interviews. All focus group interviews were facilitated by the PI, lasted 1 hr, and included 3 to 4 participants.

Data Analysis

All members of the research team coded the transcripts from Focus Groups 1 and 2 using a grounded theory systematic design, including open, axial, and selective phases of coding (Creswell & Creswell, 2017; Figure 1). In the initial phase, we independently completed open coding using descriptive codes to identify phenomena, process codes to identify actions occurring, and in vivo codes to highlight direct comments from participants’ lived experiences.

The second phase of the analysis process included intensive group discussion of code meaning and group consensus to refine codes. We used constant comparison of code meanings in a process of axial coding, inductively working to reveal thematic groups and subgroups for all codes (Saldaña, 2016).

During the third phase of coding, we used a selective coding process to narrow code categories of emergent themes with corresponding subthemes (Creswell & Creswell, 2017), which revealed that participants’ experiences fell along a continuum of evolving stages for recognizing disparate care and strategies to overcome barriers. Final themes were defined by codes aligned to them using consensus agreement among group members. These themes were deductively informed by each team member’s a priori concepts of occupational therapy, health care access barriers of PWPDs, and health literacy.

In the final phase of coding, we then used these themes to ground independent analysis of the third focus group transcript by two team members, followed by a consensus meeting to confirm aligned themes to text.

Unrecognized Experiences of Normalization of Disability Discrimination

In Stage 1, participants’ descriptions of their health care experiences portray providers’ limited knowledge of disability rights, not recognizing acts of discrimination, and justifying acts of discrimination. Participants described experiences or interactions with providers, the system, or its policies as barriers to the care they need without attributing them to NODD. One participant epitomized this stage of the PDHLC. This participant recalled a recent visit to the dentist that illustrates the lack of recognition of discriminatory practices and internalizing an inaccessible environment as the PWPD’s responsibility to navigate on their own:

Another participant described a recent visit while justifying the inequitable care receipt: “I can’t get on the table, so she was doing the best of her ability” (Focus Group 2, Participant 3).

A subtheme that emerged from Stage 1 is the common occurrence of experiences of medicalization. We define this subtheme as a process in which health care providers and systems view disability through the lens of the medical model, leading to patient care focused solely on “fixing” the disabled body, being unable to see past a person’s disability, and treating disability as an illness rather than as a long-term social state (Oliver, 1996). These experiences were vocalized by multiple participants as a source of frustration but fell short of being aligned to discrimination or provider bias. “[Physical disability is] the first thing people see, and they stop right there, you know? I think with health care that’s a problem” (Focus Group 3, Participant 2). Another participant spoke about the conflicting agendas of doctors who focus more specifically on curing the disability:

Knowing What You Need

The second stage of the PDHLC describes a process of transformative learning that PWPDs experience as they come to understand that there may be times when the care recommendations of providers conflict with their own lived knowledge of what works and what does not in managing their health. Knowing what you need includes learning to question medical authority and developing a sense of control over your own health care needs, possibly through trial and error. This stage goes beyond satisfaction with the receipt of basic health care to include expecting provider respect and treatment with dignity as well as rejecting NODD. Participants voiced their opinions on their individual needs and the needs of the disability community at large: “A disabled person needs to link up with a support group, you know . . . because other disabled individuals can tell you things that a doctor can’t” (Focus Group 2, Participant 3).

Noticing Differences

In the third stage, the PWPD starts to sense that something is different about the health care they receive compared with those without disabilities, going beyond the individual experience. This treatment includes describing how providers across experiences avoid answering questions about the PWPD’s health and perseverating on the disability. Participants described recognizing similar and repeated slights or microaggressions across providers and noticing differences in health care between institutions. In this stage, a PWPD may feel unsure about the quality of health care without naming it as inequitable. One participant described their realization that even a specialist might not understand health concerns of a PWPD: “I thought doctors knew everything at first. All doctors knew everything, but . . . they don’t know. They don’t know about disability” (Focus Group 3, Participant 4).

Beyond provider interactions, another participant recalled their experience at an accessible facility as something “special” versus an example of how all clinics should be: “The place for me to go and have my mammogram had a special [table] that lowered down . . . that was such a wonderful place . . . I just pushed a button and the doors opened” (Focus Group 3, Participant 4).

Although this participant described this facility as accessible, they simultaneously qualified this experience as unique in comparison with other health care visits. In addition, although this participant recognized this experience as different, they failed to equate times without accommodations as discrimination. Similar descriptions of noticing differences in care without claims of inequity were heard from multiple participants.

Emerging Understanding

In this fourth stage, a PWPD will begin to recognize differences in health care quality as a result of personal, inequitable experiences relating specifically to disability. For example, a PWPD would fall in this stage if they recognize that the level of care negatively affects their health outcomes, describe system barriers in health care relating to disability, or recognize that their health care needs are unique because of disability. In addition, they have emerging consciousness that inadequate care by individual providers is linked to a lack of understanding of disability across health care. A discussion between 2 participants illustrates this point of realization that differences in health care may be related to disability and wheelchair use: “Oh, you didn’t [get weighed]? They didn’t weigh you—the nurse? Wow!” (Focus Group 2, Participant 2). “Yeah, that is kind of weird. They didn’t weigh me . . . they just took my blood pressure” (Focus Group 2, Participant 1).

Another participant’s response to being asked what they look for in a provider illuminates a concern of many PWPDs, which is unfamiliar to a person without disability and unrecognized by people at early stages along the PDHLC:

Learning to Take Personal Action

The fifth stage is defined by participants as recognizing the need to take proactive steps to avoid unsatisfying health care on the basis of past experience. This behavior may manifest as a PWPD researching ways to meet their own health care needs, seeking out information from others in the disability community, switching providers because of inequitable care, or knowing in advance to question providers related to care. One participant described how he circumvented limited provider time in which too much time was focused on disability instead of discussing primary health-related issues during appointments: “My friend [a PWPD] and I, we talk a lot and sometimes we make a list and then within that 5 or 7 minutes, you just plow through those questions [during the appointment]” (Focus Group 2, Participant 2).

Another participant talked about their experience of being newly diagnosed and realizing the need to take personal action to find resources and learn about their condition:

Critical to this narrative is the apparent failure of the provider to offer resources and support.

Normalization of Disability Discrimination Is Systemic

In the sixth stage, people synthesize experiences across contexts and providers, recognizing inequitable care as disability-based discrimination. They also realize this occurrence as a shared group experience versus an individual one. One participant described their knowledge that disability is a shared experience—one that is difficult for a person and potentially a provider without disability to understand:

This step might occur simultaneously with the seventh level of the continuum because learning to advocate for oneself may facilitate recognition of NODD. In this level, the person learns to be assertive when requesting the care they need, recognizes that differences in health care are a result of NODD rather than a result of personal characteristics, learns to navigate the barriers of NODD, and recognizes the need to advocate for equity in health care. One participant emphasized that experiences of discrimination are linked to group identity: “We get treated like third-class citizens, or they don’t care, you know?” (Focus Group 2, Participant 2).

Taking Control

The seventh and final stage of the PDHLC represents what we believe is the most informed stage of disability health literacy. A PWPD at this stage explicitly advocates for their rights to equitable care, often proactively, and understands how access rights apply to the context of health care and other settings. These people know they are the disability experts, and they educate providers on the needs of PWPDs, use peer supports to answer health-related questions, and encourage other PWPDs to do the same.

One participant communicated connecting with others in the disability community who aid her in learning about her health:

Two participants advocated for the training of health care providers to better accommodate PWPDs: “We have to advocate for ourselves, but in a hospital, we cannot be advocates . . . we need someone else to advocate for us” (Focus Group 2, Participant 3). “In medical school they need to have a course about the needs of people with disabilities” (Focus Group 2, Participant 2).

Across focus groups and between participants, we found a vast range of disability health literacy and discovered processes that a PWPD moves through in recognizing the need for accommodation. What also emerged is an understanding that although the PDHLC may be a linear progression, it may also be variable because each person has a unique set of experiences that may influence where they fall on the continuum. It may be that some PWPDs skip stages of the continuum, whereas others may be at multiple stages at one time.