Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness

Abstract

ImportanceMost studies use impaired functioning alone to specify populations with disabilities. However, some people with functional impairments do not identify as disabled. With functional status-based definitions, studies have shown disparate care quality for people with disabilities.ObjectiveTo examine whether impairment and disability identity have different associations with perceived health care experiences and explore factors associated with disability identification.Design, Setting, and ParticipantsThis cross-sectional study used a nationally representative survey of US adults conducted from April 20 through May 31, 2021, and analyzed between June 1 and August 31, 2022. Survey participants were 1822 English- or Spanish-speaking adults responding either online or via telephone.ExposuresUsing 8 survey questions, participants were grouped according to presence of impairment and disability identity.Main Outcomes and MeasuresLikert scale measures of trust, respect, and fairness (henceforth, procedural justice measures) were dichotomized. Sociodemographic characteristics and rates of procedural justice responses were compared across groups. Multivariable logistic regressions adjusting for baseline characteristics were performed to (1) estimate associations of impairment and disability identity with perceptions of procedural justice and (2) explore factors associated with disability identification. Analyses applied survey weights.ResultsOf 6126 individuals invited to participate, 1854 (30.3%) completed the survey. Thirty-two were excluded due to unreportable gender, for a final analytic sample of 1822 participants. Participants with impairments (n = 816; mean [SD] age, 48.1 [17.0] years; 51.2% women, 48.8% men) had worse perceptions on 7 of 10 procedural justice measures (crude) compared with those without impairments (n = 1006; mean [SD] age, 49.6 [18.1] years, 55.1% female, 44.9% male). Among respondents with impairments, those who did (n = 340) vs did not (n = 476) identify as disabled gave better ratings for clinician communication efforts (a lot of effort, 38.8% vs 31.0%) and having health goals understood (understood very or fairly well, 77.2% vs 70.1%) but gave worse ratings for respect (almost never felt inferior or talked down to, 66.1% vs 59.1%). Disability identification was associated with more reports of unfair treatment (31.0% vs 22.4%; adjusted odds ratio, 1.65; 95% CI, 1.12-2.42) and of being unafraid to ask questions or disagree (50.5% vs 40.1%; adjusted odds ratio, 1.51; 95% CI, 1.04-20.19). Income and employment were associated with disability identification.Conclusions and RelevanceIn this cross-sectional survey study of US adults, health care perceptions differed between groups defined by impairment status and disability identity. These findings suggest that, alongside functional measures, health systems should capture disability identity to better address disparities for people with impairments.

Measuring disability among U.S. adolescents and young adults: A survey measurement experiment

“…On the other hand, both the WG-SS and ACS substantially undercount those with mental health conditions ( Hall et al, 2022 ); with the WG-SS capturing only about 50 % of people with psychosocial disabilities ( Washington Group on Disability Statistics, 2020 ). Additionally, in line with the social model of disability ( World Health Organization, 2001 ); designers of some questionnaires have moved away from the use of the word “disability” ( Miller et al, 2011 ); while the single-item question specifically uses the word “disability.” Conversely, however, a recent survey study found that 39.2 % of respondents who answered “yes” to the question, “Do you have a disability?” did not answer “yes” to any of the ACS functional disability questions, indicating that a substantial portion of individuals identifying as having a disability are not captured by functional questions, and affirming previous findings from the NSHD ( Hall et al, 2022 , Salinger et al, 2023 ).…”

Poetry in Motion

“…A recent survey suggests that people with functional impairment who do not identify as having a disability report less respect from clinicians compared to people without impairments; they also perceive the unfair treatment experienced by disabled–identified patients . Might poetry help illuminate and ameliorate these kinds of health inequities?…”

Errors in Table 2

“…In the Original Investigation titled “Impairment and Disability Identity and Perceptions of Trust, Respect, and Fairness,” 1 published on September 22, 2023, in Table 2, the crude P value for age ≥75 years was missing a decimal place; additionally, some “NA” and “1 [Reference]” labels had been mistakenly transposed across some cells in the odds ratio and P value columns. This article has been corrected.…”