Division of General Internal Medicine, Massachusetts General Hospital, Boston, Massachusetts.
3D Research Partners LLC, Harvard, Massachusetts.
JAMA Health Forum. 2023 Sep 1;4(9):e233180. doi: 10.1001/jamahealthforum.2023.3180.
Most 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.
To examine whether impairment and disability identity have different associations with perceived health care experiences and explore factors associated with disability identification.
DESIGN, SETTING, AND PARTICIPANTS: This 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.
Using 8 survey questions, participants were grouped according to presence of impairment and disability identity.
Likert 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.
Of 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.
In 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.
大多数研究使用功能障碍来指定残疾人群体。然而，一些有功能障碍的人并不认为自己残疾。基于功能状态的定义，研究表明残疾人群体的护理质量存在差异。
研究损伤和残疾认同与感知医疗保健体验有何不同，并探讨与残疾认同相关的因素。
设计、地点和参与者：本横断面研究使用了一项针对美国成年人的全国代表性调查，该调查于 2021 年 4 月 20 日至 5 月 31 日进行，并于 2022 年 6 月 1 日至 8 月 31 日进行分析。调查参与者为 1822 名讲英语或西班牙语的成年人，他们通过在线或电话回答问题。
使用 8 个调查问题，根据损伤和残疾认同的存在情况将参与者分组。
信任、尊重和公平（以下简称程序正义措施）的李克特量表测量被二分为两类。比较了各组之间的社会人口特征和程序正义反应率。使用多变量逻辑回归调整基线特征，以（1）估计损伤和残疾认同与程序正义感知的关联，（2）探讨与残疾认同相关的因素。分析应用了调查权重。
在邀请的 6126 人中，有 1854 人（30.3%）完成了调查。由于性别不可报告，有 32 人被排除在外，最终分析样本为 1822 名参与者。有损伤的参与者（n=816；平均[标准差]年龄，48.1[17.0]岁；51.2%女性，48.8%男性）在 10 项程序正义措施中的 7 项（粗评）上的感知比没有损伤的参与者（n=1006；平均[标准差]年龄，49.6[18.1]岁，55.1%女性，44.9%男性）差。在有损伤的受访者中，那些认同（n=340）与不认同（n=476）自己残疾的人对临床医生沟通努力的评价更好（付出了很多努力，38.8% vs 31.0%），对健康目标的理解也更好（非常或相当理解，77.2% vs 70.1%），但对尊重的评价更差（几乎从不感到自卑或被轻视，66.1% vs 59.1%）。残疾认同与更多的不公平待遇报告（31.0% vs 22.4%；调整后的优势比，1.65；95%置信区间，1.12-2.42）和更害怕提问或不同意（50.5% vs 40.1%；调整后的优势比，1.51；95%置信区间，1.04-20.19）有关。收入和就业与残疾认同有关。
在这项针对美国成年人的横断面调查研究中，根据损伤状况和残疾认同定义的不同，医疗保健感知存在差异。这些发现表明，除了功能措施外，卫生系统还应捕捉残疾认同，以更好地解决有损伤人群的差异问题。
