Health care experiences and perceptions among people with and without disabilities (original) (raw)
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Health care access and quality for persons with disability: Patient and provider recommendations
Disability and health journal, 2018
Significant disparities in health care access and quality persist between persons with disabilities (PWD) and persons without disabilities (PWOD). Little research has examined recommendations of patients and providers to improve health care for PWD. We sought to explore patient and health care provider recommendations to improve health care access and quality for PWD through focus groups in the physical world in a community center and in the virtual world in an online community. In all, 17 PWD, 4 PWOD, and 6 health care providers participated in 1 of 5 focus groups. Focus groups were conducted in the virtual world in Second Life with Virtual Ability, an online community, and in the physical world at Agape Community Center in Milwaukee, WI. Focus group data were analyzed using a grounded theory methodology. Themes that emerged in focus groups among PWD and PWOD as well as health care providers to improve health care access and quality for PWD were: promoting advocacy, increasing awar...
MedGenMed: Medscape general medicine
The ability of persons with disabilities to access quality primary care in Canada is not well documented. This article reports on the perceived quality of primary care received by persons with disabilities by looking at utilization of elements of the health maintenance examination, referrals, health promotion, healthcare provider role clarification, and satisfaction. Methods: A sample of convenience was undertaken whereby an anonymous self-report questionnaire, which included the Short Form-36 Health Survey, was mailed to members of several Canadian disability organizations and persons discharged within the last 2 years from a rehabilitation hospital. The Statistical Package for the Social Sciences was used to analyze the data. Results: A total of 201 individuals (20% response rate) completed and returned the surveys, 61.2% of whom were women. Some elements of the health maintenance examination, including Pap tests, mammogram referral, and measurement of blood pressure (BP), were not markedly different from population census data. Inquiry around health promotion was low, as 61.7% of our sample did not receive a functional assessment, 58.2% were not asked about emotions, and only 10% were asked about physical or sexual violence. Diet, exercise, smoking, pain, sleep, alcohol, sex, sexually transmitted diseases (STDs), and reproductive choices were discussed in varying degrees. Interpretation: Among respondents in our survey, disabled women were able to access important screening tests. Health promotion services, however, were often not offered. The particular healthcare needs of disabled women and men --eg, having a condition that may be progressive, being at increased risk of secondary disability and the added effects of aging --may be addressed more effectively by including health promotion. It is proposed that functional assessment, emotional inquiry, and role clarification could improve the delivery of health promotion and the perceived quality of care received.
Journal of Intellectual Disability Research, 2010
Background Care and service trajectories for people with intellectual disabilities (ID) are routes within the healthcare delivery system that consist of all the steps that people with ID and their families have to take in order to realise the needed care and services. In contrast to the growing systemorientated knowledge concerning quality of care delivered through collaborative relationships between care providers, specific user-orientated knowledge regarding the quality of care and service trajectories is largely lacking. Aim This article aims to describe the development of the QUALITRA-ID; a user-orientated interview concerning the quality of care and service trajectories for people with ID. Methods First, the phenomenon 'care and service trajectories' is conceptualised on the basis of document analysis and semi-structured interviews with key informants in the field of health care for people with ID. Second, the quality of care and service trajectories is operationalised by means of eight focus group discussions with intellectually disabled persons and their parents/relatives and a review of the literature. Third, the QUALITRA-ID is constructed using the results of the conceptualisation and operationalisation of the phenomenon. Fourth, the QUALITRA-ID is refined in two stages that were concerned with examining the feasibility, understandability and completeness of the QUALITRA-ID. The second stage was also concerned with the first quality assessment among people with ID. Results The final result is a 24-item QUALITRA-ID consisting of a personal conversation and a closed-ended part.
Confronting Barriers to Equitable Care: A Qualitative Analysis of Factors That Inform People with Mobility Disabilities' Decisions to Self-Advocate in the Context of Healthcare, 2024
Background. One in 5 people in the United States live with disability; however, the public health needs of this community have been largely overlooked. Although U.S. law mandates the availability of accessible medical exam equipment, people with mobility disabilities (PWMD) frequently encounter barriers that require self-advocacy to receive basic primary care. Objective. Te purpose of this study was to qualitatively explore the impact of healthcare access barriers-specifcally, the experiences of the need to selfadvocate and factors that inform decisions to make accommodation requests-for PWMD. Methods. Qualitative semistructured interviews were performed across two phases of data collection with each of the 6 participants. Interpretative phenomenological analysis was used to highlight the essence of participants' experiences in making decisions to request healthcare accommodation. Results. Participants included a purposive sample of self-advocates with physical disabilities (3 men and 3 women). While individual approaches to self-advocacy varied, participants identifed a process of "recognizing the normalization of disability discrimination and disability stigma" which necessitates the development of "agency in self-advocacy." Tis process has a lasting impact on people that includes a shared embodied experience of disability, as well as a sense of empowerment based on their collective and individual identities. Conclusions. Findings have implications for supporting individual disability consumer advocacy eforts as well as the need to address the normalization of disability discrimination within healthcare systems levels.
Complaints on Health Services: A Survey of Persons With Disabilities
Journal of Disability Policy Studies, 2010
This study examined the extent to which people with disabilities express their voices and present complaints about the quality of health services, and how their complaints are submitted, compared to nondisabled persons. Data were collected via two national surveys from 243 people with disabilities and 956 nondisabled respondents in Israel who perceived themselves to be aggrieved by their health providers. People with disabilities complained only slightly more often than nondisabled persons, and the majority of complaints were submitted locally and informally by both groups. Since people with disabilities use health services more frequently than nondisabled persons, the fact that a majority of customers with disabilities remains silent causes the health system to lose important information regarding areas for redress or for service recovery. The results have implications for needed actions by health providers and outreach efforts by advocacy groups as well as for further policy and research directions that can improve the quality of health services to people with disabilities.
Social representations of primary care physicians about health care for people with disabilities
Interface - Comunicação, Saúde, Educação
The objective was to analyze the Social Representations of physicians working in the Family Health Strategy on health care for people with disabilities (PwD). The Theory of Social Representations was used, with a structural approach of the Central Nucleus Theory based on the technique of evoking words analyzed by the EVOC® and IRAMUTEC® software. 109 physicians participated, predominantly younger individuals and women. Care to PwD is guided by an incomplete, unsafe practice, permeated by the fear of doctors who mention gaps in the professional training process, in addition to communication difficulties with patients identified as PwD. Few physicians have more inclusive reports on PwD care. The predominant perceptions are restricted to the body, standardized by the biomedical model and ignoring social structures.
Assessment of Primary Care Services and Perceived Barriers to Care in Persons with Disabilities
American Journal of Physical Medicine & Rehabilitation, 2009
Objective: To determine what percentage of persons with disabilities have a primary care provider, participate in routine screening and health maintenance examinations, and identify perceived physical or physician barriers to receiving care. Design: A total of 344 surveys, consisting of 66 questions, were collected from adults with disabilities receiving care at an outpatient rehabilitation clinic. Results: A total of 89.5% (95% CI 86.3%-92.8%) of participants reported having a primary care physician. Younger persons (P Ͻ 0.0001), men (P Ͻ 0.02), persons with brain injury (P Ͻ 0.05), or persons with amputations (P Ͻ 0.05) were less likely to have a primary care physician. Participant report of screening for alcohol, nonprescription drug use, and safety with relationships at home ranged from 26.6% to 37.5% compared with screening for depression, diet, exercise, and smoking (64.5%-70%). Completion rates of age-and gender-appropriate health maintenance examinations ranged from 42.4% to 90%. A total of 2.67% of participants reported problems with physical access at their physician's office, and 36.4% (95% CI 30.8%-42.1%) of participants reported having to teach their primary care physician about their disability. Conclusions: Most persons with disabilities have a primary care physician. In general, completion rates for routine screening and health maintenance examinations were high. Perceived deficits in primary care physicians' knowledge of disability issues seem more prevalent than physical barriers to care.
Disabled healthcare professionals’ diverse, embodied, and socially embedded experiences
Advances in Health Sciences Education
Disabled people are underrepresented within healthcare professions, although their participation has potential benefits for them personally, and for broader society. Disabled peoples' participation in healthcare professions is limited by assumptions about disability. Little research explores how healthcare professions can be organized to support disabled peoples' employment. Within a critical realist paradigm influenced by grounded theory, this study used interviews to explore the experiences of 56 disabled healthcare clinicians and students, and advance a conceptual taxonomy of disability experience within healthcare professions. Participants describe their experiences of disability in the healthcare professional context in terms of characteristics and dimensions of disability-how characteristics interact with factors within healthcare training and practice environments. We profile two particularly salient dimensions of the disability experience: visibility and onset of disability. These are developed to describe complexity and specificity of the experiences of individuals negotiating the healthcare context. Among participants there is extensive heterogeneity related to the experience of disability in healthcare professional contexts. Despite some having similar disability characteristics, no two individuals experience the same combination of characteristics and dimensions of disability. Given the complexity of experiences for disabled healthcare professionals/students, a taxonomy for conceptualizing this experience is presented. Readers are encouraged to consider the taxonomy through which they might conceptualize individual, embodied, and socially embedded experiences of disabled healthcare professionals and students. Stakeholders involved in healthcare professions and education should consider this shift in perspective, with a view to increasing access of disabled people to health professional practice.