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Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers.

ABSTRACT: People with intellectual disability have a higher prevalence of physical health problems but often experience disparities in accessing health care. In England, a number of legislative changes, policies and recommendations have been introduced to improve health care access for this population. The aim of this qualitative study was to examine the extent to which patients with intellectual disability and their carers experience discrimination or other barriers in accessing health services, and whether health care experiences have improved over the last decade years.Twenty nine participants (14 patient and carer dyads, and one carer) took part in semi-structured interviews. The interviews were audio-taped and transcribed and analysed using thematic analysis. Eight themes were identified. Half the participants thought that the patient had been treated unfairly or had been discriminated against by health services. There were accounts of negative staff attitudes and behaviour, and failure of services to make reasonable adjustments. Other barriers included problems with communication, and accessing services because of lack of knowledge of local services and service eligibility issues; lack of support and involvement of carers; and language problems in participants from minority ethnic groups. Most participants were able to report at least one example of good practice in health care provision. Suggestions for improving services are presented.Despite some improvements to services as a result of health policies and recommendations, more progress is required to ensure that health services make reasonable adjustments to reduce both direct and indirect discrimination of people with intellectual disability.

SUBMITTER: Ali A

PROVIDER: S-EPMC3741324 | biostudies-other | 2013

REPOSITORIES: biostudies-other

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Project description:ImportancePatient-perceived barriers to hidradenitis suppurativa (HS) care are poorly understood. Understanding health care barriers is a critical first step toward improving care for this population.ObjectiveTo characterize the health care experiences of people living with HS, including perceived barriers and facilitators to health care access, and to elucidate potential associations among these barriers and facilitators, health care access, and disease activity.Design, setting, and participantsIn this qualitative study, an inductive thematic analysis was conducted on 45 in-depth, 60- to 90-minute semistructured interviews of 45 people with HS from diverse sociodemographic backgrounds that took place between March and April 2020. Individuals were eligible if they could speak English, were 18 years or older, and were diagnosed with HS. A diagnosis of HS was confirmed through physician diagnosis or through self-reported, affirmative response to the validated screening question, "Do you experience boils in your armpits or groin that recur at least every six months?"Main outcomes and measuresInterviews were audio recorded and transcribed verbatim. A modified grounded theory approach was used to develop the codebook, which investigators used for inductive thematic analysis.ResultsAmong the 45 participants included, the median (IQR) age was 37 (16) years, 33 (73%) were female, and 22 (49%) were White. There were 6 interrelated themes associated with participant-perceived barriers to accessing HS care: (1) bidirectional associations of disease activity and employment, (2) association of employment with health care coverage, (3) association of health care coverage with costs and perceived access to care, (4) association of costs with access to patient-centered care, (5) health care professional attitudes and knowledge influence patient-centered care and perceived access to care and disease activity, and (6) health system characteristics influence patient-centered care and associated costs, perceived access to care, and disease activity.Conclusions and relevanceThis qualitative study highlights themes that generate a conceptual model for understanding barriers that may act synergistically to limit health care access and influence disease activity. The disease activity of HS may be reduced when cycle elements are optimized. This study also highlights areas for future investigations and potential systems-level changes to improve access to patient-centered HS care.

Project description:ObjectiveNational Comprehensive Cancer Network (NCCN) guidelines recommend that patients with ovarian cancer receive surgical care from a gynecologic oncologist. However, 15%-30% of patients with ovarian cancer do not receive surgical care from this specialist. The reasons for this remain unknown. We aim at assessing the barriers and attitudes perceived by patients with ovarian cancer who did not receive their primary surgery from a gynecologic oncologist and by diagnosing providers in an exploratory qualitative study.Materials and methodsPatients and providers were sampled through the Iowa Cancer Registry. Participants were interviewed by telephone about barriers that patients face receiving surgical care from a specialist. Interviews were transcribed verbatim, and thematic analysis was completed by two team members.FindingsProviders (n = 10, 13% participation rate) identified many system-level barriers, including poor provider-to-provider communication, long time-to-surgery wait times, and a limited number of gynecologic oncologists working in their referral range. Patients (n = 16, 38% participation rate) denied system-level barriers; however, no patients reported receiving a referral to a gynecologic oncologist. This, in and of itself, constitutes a system-level barrier. Providers identified many barriers that their patients face, whereas patients failed to identify these barriers and denied facing them. Patients described the shock that they experienced after diagnosis and its limitations on their decision-making process. Both providers and patients agreed that the providers were influential in determining care decisions.DiscussionThere is a divergence in the perceptions of barriers to care between providers and patients. Open discussions are needed about options and clinical guidelines for surgical ovarian cancer care. Further research is needed to develop and evaluate mechanisms to improve provider-to-patient discussions about surgical recommendations.

Project description:IntroductionOver the past decade, the number of refugees arriving in the United States (U.S.) has increased dramatically. Refugees arrive with unmet health needs and may face barriers when seeking care. However, little is known about how refugees perceive and access care when acutely ill. The goal of this study was to understand barriers to access of acute care by newly arrived refugees, and identify potential improvements from refugees and resettlement agencies.MethodsThis was an in-depth, qualitative interview study of refugees and employees from refugee resettlement and post-resettlement agencies in a city in the Northeast U.S. Interviews were audiotaped, transcribed, and coded independently by two investigators. Interviews were conducted until thematic saturation was reached. We analyzed transcripts using a modified grounded theory approach.ResultsInterviews were completed with 16 refugees and 12 employees from refugee resettlement/post-resettlement agencies. Participants reported several barriers to accessing acute care including challenges understanding the U.S. healthcare system, difficulty scheduling timely outpatient acute care visits, significant language barriers in all acute care settings, and confusion over the intricacies of health insurance. The novelty and complexity of the U.S. healthcare system drives refugees to resettlement agencies for assistance. Resettlement agency employees express concern with directing refugees to appropriate levels of care and report challenges obtaining timely access to sick visits. While receiving emergency department (ED) care, refugees experience communication barriers due to limitations in consistent interpretation services.ConclusionRefugees face multiple barriers when accessing acute care. Interventions in the ED, outpatient settings, and in resettlement agencies, have the potential to reduce barriers to care. Examples could include interpretation services that allow for clinic phone scheduling and easier access to interpreter services within the ED. Additionally, extending the Refugee Medical Assistance program may limit gaps in insurance coverage and avoid insurance-related barriers to seeking care.

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Discrimination and other barriers to accessing health care: perspectives of patients with mild and moderate intellectual disability and their carers.

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