Access to health care for people with learning disabilities in the UK: mapping the issues and reviewing the evidence

Alborz, Alison; McNally, Rosalind; Glendinning, Caroline

doi:10.1258/1355819054338997

Cited by 145 publications

(157 citation statements)

References 34 publications

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“…Studies from the United States have described that using a computer interface as part of the registration process is efficient and feasible. 32,41 Participants in other studies have also reported broad support for collecting sociodemographic data, with some reservations if it is unclear why the data are being collected. 28,29,42 Similar to our study, others have found that race and ethnicity questions can be controversial, something that can be ameliorated by allowing patients to selfidentify in their own terms.…”

Section: Discussionmentioning

confidence: 99%

Building a Foundation to Reduce Health Inequities: Routine Collection of Sociodemographic Data in Primary Care

Pinto

Glattstein-Young

Mohamed

et al. 2016

The Journal of the American Board of Family Medicine

114

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Introduction: Detailed data on social determinants of health can facilitate the identification of inequities in access to health care. We report on a sociodemographic data collection tool used in a family medicine clinic.Methods: Four major health organizations in Toronto collaborated to identify a set of 14 questions that covered a range of social determinants of health. These were translated into 13 languages. This survey was self-administered using an electronic tablet to a convenience sample of 407 patients in the waiting room of a primary care clinic. Data were uploaded directly to the electronic medical record.Results: The rate of valid responses provided for each question was high, ranging from 84% to 100%. The questions with the highest number of patients selecting "do not know" and "prefer not to answer" pertained to disabilities and income. Patients reported finding the process acceptable. In subsequent implementation across 5 clinics, 10,536 patients have been surveyed; only 724 (6.9%) declined to participate.

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Section: Discussionmentioning

confidence: 99%

Building a Foundation to Reduce Health Inequities: Routine Collection of Sociodemographic Data in Primary Care

Pinto

Glattstein-Young

Mohamed

et al. 2016

The Journal of the American Board of Family Medicine

114

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“…4 Severity levels for ID are typically categorised by broad intelligence quotient (IQ), alongside the required deficits in independent living skills, into mild (IQ [50][51][52][53][54][55][56][57][58][59][60][61][62][63][64][65][66][67][68][69], moderate (IQ [35][36][37][38][39][40][41][42][43][44][45][46][47][48][49], severe and profound (IQ < 20) ID. 5 Acknowledging the wide variation that exists between individuals with ID, typical abilities suggested for each category are outlined in Table 1 [based on World Health Organization (WHO) International Classification of Diseases, Tenth Edition (ICD-10)].…”

Section: Definition Of Intellectual Disability and Case Identificationmentioning

confidence: 99%

“…[63][64][65][66] Despite their increased health needs, they often find it difficult to access primary care services and to participate in health promotion activities. [67][68][69] Given the health inequalities among people with ID, and the possible increased risk of developing diabetes, people with ID have the potential to benefit from lifestyle changes (with appropriate support) that are addressed in lifestyle education programmes. However, the evidence base for diabetes prevention relates to the general adult population; literature focusing on ID is scarce.…”

Section: Diabetes Prevention In Adults With Intellectual Disabilitiesmentioning

confidence: 99%

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

Dunkley

Tyrer

Spong

et al. 2017

Programme Grants Appl Res

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BackgroundThe prevalence of type 2 diabetes mellitus (T2DM) and of cardiovascular disease (CVD) is believed to be higher among people with intellectual disability (ID) than in the general population. However, research on prevalence and prevention in this population is limited.ObjectivesThe objectives of this programme of work were to establish a programme of research that would significantly enhance the knowledge and understanding of impaired glucose regulation (IGR) and T2DM in people with ID; to test strategies for the early identification of IGR and T2DM in people with ID; and to develop a lifestyle education programme and educator training protocol to promote behaviour change in a population with ID and IGR (or at a high risk of T2DM/CVD).SettingLeicestershire, UK.ParticipantsAdults with ID were recruited from community settings, including residential homes and family homes. Adults with mild to moderate ID who had an elevated body mass index (BMI) of ≥ 25 kg/m2and/or IGR were invited to take part in the education programme.Main outcome measuresThe primary outcome of the screening programme was the prevalence of screen-detected T2DM and IGR. The uptake, feasibility and acceptability of the intervention were assessed.Data sourcesParticipants were recruited from general practices, specialist ID services and clinics, and through direct contact.ResultsA total of 930 people with ID were recruited to the screening programme: 58% were male, 80% were white and 68% were overweight or obese. The mean age of participants was 43.3 years (standard deviation 14.2 years). Bloods were obtained for 675 participants (73%). The prevalence of previously undiagnosed T2DM was 1.3% [95% confidence interval (CI) 0.5% to 2%] and of IGR was 5% (95% CI 4% to 7%). Abnormal IGR was more common in those of non-white ethnicity; those with a first-degree family history of diabetes; those with increasing weight, waist circumference, BMI, diastolic blood pressure or triglycerides; and those with lower high-density lipoprotein cholesterol. We developed a lifestyle educational programme for people with ID, informed by findings from qualitative stakeholder interviews (health-care professionals,n = 14; people with ID,n = 7) and evidence reviews. Subsequently, 11 people with ID (and carers) participated in pilot education sessions (two groups) and five people attended education for the feasibility stage (one group). We found that it was feasible to collect primary outcome measures on physical activity and sedentary behaviour using wrist-worn accelerometers. We found that the programme was relatively costly, meaning that large changes in activity or diet (or a reduction in programme costs) would be necessary for the programme to be cost-effective. We also developed a quality development process for assessing intervention fidelity.LimitationsWe were able to screen only around 30% of the population and involved only a small number in the piloting and feasibility work.ConclusionsThe results from this programme of work have significantly enhanced the existing knowledge and understanding of T2DM and IGR in people with ID. We have developed a lifestyle education programme and educator training protocol to promote behaviour change in this population.Future workFurther work is needed to evaluate the STOP Diabetes intervention to identify cost-effective strategies for its implementation.Trial registrationClinicalTrials.gov NCT02513277.FundingThe National Institute for Health Research Programme Grants for Applied Research programme and will be published in full inHealth Research Programme Grants for Applied Research; Vol. 5, No. 11. See the NIHR Journals Library website for further project information.

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“…Literature reviews and empirical studies that have examined reasons for non-participation in cervical screening programmes by women with intellectual disabilities have identified a number of specific barriers, including communication difficulties; perceived difficulties obtaining consent; attitudes of carers and staff; lack of accessible information; physical difficulties; limited liaison with specialist teams; and assumptions made by healthcare professionals (Stein and Allen, 1999;Broughton and Thomson, 2000;Broughton, 2002;Alborz et al, 2005;Wood and Douglas, 2007;Watts, 2008;Gribben and Bell, 2010).…”

Section: Introductionmentioning

confidence: 99%

The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities

Lloyd¹,

Coulson

2014

J Intellect Disabil

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Access from the University of Nottingham repository:http://eprints.nottingham.ac.uk/41591/1/The%20role%20of%20learning%20disability %20nurses%20in%20promoting%20cervical%20screening%20uptake%20in%20women %20with%20intellectual%20disabilities-%20a%20qualitative%20study%20AAM.pdf Copyright and reuse:The Nottingham ePrints service makes this work by researchers of the University of Nottingham available open access under the following conditions. This article is made available under the University of Nottingham End User licence and may be reused according to the conditions of the licence. For more details see: http://eprints.nottingham.ac.uk/end_user_agreement.pdf A note on versions:The version presented here may differ from the published version or from the version of record. If you wish to cite this item you are advised to consult the publisher's version. Please see the repository url above for details on accessing the published version and note that access may require a subscription.For more information, please contact eprints@nottingham.ac.ukCitation : J Intellect Disabil. 2014 Jun;18(2):129-145. Epub 2014 Apr 3.The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities: A qualitative study. Original Article AbstractResearch suggests that the uptake of cervical screening by women with intellectual disabilities (commonly known as learning disabilities within UK policy frameworks, practice areas and health services) is poor compared to women without intellectual disabilities. The present study explored learning disability nurses' experiences of supporting women with intellectual disabilities to access cervical screening in order to examine their role in promoting attendance and elucidate potential barriers and facilitators to uptake. Ten participants recruited from a specialist learning disability service completed a semi-structured interview and data were analysed using experiential thematic analysis. Identified individual barriers included limited health literacy, negative attitudes and beliefs, and competing demands; barriers attributed to primary care professionals included time pressures, limited exposure to people with intellectual disabilities, and lack of appropriate knowledge, attitudes and skills. Attendance at cervical screening was facilitated by prolonged preparation work undertaken by learning disability nurses, helpful clinical behaviours in the primary care context, and effective joint-working.

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Access to health care for people with learning disabilities in the UK: mapping the issues and reviewing the evidence

Abstract: There are important gaps in the knowledge base on access to health care for this group. While these need to be addressed, developing strategies to overcome identified barriers should be a priority, along with fuller evaluation of existing innovations.

Cited by 145 publications

References 34 publications

Building a Foundation to Reduce Health Inequities: Routine Collection of Sociodemographic Data in Primary Care

Building a Foundation to Reduce Health Inequities: Routine Collection of Sociodemographic Data in Primary Care

Screening for glucose intolerance and development of a lifestyle education programme for prevention of type 2 diabetes in a population with intellectual disabilities: the STOP Diabetes research project

The role of learning disability nurses in promoting cervical screening uptake in women with intellectual disabilities

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