Managing health problems in people with intellectual disabilities

Valk, H.M.J. van Schrojenstein Lantman-de; Walsh, Patricia Noonan

doi:10.1136/bmj.a2507

Cited by 153 publications

(130 citation statements)

References 25 publications

(15 reference statements)

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“…Therefore, our findings need confirmation, including an assessment of the pathways leading to such high prevalence rates. Anyhow, our results show a very high burden of chronic diseases among ID-adolescents, and thus adequate care is highly needed (Cooper et al, 2004;Van Schrojenstein Lantman-de Valk & Walsh, 2008).…”

Section: Discussionmentioning

confidence: 78%

“…It is a time of life marked by physical, emotional, behavioural and social changes, but also by relatively high risks for the onset of (chronic) health problems (Patton & Viner, 2007;Sawyer et al, 2007;Turk, Graham, & Verhulst, 2007). Literature about young people with ID suggests that adolescents have a greater risk on chronic diseases compared to adolescents without ID (Cooper, Melville, & Morrison, 2004;Emerson & Hatton, 2007;Emerson, 2003;Jansen, Krol, Groothoff, & Post, 2004;Kolaitis, 2008;Magnusson & Saemundsen, 2001;Petterson et al, 2007;Van Schrojenstein Lantman-de Valk & Walsh, 2008;Voigt et al, 2006), but inclusive data on this are lacking.…”

Section: Introductionmentioning

confidence: 99%

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Prevalence of chronic diseases in adolescents with intellectual disability

Oeseburg

Jansen

Dijkstra

et al. 2010

Research in Developmental Disabilities

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Section: Discussionmentioning

confidence: 78%

Section: Introductionmentioning

confidence: 99%

Prevalence of chronic diseases in adolescents with intellectual disability

Oeseburg

Jansen

Dijkstra

et al. 2010

Research in Developmental Disabilities

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“…They have poorer health than the general population, with a much higher prevalence of certain conditions and diseases, which often go undiagnosed. [9][10][11][12][13] These differences in health status are, to an extent, avoidable and can therefore be described as health inequalities. The health inequalities, as described in the following section, are substantial.…”

Section: Health Inequalitiesmentioning

confidence: 99%

Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study

Tuffrey‐Wijne

Giatras

Goulding

et al. 2013

Health Services and Delivery Research

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BackgroundThere has been consistent evidence that people with learning disabilities experience health inequalities and poor NHS health-care provision, leading to avoidable harm and premature, avoidable death.ObjectivesTo describe the factors in NHS hospitals that promote or compromise a safe environment for patients with learning disabilities, in the light of national recommendations that hospitals should (1) identify patients with learning disabilities, (2) provide reasonably adjusted services, (3) involve carers as partners in care and (4) include patient and carer views in service development.DesignA 21-month mixed-method study carried out between 2011 and 2013, using questionnaire surveys, interviews, observation and monitoring of safety incidents.SettingSix NHS hospitals in the south of England.MethodsThe study employed mixed methodologies in three stages. Stage I involved mapping the systems and structural changes within each hospital site, with senior strategic managers asked to provide data on relevant policies. Stage II examined the effectiveness of implemented measures. Methods for this stage included an electronic questionnaire survey sent to all clinical staff (n = 990); face-to-face semi-structured interviews with clinical staff and strategic hospital managers (n = 68); semi-structured face-to-face interviews with adults with learning disabilities who had used the hospital in a 12-month period (n = 33); questionnaire survey (n = 88) and semi-structured interviews (n = 37) with carers of patients with learning disabilities who had been a patient during the 12-month period; and participant observation with patients (n = 8). Stage III assessed generalisability to other vulnerable patient groups and involved expert panel discussions with senior managers and senior clinicians at four sites (n = 42).ResultsExamples of good practice were not consistently replicated hospital-wide. The most common safety issues were delays and omissions of treatment and basic care. The main barriers to better and safer hospital care for people with learning disabilities were (1) the invisibility of patients with learning disabilities within hospitals, owing to a lack of effective flagging systems and a lack of staff knowledge and willingness to flag this group; (2) poor staff understanding of the specific vulnerabilities of people with learning disabilities, the reasonable adjustments to services that these patients may need and the Mental Capacity Act (Great Britain.Mental Capacity Act 2005. Chapter 9. London: The Stationery Office; 2005); (3) a lack of consistent and effective carer involvement and misunderstanding by staff of the carer role; and (4) a lack of clear lines of responsibility and accountability for the care of each patient with learning disabilities. The main enablers were the learning disability liaison nurse (LDLN), provided that this role was properly supported by senior management and carried sufficient authority to change practice; and ward managers who facilitated a positive ward culture and ensured consistent implementation of reasonable adjustments.ConclusionsThe vulnerabilities of people with learning disabilities can, and do, lead to compromised patient safety in NHS hospitals. Further research is needed as follows: (1) identifying the most frequently needed reasonable adjustments within the hospital care pathways of people with learning disabilities and their cost implications; (2) identifying the most effective structures for ensuring clear lines of responsibility and accountability for the care of patients with learning disabilities, including support needed by ward managers in order to carry day-to-day accountability; (3) investigating practical and effective ways of flagging patients with learning disabilities across NHS services and within NHS hospitals; (4) investigating, implementing and evaluating protocols for shared care; (5) evaluating LDLN posts nationwide; and (6) extending research recommendations (1) and (3) to patients with dementia and those with mental health problems.Study registrationComprehensive Clinical Research Network Portfolio, 10998; Integrated Research Application System Coordinated System for gaining NHS Permission, 74907.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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“…People with intellectual disabilities (ID) experience up to twice as many health problems as the general population (Van Schrojenstein Lantman-De Valk & Walsh, 2008). They have very low physical activity levels (Temple, Frey, & Stanish, 2006;Hilgenkamp, Reis, Van Wijck, & Evenhuis, 2012) and both obesity and overweight are highly prevalent in this population (Melville, Hamilton, Hankey, Miller & Boyle, 2007;Waninge et al, 2013).…”

Section: Introductionmentioning

confidence: 99%

“…Considering the cognitive impairments of people with ID and the barriers described above, programme materials have to be changed to be accessible for people with ID (Elinder, Bergström, Hagberg, Wihlman, & Hagströmer, 2010). Additionally, people with ID experience barriers to access lifestyle change services (Van Schrojenstein Lantman-De Valk & Walsh, 2008).…”

Section: Introductionmentioning

confidence: 99%

Use of behaviour change techniques in lifestyle change interventions for people with intellectual disabilities: A systematic review

Willems

Hilgenkamp

Havik

et al. 2017

Research in Developmental Disabilities

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Background People with intellectual disabilities (ID) experience more health problems and have different lifestyle change needs, compared with the general population.Aims To improve lifestyle change interventions for people with ID, this review examined how behaviour change techniques (BCTs) were applied in interventions aimed at physical activity, nutrition or physical activity and nutrition, and described their quality. Methods and ProceduresAfter a broad search and detailed selection process, 45 studies were included in the review. For coding BCTs, the CALO-RE taxonomy was used. To assess the quality of the interventions, the Physiotherapy Evidence Database (PEDro) scale was used. Extracted data included general study characteristics and intervention characteristics. Outcomes and ResultsAll interventions used BCTs, although theory-driven BCTs were rarely used.The most frequently used BCTs were 'provide information on consequences of behaviour in general'and 'plan social support/social change'. Most studies were of low quality and a theoretical framework was often missing. Conclusion and implications This review shows that BCTs are frequently applied in lifestyle changeinterventions. To further improve effectiveness, these lifestyle change interventions could benefit from using a theoretical framework, a detailed intervention description and an appropriate and reliable intervention design which is tailored to people with ID. What this paper addsSo far, lifestyle change interventions for people with ID do not seem to be very effective: not only are well-designed studies scarce but the description of the intervention content is often lacking sufficient detail to replicate or learn from the studies. This review aims to explore the use of behaviour change techniques (BCTs) in lifestyle interventions for people with ID. We identify key concepts, types of evidence and gaps in research, and provide recommendations for future research studies. Therefore, this review adds to existing knowledge by identifying how to improve the effectiveness of lifestyle interventions via the inclusion of BCTs.

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Managing health problems in people with intellectual disabilities

Cited by 153 publications

References 25 publications

Prevalence of chronic diseases in adolescents with intellectual disability

Prevalence of chronic diseases in adolescents with intellectual disability

Identifying the factors affecting the implementation of strategies to promote a safer environment for patients with learning disabilities in NHS hospitals: a mixed-methods study

Use of behaviour change techniques in lifestyle change interventions for people with intellectual disabilities: A systematic review

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