What do we know about the health and health care of people with intellectual disabilities from minority ethnic groups in the United Kingdom? A systematic review.

BACKGROUND: People with from minority ethnic communities face inequalities in health and health care. This systematic review considers the question of what we know about the health and health care of children and adults with intellectual disabilities from ethnic minority communities in the UK. METHOD: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes. RESULTS: Twenty-three studies were identified, most commonly focusing on South Asian communities. Very little information was identified on physical health or physical health care, with the identified evidence tending to focus on mental health care, access to specialist intellectual disability services, and inpatient services. CONCLUSION: Little is known about the health status of people with intellectual disabilities from minority ethnic groups in the UK. It is clear that they may experience barriers to accessing specialist intellectual disability services and other forms of health care.

Vaccine Coverage among Children with and without Intellectual Disabilities in the UK: Cross Sectional Study.

BACKGROUND: Universal childhood vaccination programmes form a core component of child health policies in most countries, including the UK. Achieving high coverage rates of vaccines is critical for establishing 'herd immunity' and preventing disease outbreaks. Evidence from the UK has identified several groups of children who are at risk of not being fully immunised. Our aim was to determine whether children with intellectual disabilities constitute one such group. METHODS: Secondary analysis of parental report data on child vaccination collected in the UK's Millennium Cohort Study when the children were 9 months, 3 years, 5 years and 14 years old. RESULTS: With one exception (MMR coverage at age 5) vaccination coverage rates were lower for children with intellectual disabilities (when compared to children without intellectual disability) for all vaccinations at all ages. Complete coverage rates were significantly lower for children with intellectual disabilities at ages 9 months (unadjusted PRR non-vaccination = 2.03 (1.14-3.60), p < 0.05) and 3 years (unadjusted PRR = 2.16 (1.06-4.43), p < 0.05), but not at age 5 years (unadjusted PRR = 1.91 (0.67-5.49)). HPV vaccination was lower (but not significantly so) at age 14 (PRR = 1.83 (0.99-3.37), p = 0.054). Adjusting PRRs for between group differences in family socio-economic position and other factors associated with coverage reduced the strength of association between intellectual disability and coverage at all ages. However, incomplete vaccination remained significantly elevated for children with intellectual disabilities at ages 9 months and 3 years. There were no statistically significant differences between parents of children with/without intellectual disability regarding the reasons given for non-vaccination. CONCLUSIONS: Children with intellectual disabilities in the UK are at increased risk of vaccine preventable diseases. This may jeopardise their own health, the health of younger siblings and may also compromise herd immunity.

The association between employment and the health of people with intellectual disabilities: A systematic review.

BACKGROUND: There is strong evidence indicating that paid employment is generally good for the physical and mental health of the general population. This systematic review considers the association between employment and the health of people with intellectual disabilities. METHODS: Studies published from 1990 to 2018 were identified via electronic literature databases, email requests and cross-citations. Identified studies were reviewed narratively. RESULTS: Twelve studies were identified. Studies were generally consistent in reporting an association between being in paid employment and better physical or mental health status. CONCLUSIONS: This review supports the view that the well-established association between employment and better health is similar for adults with and without intellectual disabilities. However, evidence establishing causality is lacking and further research to determine specific health benefits attributable to employment for people with intellectual disabilities and the causal pathways that operate is required.

Sexual activity and sexual health among young adults with and without mild/moderate intellectual disability.

BACKGROUND: There is widespread concern about the sexual 'vulnerability' of young people with intellectual disabilities, but little evidence relating to sexual activity and sexual health. METHOD: This paper describes a secondary analysis of the nationally representative longitudinal Next Steps study (formerly the Longitudinal Survey of Young People in England), investigating sexual activity and sexual health amongst young people with mild/moderate intellectual disabilities. This analysis investigated family socio-economic position, young person socio-economic position, household composition, area deprivation, peer victimisation, friendships, sexual activity, unsafe sex, STIs, pregnancy outcomes and parenting. RESULTS: Most young people with mild/moderate intellectual disabilities have had sexual intercourse by age 19/20, although young women were less likely to have sex prior to 16 than their peers and both men and women with intellectual disabilities were more likely to have unsafe sex 50% or more of the time than their peers. Women with intellectual disabilities were likely to have been pregnant and more likely to be a mother. CONCLUSION: Most young people with mild/moderate intellectual disabilities have sex and are more likely to have unsafe sex than their peers. Education and health services need to operate on the assumption that most young people with mild/moderate intellectual disabilities will have sex.

The association between employment status and health among British adults with and without intellectual impairments: cross-sectional analyses of a cohort study.

BACKGROUND: There exists a well established link between employment status and health, with unemployment being associated with poorer health. Much less is known about the association between economic inactivity and health, especially among people with disabilities. Our aim is to determine whether the association between employment status and health is similar for adults with and adults without intellectual impairment. METHODS: Using nationally representative data from the 1970 British Cohort Study, we undertook a series of cross sectional analyses of the association between employment status and health (self-reported general health, mental health) among British adults with and without intellectual impairments at ages 26, 30, 34, 38 and 42. RESULTS: People with intellectual disability and borderline intellectual functioning had markedly lower employment rates and poorer health than other participants at all waves of data collection. When compared with participants in full-time employment the prevalence of poorer self rated health and mental health was higher among participants with and without intellectual impairment who were in either part-time employment or were economically inactive at all ages. When compared with participants in employment the prevalence of poorer self rated health and mental health was higher among participants with and without intellectual impairment who were in the economically inactive categories of unemployment, education/training and ill/disabled at all ages. Intellectual disability status appeared to moderate the strength of the relationship between economic activity and self-rated health and, to a much lesser extent, the relationship between economic activity and mental health. In all instances the moderation indicated a stronger association among participants without intellectual impairment. CONCLUSIONS: The results provide substantive evidence to suggest that the nature of the well-established association between employment and better health is similar for British adults with and without intellectual impairments. The results do, however, indicate that the magnitude of the effect involved differed. Further research is needed to identify mechanisms that may underlie this difference.

The association between non-standard employment, job insecurity and health among British adults with and without intellectual impairments: Cohort study.

We sought to investigate the association between employment conditions and health among working age British adults with and without intellectual impairments. Using data from the 1970 British Cohort Study, we undertook a series of cross sectional analyses of the association between employment conditions and health (self-reported general health, mental health) among British adults with and without intellectual impairments at ages 30, 34 and 42. Our results indicated that: (1) British adults with intellectual impairments were more likely than their peers to be exposed to non-standard employment conditions and experience job insecurity; (2) in both groups exposure was typically associated with poorer health; (3) British adults with intellectual impairments in non-standard employment conditions were more likely than their peers to transition to economic inactivity; (4) among both groups, transitioning into employment was associated with positive health status and transitioning out of employment was associated with poorer health status. British adults with intellectual impairments are significantly more likely than their peers to be exposed to non-standard and more precarious working conditions. The association between employment conditions and health was similar for British adults with and without intellectual impairments. As such, the study found no evidence to suggest that research on causal pathways between employment and health derived from studies of the general population should not generalize to the population of people with intellectual impairments.

Self-Reported Participation in Sport/Exercise Among Adolescents and Young Adults With and Without Mild to Moderate Intellectual Disability.

BACKGROUND: Physical inactivity is a leading risk factor for mortality. Adults with intellectual disability are extremely inactive, but less is known about physical activity levels in children and youth with intellectual disability. This paper examines the participation by adolescents and young adults with and without mild to moderate intellectual disability in sport/exercise. METHODS: Secondary analysis was undertaken of Next Steps, an annual panel study that followed a cohort from early adolescence into adulthood. Participants with mild to moderate intellectual disability were identified through data linkage with educational records. RESULTS: Sport/exercise participation rates were consistently lower for adolescents and young people with mild to moderate intellectual disability than for their peers without intellectual disability. Matching participants on between-group differences in exposure to extraneous risk factors did not impact on these between-group differences in participation in sport/exercise. CONCLUSION: The results support limited existing evidence regarding the low level of participation of children and young people with intellectual disability in sport/exercise compared with their peers. Future work on promoting sport/exercise and physical activity in children and young people with intellectual disability may play a role in helping to reduce the health inequalities experienced by people with intellectual disability.

Constipation management in people with intellectual disability: A systematic review.

BACKGROUND: Constipation can lead to serious health issues and death. This systematic review summarizes international research pertaining to the management of constipation in people with intellectual disability. METHOD: Studies published from 1990 to 2017 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross-citations. Studies were reviewed narratively in relation to identified themes. RESULTS: Eighteen studies were reviewed in relation to three themes: laxative receipt; interventions (dietary fibre, abdominal massage and macrogol); and staff issues (knowledge and training). Laxative polypharmacy was common. Studies report positive results for dietary fibre and abdominal massage although study quality was limited. CONCLUSION: The main management response to constipation in people with intellectual disability is laxative use despite limited effectiveness. An improved evidence base is required to support the suggestion that an individualized, integrated bowel management programme may reduce constipation and associated health conditions in people with intellectual disability.

The mental health of adolescents with and without mild/moderate intellectual disabilities in England: Secondary analysis of a longitudinal cohort study.

BACKGROUND: Children with mild/moderate intellectual disabilities are at greater risk for mental health problems, with socio-economic factors and adversity partly accounting for this. Fewer data are available for adolescents. METHODS: Secondary analysis was undertaken of the Next Steps annual panel study following a cohort through adolescence into adulthood containing self-report mental health data up to age 16/17. Participants with mild/moderate intellectual disabilities were identified through data linkage with educational records. RESULTS: Adolescents with mild/moderate intellectual disabilities were more likely than non-disabled peers to experience socio-economic disadvantage and bullying. Incidence rates of mental health problems were generally not significantly different between adolescents with and without intellectual disabilities. CONCLUSIONS: These findings are consistent with higher rates of persistent mental health problems beginning earlier among children with intellectual disabilities. Greater attention needs to be paid to the timecourse of mental health problems, and the impact of socio-economic factors, family and peers on mental health.

Postural care for people with intellectual disabilities and severely impaired motor function: A scoping review.

BACKGROUND: Poor postural care can have severe and life-threatening complications. This scoping review aims to map and summarize existing evidence regarding postural care for people with intellectual disabilities and severely impaired motor function. METHOD: Studies were identified via electronic database searches (MEDLINE, CINAHL, PsycINFO and Web of Science) covering January 1990 to March 2016, and email requests to researcher networks. Results were collated via descriptive numerical summary of studies and thematic analysis. RESULTS: Twenty-three studies were identified and summarized narratively in relation to three themes: characteristics and prevalence, interventions and service related issues. The evidence base is small with significant gaps. Lack of evidence for night-time positioning equipment and 24-hr postural care needs to be addressed urgently. CONCLUSION: Future research should be clearly directed towards ascertaining how best postural care interventions can be employed to help improve the health and quality of life of people with intellectual disabilities.

People with intellectual disabilities and dysphagia.

PURPOSE: Dysphagia (difficulties in eating, drinking or swallowing) is associated with serious health complications and psychosocial sequelae. This review aims to summarise the state of the evidence regarding dysphagia in people with intellectual disabilities (excluding prevalence), identify gaps in the evidence base and highlight future research priorities. METHOD: Studies published from 1 January 1990 to 19 July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests and cross citations. Studies were reviewed narratively in relation to identified themes. RESULTS: A total of 35 studies were included in the review. Themes identified were as follows: health conditions associated with dysphagia; mortality; health service use; practice and knowledge in supporting people with intellectual disabilities and dysphagia; intervention effectiveness and quality of life. Dysphagia is associated with respiratory infections and choking and may be under-recognised. Silent aspiration is common and may go unnoticed. Management practices exist, but there are few intervention studies and no randomised controlled trials (RCTs), and hence, the effectiveness of these is currently unclear. CONCLUSION: Dysphagia is a key concern in relation to people with intellectual disabilities. There is urgent need for research on the management of dysphagia in people with intellectual disabilities, including mealtime support offered, positioning, dietary modification and impact on wellbeing. Implications for Rehabilitation Dysphagia is common in people with intellectual disabilities, associated with serious health risks and may be under-recognised. Caregivers of people with intellectual disabilities should be educated about dysphagia. There is an urgent need for research on improving the management of dysphagia in people with intellectual disabilities. Improved recognition and management of dysphagia may reduce the occurrence of associated health conditions and reduce hospital admissions and premature death in people with intellectual disabilities.

Prevalence of Dysphagia in People With Intellectual Disability: A Systematic Review.

Dysphagia (feeding and swallowing disorder) is associated with serious health complications and psychosocial sequelae. This review summarizes international research relating to the prevalence of dysphagia in people with intellectual disability. Studies published from 1990 to July 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests, and cross-citations. Twenty studies were identified. Dysphagia in people with intellectual disability appears to be associated with more severe levels of intellectual disability, comorbid cerebral palsy, and motor impairments. However, further research with representative samples of people with intellectual disability using adequate methods of assessment are required in order to provide more precise prevalence estimates and clarify factors that may be associated with dysphagia in this population.

Service Responses to People with Intellectual Disabilities and Epilepsy: A Systematic Review.

BACKGROUND: Epilepsy is highly prevalent in people with intellectual disabilities and is associated with increased mortality and high healthcare usage. This systematic review summarizes research on service responses to people with intellectual disabilities and epilepsy. METHOD: Studies published from 1990 were identified via electronic searches using Medline, Cinahl, PsycINFO and Web of Science, email requests to researcher networks, and cross-citations. Information extracted from studies was reviewed narratively in relation to identified themes. RESULTS: Thirty-five studies met the inclusion criteria. Overall study quality was low, with no RCTs or similarly robust intervention study designs. Access to specialists was inconsistent. The importance of proxies and the need for education regarding epilepsy for staff, carers and people with intellectual disabilities were highlighted. CONCLUSION: There are no methodologically robust studies on service-related interventions for people with intellectual disabilities and epilepsy. Further research on improving service delivery is required to substantiate findings reported here.

The Mental Health of British Adults with Intellectual Impairments Living in General Households.

BACKGROUND: People with intellectual disability or borderline intellectual functioning may have poorer mental health than their peers. The present authors sought to (i) estimate the risk of poorer mental health among British adults with and without intellectual impairments and (ii) estimate the extent to which any between-group differences in mental health may reflect between-group differences in rates of exposure to common social determinants of poorer health. MATERIALS AND METHODS: The present authors undertook secondary analysis of confidentialized unit records collected in Wave 3 of Understanding Society. RESULTS: British adults with intellectual impairments living in general households are at significantly increased risk of potential mental health problems than their non-disabled peers (e.g. GHQ Caseness OR = 1.77, 95% CI (1.25-2.52), P < 0.001). Adjusting for between-group differences in age, gender and indicators of socio-economic position eliminated this increased risk [GHQ Caseness adjusted OR = 1.06, 95% CI (0.73-1.52), n.s]. CONCLUSIONS: Our analyses are consistent with the hypothesis that the increased risk of poor mental health among people with intellectual impairments may be attributable to their poorer living conditions rather than their intellectual impairments per se. Greater attention should be given to understanding and addressing the impact of exposure to common social determinants of mental health among marginalized or vulnerable groups.

Obesity in British children with and without intellectual disability: cohort study.

BACKGROUND: Reducing the prevalence of and inequities in the distribution of child obesity will require developing interventions that are sensitive to the situation of 'high risk' groups of children. Children with intellectual disability appear to be one such group. We aimed to estimate the prevalence of obesity in children with and without intellectual disability in a longitudinal representative sample of British children and identify risk factors associated with obesity at age 11. METHODS: Information was collected on a nationally representative sample of over 18,000 at ages 9 months, 3, 5, 7 and 11 years. We used UK 1990 gender-specific growth reference charts and the LMS Growth programme to identify age and gender-specific overweight and obesity BMI thresholds for each child at ages 5, 7 and 11 years. RESULTS: Children with intellectual disabilities were significantly more likely than other children to be obese at ages five (OR = 1.32[1.03-1.68]), seven (OR = 1.39[1.05-1.83]) and eleven (OR = 1.68[1.39-2.03]). At ages five and seven increased risk of obesity among children with intellectual disabilities was only apparent among boys. Among children with intellectual disability risk of obesity at age eleven was associated with persistent maternal obesity, maternal education, child ethnicity and being bullied at age five. CONCLUSIONS: Children with intellectual disability are a high-risk group for the development of obesity, accounting for 5-6 % of all obese children. Interventions to reduce the prevalence and inequities in the distribution of child obesity will need to take account of the specific situation of this group of children.

The physical health of British adults with intellectual disability: cross sectional study.

BACKGROUND: Adults with intellectual disability have poorer health than their non-disabled peers. However, little is known about the health of the 'hidden majority' of adults with primarily mild intellectual disability who do not use intellectual disability services. The aims of the present study were: to estimate the physical health status of a population-based sample of British adults with and without mild intellectual disability while controlling for any potentially confounding effects resulting from between-group differences in gender, age, socio-economic disadvantage and neighborhood social capital. METHODS: Secondary analysis of data from Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens. We identified 299 participants aged 16-49 (1.2 % of the unweighted age-restricted sample) as having intellectual disability, and 22,927 as not having intellectual disability. Multivariate logistic regression was used to investigate between group differences adjusting for potential confounding personal characteristics (e.g., gender). RESULTS: Unadjusted comparisons indicated that British adults with intellectual disability have markedly poorer health than their non-disabled peers on the majority of indicators investigated including self-rated health, multiple morbidity, arthritis, cancer, diabetes, obesity, measured grip strength, measured lung function and polypharmacy. Adjusting for between-group differences in age and gender had a marginal impact on these estimates. Further adjusting for between-group differences in socio-economic disadvantage and neighborhood quality had a more marked impact on estimates with the number of statistically significant differences reducing from 13 to 8 and statistically significant attenuation of odds on three indicators (self-rated health, SF-12 physical component and multiple morbidity). CONCLUSIONS: The 'hidden majority' of adults with primarily mild intellectual disability who do not use intellectual disability services have significantly poorer health than their non-disabled peers. This may, in part, reflect their increased risk of exposure to well established 'social determinants' of poorer health.

Mortality in people with intellectual disabilities and epilepsy: A systematic review.

PURPOSE: Epilepsy is highly prevalent in people with intellectual disabilities and mortality is increased in people with epilepsy generally. This review summarises research on the comparative risk of mortality in people with intellectual disabilities and epilepsy compared to the general population, people with intellectual disabilities without epilepsy, and people with epilepsy without intellectual disabilities. METHOD: Studies were identified via electronic searches using Medline, Cinahl and PsycINFO and cross-citations. Information extracted from studies was tabulated and reviewed narratively. RESULTS: Sixteen studies met the inclusion criteria. Epilepsy was associated with increased mortality in people with intellectual disabilities in most studies, particularly in those experiencing recent seizures. Further research is needed to substantiate some of the reported findings. CONCLUSION: Services must be equipped with the skills and information needed to manage this condition in order to minimise the risk of death in people with intellectual disabilities and epilepsy.

Prevalence of epilepsy among people with intellectual disabilities: A systematic review.

PURPOSE: Epilepsy is more common in people with intellectual disabilities than in the general population. However, reported prevalence rates vary widely between studies. This systematic review aimed to provide a summary of prevalence studies and estimates of prevalence based on meta-analyses. METHOD: Studies were identified via electronic searches using Medline, Cinahl and PsycINFO and cross-citations. Information extracted from studies was tabulated. Prevalence rate estimates were pooled using random effects meta-analyses and subgroup analyses were conducted. RESULTS: A total of 48 studies were included in the tabulation and 46 studies were included in meta-analyses. In general samples of people with intellectual disabilities, the pooled estimate from 38 studies was 22.2% (95% CI 19.6-25.1). Prevalence increased with increasing level of intellectual disability. For samples of people with Down syndrome, the pooled estimate from data in 13 studies was 12.4% (95% CI 9.1-16.7), decreasing to 10.3% (95% CI 8.4-12.6) following removal of two studies focusing on older people. Prevalence increased with age in people with Down syndrome and was particularly prevalent in those with Alzheimer's/dementia. CONCLUSION: Epilepsy is highly prevalent in people with intellectual disabilities. Services must be equipped with the skills and information needed to manage this condition.

Systematic Reviews of the Health or Health care of People with Intellectual Disabilities: A Systematic Review to Identify Gaps in the Evidence Base.

BACKGROUND: Systematic reviews are important in evaluating evidence concerning the health of people with intellectual disabilities. This study conducts a systematic review to identify strengths and gaps in this evidence. METHOD: Electronic literature searches and email requests identified systematic reviews published in English from 2008 to 2013 on the health or health care of people with intellectual disabilities. Reviews were categorized using ICD-10 chapter headings and information extracted regarding methods, number of studies reviewed and findings. RESULTS: Ninety-four reviews were identified: 52 related to ICD-10 Chapter V: Mental or behavioural disorders, 28 to Chapter XXI: Factors influencing health status and contact with services, and 14 related to other chapters or encompassed multiple chapters. Nine reviews were 'empty'. No reviews were found for many ICD-10 chapter headings. CONCLUSIONS: Systematic reviews are heavily weighted towards mental health, with little coverage of several areas important to the health and mortality of people with intellectual disabilities.

The Impact of the Birth of a Child with Intellectual Disabilities on Pre-Existing Parental Christian Faith from the Perspective of Parents Who Have Parented Their Child to Adulthood.

BACKGROUND: Faith in the lives of UK families with an adult with intellectual disabilities is an under-researched area with little existing literature. Research in the United States with Christian parents suggests that they draw on their faith for coping (Rogers-Dulan 1998) and for understanding (Skinner et al. 1999). METHODS: In this study, grounded theory methodology has been used to examine the impact on pre-existing parental faith of the birth of a child with intellectual disabilities from the perspective of parents who have parented their children to adulthood. Seventeen parents or couples took part in semistructured qualitative interviews about their faith. RESULTS: The majority of parents after their child were diagnosed with intellectual disabilities went through a period of flux when they questioned the role of God in the disability. CONCLUSIONS: The positive or negative connotations of the attempts at meaning-making did not impact on the eventual outcome for the parents. They eventually put such existential questions aside, accepted their child, and continued in their faith. The implications of the research for health professionals, church organizations and researchers are considered.