The Impact of Short Breaks on Families with a Disabled Child: Report One of the Quantitative Phase

This document reports on a cross-sectional sample of families with a disabled child using short breaks in England; it describes the characteristics of children and families using short breaks, the nature and quantity of the short breaks they are using, their experiences of and satisfaction with short breaks and which factors are associated with a range of outcomes for family carers, disabled children and their siblings. This report uses both quantitative data derived from standardised questions and qualitative data from family members’ written responses to open-ended questions in the survey instruments

The impacts of short break provision on disabled children and families: an international literature review

For over 30 years, short breaks have been part of the landscape of support provision for families with a disabled child. Historically, the term ‘respite care’ has been used in much of the research literature concerning short breaks for families with a disabled child. However, ‘short breaks’ has become the preferred term, partly due to the negative connotations of family carers requiring ‘respite’ from their children, and partly because short breaks now encompass a much wider range of supports than out-of-home placement in specialist residential facilities (Cramer and Carlin, 2008). As such, the term ‘short breaks’ will be used throughout this review, with the exception of direct quotes from research studies where the term ‘respite’ is used by study participants or study authors

Perceptions of neighbourhood quality, social and civic participation and the self rated health of British adults with intellectual disability:cross sectional study

BACKGROUND: There is extensive evidence from research undertaken on general population samples that people who have more extensive and closer social networks and people who report feeling connected to their local community tend to have better health. However, relatively few studies have examined the relationship between the social connectedness of people with intellectual disabilities and their health. METHODS: Secondary analysis of data from Understanding Society, a new longitudinal study focusing on the life experiences of UK citizens. We identified 279 participants aged 16-49 (1.1% 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: British adults with intellectual disability had less favorable perceptions of important neighborhood characteristics and lower levels of social and civic participation than their non-disabled peers. Favorable perceptions of important neighborhood characteristics and higher levels of social and civic participation were associated with more positive self-rated health for adults with and without intellectual disability. For adults with intellectual disability this was particularly the case with regard to employment, feeling safe outside in the dark and being able to access services when needed. The between-group differences in perceptions of important neighborhood characteristics and levels of social and civic participation accounted for a significant proportion of the elevated risk for poorer self-rated health observed among adults with intellectual disability. CONCLUSIONS: This study provides evidence to suggest that the health inequalities experienced by people with intellectual disabilities may be partially attributable to their less favorable perceptions of important neighborhood characteristics and lower levels of social and civic participation

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 health checks for people with intellectual disabilities:an updated systematic review of evidence

Health checks for people with intellectual disabilities have been recommended as one component of international health policy responses to the poorer health of people with intellectual disabilities. This review updates a previously published review summarising evidence on the impact of health checks on the health and well-being of people with intellectual disabilities. Electronic literature searches and email contacts were used to identify literature relevant to the impact of health checks for people with intellectual disabilities published from 1989 to 2013. Forty-eight publications were identified, of which eight articles and two reports were newly identified and not included in the previous review. These involved checking the health of people with intellectual disabilities from a range of countries including a full range of people with intellectual disabilities. Health checks consistently led to detection of unmet health needs and targeted actions to address health needs. Health checks also had the potential to increase knowledge of the health needs of people with intellectual disabilities amongst health professionals and support staff, and to identify gaps in health services. Health checks are effective in identifying previously unrecognised health needs, including life threatening conditions. Future research should consider strategies for optimising the cost effectiveness or efficiency of health checks

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

Prevalence of constipation in people with intellectual disabilities:a systematic review

Background. Constipation can lead to serious health issues and death. This systematic review summarises international research pertaining to the prevalence of constipation in people with intellectual disability. Method. Studies published from 1990 to January 2016 were identified using Medline, Cinahl, PsycINFO, Web of Science, email requests, and cross-citations. Studies were reviewed narratively. Results. 31 studies were identified. Constipation rates of 50% or more were reported in 14 studies; 21 studies reported rates over 33%. Based on the most representative study, over 25% of people with intellectual disability received a repeat prescription for laxatives in one year, compared to 0.1% of people without intellectual disability. Constipation was more common in those with cerebral palsy and profound intellectual disability, and associated with immobility but not age. Conclusion. Constipation is a significant issue for people with intellectual disability across the life course and should be actively considered as a diagnosis in this population

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 five, seven and eleven 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