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

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. (C) 2015 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved

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

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

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. (C) 2015 British Epilepsy Association. Published by Elsevier Ltd. All rights reserved