Support  as usual in local authority services for families of children with intellectual disabilities

<ns3:p>Background Families of children with intellectual disabilities often experience increased adversity and inequalities. Despite this, parent-reported data suggest that these families experience significant barriers in accessing appropriate supports. Less research has characterised what service providers offer to families. Understanding usual support for these families is important when considering comparators in evaluation research. The purpose of the current study was to describe support as usual for families of children with intellectual disabilities as reported by professionals and service providers. Methods Data on supports available to parents, siblings, and young carers, were extracted from the Local Offer websites of 100 randomly selected Local Authorities in England. Survey data were also collected from 66 professionals, either working in UK Local Authority services and/or services commissioned by Local Authorities, about what programmes and/or interventions are currently offered to parents of children with intellectual disabilities. Data were analysed and summarised using content analysis and descriptive statistics. Results A wide range of support programmes and/or interventions were described as being available to parents of children with intellectual disabilities. Most supports available were primarily designed for parents of non-disabled children or parents of children generally with special educational needs and disabilities. Data extracted from Local Offer websites led to the identification of six broad categories of programmes for parents; relatively few Local Authorities provided supports available for siblings or young carers. Conclusion Our findings offer researchers and professionals (e.g., practitioners, commissioners) insights into usual support offered by Local Authorities to families of children with intellectual disabilities. Future research may draw upon these findings when designing evaluations of health and social care interventions in the UK. Additional research is also needed in terms of the relationship between what might be on offer for families in theory and what they are actually able to access.</ns3:p>

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Publication Details

Journal
NIHR Open Research
Published
2025-05-07
DOI
https://doi.org/10.3310/nihropenres.13934.1
Citations
3
Primary Topic
Family and Disability Support Research
Type
article
Field-Weighted Citation Impact
6.92

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article

Support  as usual in local authority services for families of children with intellectual disabilities

Nicola McMeekin, Richard P. Hastings, Joanna Griffin, Kylie M. Gray et al.
3 citations
NIHR Open Research
Family and Disability Support Research
6.92
article

Support  as usual in local authority services for families of children with intellectual disabilities

Nicola McMeekin, Richard P. Hastings, Joanna Griffin, Kylie M. Gray, Amanda Allard, Jeanne Wolstencroft, Clare Kassa, Elizabeth Randell, Janet Carr, Daniel Sutherland, Paul Andrew Thompson, Elinor Coulman, Emma L. Taylor, David H. Russell, Bronwen Willoughby-Richards
article en
3 citations

Abstract

<ns3:p>Background Families of children with intellectual disabilities often experience increased adversity and inequalities. Despite this, parent-reported data suggest that these families experience significant barriers in accessing appropriate supports. Less research has characterised what service providers offer to families. Understanding usual support for these families is important when considering comparators in evaluation research. The purpose of the current study was to describe support as usual for families of children with intellectual disabilities as reported by professionals and service providers. Methods Data on supports available to parents, siblings, and young carers, were extracted from the Local Offer websites of 100 randomly selected Local Authorities in England. Survey data were also collected from 66 professionals, either working in UK Local Authority services and/or services commissioned by Local Authorities, about what programmes and/or interventions are currently offered to parents of children with intellectual disabilities. Data were analysed and summarised using content analysis and descriptive statistics. Results A wide range of support programmes and/or interventions were described as being available to parents of children with intellectual disabilities. Most supports available were primarily designed for parents of non-disabled children or parents of children generally with special educational needs and disabilities. Data extracted from Local Offer websites led to the identification of six broad categories of programmes for parents; relatively few Local Authorities provided supports available for siblings or young carers. Conclusion Our findings offer researchers and professionals (e.g., practitioners, commissioners) insights into usual support offered by Local Authorities to families of children with intellectual disabilities. Future research may draw upon these findings when designing evaluations of health and social care interventions in the UK. Additional research is also needed in terms of the relationship between what might be on offer for families in theory and what they are actually able to access.</ns3:p>

NIHR Open ResearchVol. 5
Great Ormond Street Hospital (GB), University of Warwick (GB), Scope Group (United States) (US), Children's Council (US), Monash Health (AU), University College London (GB), Monash University (AU), University of Glasgow (GB), Cardiff University (GB), University of Birmingham (GB), Cardiff Metropolitan University (GB), University of Wales (GB)
National Institute for Health and Care Research, Department of Health and Social Care, Health Technology Assessment Programme
Openalex Percentile: Top 4%
Family and Disability Support Research
6.92
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