Background Families of children with intellectual disabilities often experience increased adversity. 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. This study aimed to describe support as usual, in terms of parenting, family, and sibling intervention support, for families of children with intellectual disabilities as reported by professionals and service providers to inform the design of future research trialling new parenting and sibling interventions, respectively. Methods Data on supports available to parents, siblings, and young carers, were extracted from the Local Offer websites of 100 randomly selected English Local Authorities. 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 or interventions are currently offered to parents of children with intellectual disabilities. Data were analysed using content analysis and descriptive statistics. Results A wide range of support programmes or interventions were described as being available to parents of children with intellectual disabilities, with most 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 for siblings or young carers. Conclusion Our findings offer researchers and professionals 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 needed to examine the relationship between what might be on offer for families in theory and what they are able to access.
Taylor et al. (Thu,) studied this question.