Children with mild intellectual disability and their families – needs for support, service utilisation and experiences of support

Abstract: This thesis focuses on service utilisation among children with mild ID and their families, their needs for support and their experiences of support.AimsThe overall aim of the thesis was to explore and describe service utilisation patterns among families of children with mild ID from a systems perspective.MethodsA cross-sectional, descriptive and comparative quantitative design was used to describe the extent of service utilisation among 84 children with mild ID and their families (paper I and II). The types and number of services utilised were investigated in relation to the child’s age, gender and school setting. Data concerning the services utilised were collected from the organisational records of social services and paediatric habilitation units. In paper III, a descriptive questionnaire design was used to describe the support needs of families of 38 children with mild ID. A confirmatory design was used to examine the relation between family needs for support and (a) parental self-efficacy and (b) parents’ control over services. A confirmatory design was also used to examine the relation between parents’ experiences of the helpfulness of the support and (a) parental self-efficacy and (b) parents’ control over services. In paper IV a longitudinal, comparative and confirmatory design was used to investigate whether social service utilisation patterns differ over time when children with mild ID in self-contained classes are compared with those integrated into mainstream classes (n=405).ResultsIn total, 60% of the families utilised paediatric habilitation services, and 40% of the families used disability-related services provided by social services. The most commonly utilised services were services concerned support outside of the home, such as respite care and services to improve children’s participation in society. Approximately 25% of the families utilised social problems-related services provided by social services. The most commonly utilised services concerned those to support parents in their parenting roles and financial assistance. In contrast to older children, younger children were more likely to utilise paediatric habilitation services. Older children utilised a higher number of disability-related service types provided by social services. Few differences were found between males and females. The majority of families did not utilise such services that are provided by social services. It was rare for families to use both disability-related services and those that address social problems during the same year.Commonly reported family needs concerned information about what services are available for their child, their child's impairment, how to respond to their child's behaviour and how to teach their child skills. Other common needs included access to parent support networks, to find suitable leisure activities for the child, and more alone time for parents. In contrast to families with mothers who did not participate in paid work, families with mothers who were employed expressed a lower requirement for support such as counselling, contact with other parents of children with impairments, more friends and more alone time for parents. Similar results werefound for families with mothers with higher levels of education. Parents with higher levels of perceived self-efficacy reported a lower need for information, as did also parents with higher levels of control over services. Parents with higher levels of control over services experienced the support as being more helpful.Children with mild ID who attended self-contained classes were more likely to utilise paediatric habilitation services than children integrated in mainstream classes. The same pattern was found for utilisation of disability-related services provided by social services. Integrated children who changed school setting to attend self-contained classes were more likely to begin to utilise disability-related services in comparison with those children who continued to be integrated. The former also had a higher likelihood of increasing the number of disability-related service types utilised.ConclusionsIn addition to disability-related problems, families of children with mild ID may also be at a higher risk of experiencing social problems when compared with the general population. Furthermore, very few families utilised both disability-related services and services addressing social problems. This implies that collaboration flaws exist between those professionals concerned with child welfare services and those concerned with disability-related services. A strong predictor of service utilisation was the type of school setting: children attending self-contained classes had a higher rate of service utilisation than those attending mainstream classes. This indicates that service systems outside of school are designed to collaborate with groups of pupils in special classes rather than individual children in mainstream classes. The strong need for information by families indicates that an ecological framework should be used to identify those factors that affect information availability and effectiveness. To increase parents’ perceived level of control over services, HSO professionals need to work in a capacity building manner with the explicit goal to enhance parental self-efficacy.