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Children with mild intellectual disability and their families – needs for support, service utilisation and experiences of support
Jönköping University, School of Health and Welfare, HHJ. CHILD.
2016 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

This thesis focuses on service utilisation among children with mild ID and their families, their needs for support and their experiences of support.

Aims

The overall aim of the thesis was to explore and describe service utilisation patterns among families of children with mild ID from a systems perspective.

Methods

A 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).

Results

In 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.

Conclusions

In 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.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare , 2016. , 114 p.
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 67
Keyword [en]
Children, mild intellectual disability, service utilisation, social services, paediatric habilitation, education policy and practice, integration, inclusion, needs assessment, family needs
National Category
Occupational Therapy Pediatrics
Identifiers
URN: urn:nbn:se:hj:diva-29604ISBN: 978-91-85835-28-7 (print)OAI: oai:DiVA.org:hj-29604DiVA: diva2:910992
Public defence
2016-04-01, Forum Humanum, Hälsohögskolan, Jönköping, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2016-03-10 Created: 2016-03-10 Last updated: 2016-04-13Bibliographically approved
List of papers
1. Social service utilisation patterns among children with mild intellectual disability – differences between children integrated into mainstream classes and children in self-contained classes
Open this publication in new window or tab >>Social service utilisation patterns among children with mild intellectual disability – differences between children integrated into mainstream classes and children in self-contained classes
2015 (English)In: European Journal of Special Needs Education, ISSN 0885-6257, E-ISSN 1469-591X, Vol. 30, no 2, 220-236 p.Article in journal (Refereed) Published
Abstract [en]

Background. Children with a mild intellectual disability (ID) and their families often require social services; however, because of the characteristics of the formal service system, these families may be at risk of not receiving necessary services. The aim of this study was to obtain knowledge regarding the types and number of services that families receive from social services because of the child’s disability and because of social problems. Another aim was to acquire knowledge regarding the percentage of families receiving services and to evaluate the received services in relation to the child’s gender, school setting and age. Method. Utilisation of social services among 84 children with a mild ID and their families in two municipalities in Sweden was examined using existing social services records. Results. Approximately one-third of the families received services because of the child’s disability and one-fourth because of social problems. Children integrated into mainstream classes were significantly less likely to receive services from social services because of their disability than children in self-contained classes. The most commonly utilised services because of the child’s disability were companion service, short period of supervision for schoolchildren and special transportation services. The services most utilised because of social problems were help from a personal contact, a contact family for the child’s siblings and financial assistance for the child’s parents. Conclusions. Social services must engage in outreach activities, especially in schools, so that families having a child with mild ID are recognised and receive necessary services.

Keyword
children with mild intellectual disability, family needs, social service utilisation, education policy and practice
National Category
Social Sciences Interdisciplinary
Identifiers
urn:nbn:se:hj:diva-25525 (URN)10.1080/08856257.2014.986920 (DOI)000352608500006 ()2-s2.0-84926408900 (Scopus ID)
Available from: 2015-01-07 Created: 2015-01-07 Last updated: 2017-12-05Bibliographically approved
2. Habilitation service utilization patterns among children with mild intellectual disability
Open this publication in new window or tab >>Habilitation service utilization patterns among children with mild intellectual disability
2017 (English)In: Journal of Policy and Practice in Intellectual Disabilities, ISSN 1741-1122, E-ISSN 1741-1130, Vol. 14, no 3, 233-239 p.Article in journal (Refereed) Published
Abstract [en]

Background

There is a need for more knowledge about the utilization of habilitation services outside school among children with mild intellectual disability (ID). Specific aims. The aim of this study was to describe the patterns of habilitation service utilization among children with mild ID living in Sweden.

Method

A quantitative cross-sectional total population study was performed using data from service providers’ existing records.

Findings

The most common types of services utilized were those by physicians, counselors, and psychologists. Compared with children with mild ID who were in special classes, children with mild ID who were integrated into mainstream classes utilized significantly fewer types of services. Increasing age of the child was associated with a lower number of service types utilized. Children integrated into mainstream classes were significantly less likely to utilize habilitation services than children attending special classes. The likelihood of utilizing habilitation services decreased with age. Approximately two-thirds of the children utilized habilitation services.

Discussion

It is urgent that integration/inclusion in one organizational system, that is, school, does not result in exclusion in another system, such as pediatric habilitation services, which also aim to promote active participation in society. Pediatric habilitation professionals, teachers, and health units at schools need to interact in a manner so that children with mild ID, independent of type of school setting, have access to disability-related services outside school.

Place, publisher, year, edition, pages
John Wiley & Sons, 2017
Keyword
children; habilitation; mild intellectual disability; service utilization
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-28789 (URN)10.1111/jppi.12174 (DOI)000411722300007 ()2-s2.0-85029948793 (Scopus ID)
Note

Included in thesis in its submitted manuscript form with the title "Habilitation service utilization patterns among children with mild intellectual disability: The differences between children who are integrated into mainstream classes and children in self-contained classes".

Available from: 2015-12-28 Created: 2015-12-28 Last updated: 2017-11-08Bibliographically approved
3. Perceived needs among parents of children with a mild intellectual disability in Sweden
Open this publication in new window or tab >>Perceived needs among parents of children with a mild intellectual disability in Sweden
Show others...
2016 (English)In: Scandinavian Journal of Disability Research, ISSN 1501-7419, E-ISSN 1745-3011Article in journal (Refereed) Epub ahead of print
Abstract [en]

Parents of children with a mild intellectual disability experience more distress and require more support than other parents. The aim was to investigate the perceived family needs of parents of children with an MID and to investigate the relationship between parents’ perceived self-efficacy in their parental role and in collaborating with professionals as well as with their perceived needs for support. Interviews were based on questionnaires to the parents of 38 children. The results revealed that parents perceived need for information, respite, and venues in which to meet other parents in similar situations. The informational needs were related to parental self-efficacy and obtaining support. A lower need for information was related to higher perceived control over services. In conclusion, it appears that professionals need to work to strengthen parents’ ability to ask for support and to express the needs. Well-informed parents will develop stronger parental self-efficacy and perceived control over services.

Keyword
Child, intellectual disability, need assessment, self-efficacy
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:hj:diva-28791 (URN)10.1080/15017419.2016.1167773 (DOI)
Note

Included in doctoral thesis in its submitted manuscript form (2015).

Available from: 2015-12-28 Created: 2015-12-28 Last updated: 2017-12-01
4. Integration of pupils with mild intellectual disability in mainstream school settings - goog or bad for social service utilisation? A longitudinal study among children with mild intellectual disability in Sweden
Open this publication in new window or tab >>Integration of pupils with mild intellectual disability in mainstream school settings - goog or bad for social service utilisation? A longitudinal study among children with mild intellectual disability in Sweden
Show others...
(English)Manuscript (preprint) (Other academic)
National Category
Pediatrics
Identifiers
urn:nbn:se:hj:diva-29608 (URN)
Available from: 2016-03-10 Created: 2016-03-10 Last updated: 2016-04-13

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