Perceived needs among parents of children with a mild intellectual disability in Sweden

Karina Huus,Mats Granlund,Lilly Augustine,Elisabeth Elgmark Andersson,Lena M Olsson

doi:10.1080/15017419.2016.1167773

Abstract

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.

Highlights

The families of children with a mild intellectual disability (MID) utilize social services relatively infrequently (Olsson et al 2015)
Is there a difference in perceived support needs between families of children diagnosed with an MID alone and families of children diagnosed with an MID and one or more additional disorders?
The sample consisted of the parents of 38 children enrolled in compulsory schools for pupils with an ID, 87% of whom were estimated by their parents to have an MID

Summary

Introduction

The families of children with a mild intellectual disability (MID) utilize social services relatively infrequently (Olsson et al 2015). A study of how parents of Swedish children with an MID utilize social services revealed that families with children enrolled in self-contained classes were 13 times more likely to utilize disability-related social services (Olsson et al 2015) This indicates that the way in which services are organized and linked affects service utilization. The authors argued that parents who enrol their children in self-contained classes are more likely to be exposed to information about available services through meetings with other parents in the same situation and by knowledgeable teachers compared with parents whose children were integrated into mainstream classes This result indicates that professionals working to provide support to these parents must interact with parents in a manner that optimizes the parent’s access to information and perceived control over the available services. Is there a difference in perceived support needs between families of children diagnosed with an MID alone and families of children diagnosed with an MID and one or more additional disorders?

Participants

Discussion

Limitations of the study

Conclusion

Findings

Notes on contributors