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

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.

KEYWORDS:

• Child
• intellectual disability
• need assessment
• self-efficacy

Acknowledgements

We would like to express our sincere appreciation to the parents who participated in the study, as well as to our colleagues who assisted with data collection.

Disclosure statement

No potential conflict of interest was reported by the authors.

Notes on contributors

Karina Huus is associated professor at Department of Nursing, School of Health and Welfare, Jönköping University, Sweden. Her research interest is about children with long-term health conditions and children with disabilities. She is also a senior lecturer for Pediatric Nursing.

Lena M. Olsson is a social worker and PhD student at the research school at School of Health and Welfare, Jönköping University, Sweden. Her research interest is about children with disabilities and service utilization among children with mild intellectual disabilities and their families. She is employed as a research and development leader in Region Jönköping County.

Elisabeth Elgmark Andersson is an occupational therapist at department of Rehabilitation at School of Health and Welfare, Jönköping University, Sweden. She has two main research areas: Reduced activity and participation in daily life because of cognitive disabilities and ergonomics. She is involved in a research projects about 'Children with mild intellectual disabilities and their participation in daily life'.

Mats Granlund is a Professor at department Behavioral and social Work at School of Health and Welfare at Jönköping University, Sweden. He is the leader of the research group CHILD at Jönköping University. His research focuses on every-day functioning in children and young people in need of special support and their immediate environments.

Lilly Augustine is an associated professor in social work at Department of Human Sciences, CYHiSCO, Kristianstad University, Kristianstad, Sweden. Her research focus are related to participation in everyday life for children with and without disabilities, classifying participation using the ICF (International classification of functioning, disability and health). Participation is related to health and functions as a protective factor for the individual.

ORCID

Karina Huus http://orcid.org/0000-0003-4599-155X

Mats Granlund http://orcid.org/0000-0001-9597-039X

Additional information

Funding

This study was financially supported by The Public Health Agency of Sweden. There are no funding restrictions, and the authors have free access to publication.