Needs of Grandparents of Preschool-Aged Children with ASD in Sweden

Rano Zakirova Engstrand,Lise Roll-Pettersson,Mara Westling Allodi,Tatja Hirvikoski

doi:10.1007/s10803-019-03946-w

Rano Zakirova Engstrand, Lise Roll-Pettersson + Show 2 more

Open Access

https://doi.org/10.1007/s10803-019-03946-w

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Abstract

Little is known about needs of grandparents of young children with autism in family and community settings. This study investigated perceived needs of grandparents of preschool-aged children diagnosed with ASD in the cultural context of Sweden. Participants were 120 grandparents of children enrolled into autism intervention programs provided by the public disability services in Stockholm. The Grandparents’ Needs Survey and the SDQ Impact supplement were used to collect data. Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents’ demographics and perceptions of needs; grandparents’ needs were predicted by their perceived burden. The findings provide insight into understanding of grandparents’ needs essential for planning and provision of quality family-centered early intervention services.

Highlights

Autism spectrum disorder (ASD) is a neurodevelopmental disorder entailing difficulties with social interaction, communication and stereotypical behaviors and restricted interests (American Psychiatric Association 2013)
Existing studies that examined views and perspectives of traditional grandparents of children with ASD have been mainly conducted in English-speaking countries
Of 119 grandparents, 9 (7.6%) reported having two grandchildren diagnosed with ASD

Summary

Introduction

Autism spectrum disorder (ASD) is a neurodevelopmental disorder entailing difficulties with social interaction, communication and stereotypical behaviors and restricted interests (American Psychiatric Association 2013). ASD is often associated with behavioral problems, eating and sleep disorders, depression and anxiety (Gillberg 2010). The impact of ASD on family well-being is multidimensional (Derguy et al 2015) and can adversely affect family quality of life (FQOL; Gardiner and Iarocci 2012; Tint and Weiss 2016). Grandparents’ Experiences and Needs when Having a Grandchild with ASD. Available research on grandparents of children with ASD is limited (Hastings 2008; Hillman et al 2016). Existing studies that examined views and perspectives of traditional grandparents of children with ASD have been mainly conducted in English-speaking countries.

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