An exploration of support and service needs of families with young children with disabilities
Date
1999
Authors
Ellingsen, Kirsten Marie
Major Professor
Advisor
Peterson, Carla
Committee Member
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Abstract
This study presents findings from a series of focus groups conducted to explore the support and service needs of parents raising young children with disabilities in southeast Iowa. Data were gathered using a checklist of services used, three focus group discussions involving 21 parents of children (birth to five) with disabilities receiving early intervention services, and follow up interviews. The topics explored in the focus groups consisted of family perspectives regarding challenges associated with both raising a young child with special needs and attempting to access and utilize early intervention support services. Content analyses were performed on the data from the focus groups and three follow up interviews. The results were used to construct tables of need and concern categories and include verbatim quotes from participants.
The data collected revealed that parents are experiencing a variety of difficulties finding out about, accessing, and utilizing available early intervention services. The parent participants identified several umnet needs and concerns regarding caring for their young child and participating in early intervention services. Needs experienced by parents included wanting more types and amount of services, information, emotional support, and family centered delivery. Parents expressed these needs by identifying potential resources or modifications of existing services. Participants also discussed a range of concerns in terms of areas causing frustration or difficulty. Examples of concern categories discussed include the following: time demands, emotional strains, lack of service coordination, problems with individual providers, agency policy, uncertainty about the future, accessing services, financial strain, and understanding the early intervention system.
In this study parents were asked to provide suggestions on ways to improve the effectiveness of local early intervention service delivery. Generally, parents articulated many specific suggestions and also shared personal coping strategies. The findings are discussed through a framework that outlines multiple contextual levels of parent perceived barriers to accessing desired resources and meeting family needs. The study concludes with implications for improvements at several levels in the early intervention system.
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thesis