Date of Award

1-1-2011

Document Type

Campus Access Thesis

Department

Genetic Counseling

First Advisor

Ferrante, Richard

Abstract

Understanding the needs of parents raising a child with an intellectual disability enables healthcare providers to better serve their patients. The purpose of this study was to identify the practical needs of fathers raising children with autism and fathers raising children with Down syndrome. A total of 139 fathers of children with autism and fathers of children with Down syndrome completed an online survey and their responses were analyzed to identify specific needs which arise when parenting a child with intellectual disabilities. Chi-square analysis was performed on quantitative data and compared the responses from fathers of children with autism and fathers of children with Down syndrome. Qualitative data were analyzed for themes and subthemes as they arose from participants' responses.

Fathers reported on the experience of receiving their child's diagnosis, the quality of information sources, and current experiences parenting their child. The results include a report of fathers' needs with respect to resources, parenting skills, family dynamics, personal qualities, and various categories of support. Participants provided advice to fathers of children receiving a diagnosis of intellectual disabilities and for healthcare providers who are interacting with these fathers. Fathers evaluated their experiences with pediatric genetic counselors specifically, and discussed helpful experiences and areas of improvement.

Findings of this study are discussed and compared to the limited body of research on fatherhood, including fathers of children with intellectual disabilities. The results of this study indicate that social support, including spousal support, are highly valued by fathers. Further discussion about characteristics of fathers included balancing conflicting daily responsibilities while having a long-term, outer-world perspective. Practice recommendations for healthcare professionals, including genetic counselors, are made based on the findings in this study. The information from this study raises awareness of the needs of those parenting individuals with intellectual disabilities and can serve as a foundation on which the needs of fathers of children with special needs can be further investigated.

Rights

© 2011, Emily Olivia Rosebrough

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