Narrative Experiences of Fathers of Children with Down syndrome

Author

Corey RoseFollow

Date of Award

Spring 3-19-2021

Document Type

Dissertation

Degree Name

PHD - Doctor of Philosophy

Department

Education

First Advisor

Robin Roth

Second Advisor

Janet Sauer

Third Advisor

Tonette Rocco

Abstract

This dissertation explores the narrative experiences of fathers raising children born with Down syndrome. The study joins a recent stratum of research on parents of children with Down syndrome which is grounded in critical disability theory, adheres to a social model of disabilities, and adopts narrative methodology, but which thus far has not investigated fathers’ experiences. 22 fathers, recruited by means of snowball sampling, participated in a two-question, semi-structured interview with a follow-up conversation. Findings from question one indicated that, in the initial moment of diagnosis, fathers experienced adverse encounters with medical personnel, intense negative emotions about the diagnosis, distressing episodes of medical complexity in their children, and fruitless and frustrating trials of information-gathering. Findings from question two revealed that fathers, once settled into their lives raising their children with Down syndrome, constructed sound information worlds reinforced by social support and more judicious information-gathering, and became more adept at managing their children’s medical complexities. Findings also revealed that fathers experienced changes to their roles, responsibilities, and relationships within their families, but were happy with their lives and proud of their children. Fathers reported that the source of their stress was often attributable to institutional ableism and misunderstandings by others about their lives and about raising children with Down syndrome. The analysis and conclusion sections of this dissertation suggest that a dominant cultural narrative about Down syndrome, which suggests that people with Down syndrome are unwanted and deleterious to their families and society, propagates such institutional ableism and misunderstandings. A final and notable finding from this study is that many participants experienced transformations in themselves and worldviews, suggesting that their lives were actually made better by raising their children with Down syndrome.

Creative Commons License

This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.

Language

English

Number of Pages

211

Embargo Period

4-6-2021

Recommended Citation

Rose, Corey, "Narrative Experiences of Fathers of Children with Down syndrome" (2021). Educational Studies Dissertations. 178.
https://digitalcommons.lesley.edu/education_dissertations/178