Author

Alicia Gomes

Date of Award

2010

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Crystal R. Hill-Chapman

Abstract

Previous literature has shown that stress can play a major role in family functioning and can be pronounced in families of children with special needs. The purpose of this study is to analyze potential stressors in families of children with special needs to determine whether a diagnosis for a child's medical conditions has any impact on these stressors. Diagnosed and undiagnosed participants were obtained from the National Down Syndrome Society (NDSS), the National Down Syndrome Congress (NDSC), and the Syndromes Without A Name (SWAN) online discussion boards. Participants were solicited with an e-mail providing a link to an online survey with questions assessing their child's diagnosis status, parent's perceived severity of their child's medical conditions, parental stress, reproductive decision-making, marital satisfaction, parental alliance, diagnosis values, demographics, and social support use. A volunteer qualitative interview was done to allow participants to elaborate on areas addressed in the survey. In all, there were 52 participants in the online survey and 15 participants for the volunteer interview. Parental stress values indicate that the undiagnosed population has a statistically significant higher amount of parental stress compared to the diagnosed population (t (39) = 2.282, p = .052). The parent's perception of the child's medical severity also significantly correlates with higher stress levels. It was found that social support significantly predicted parenting stress ( p = .002) and explained a statistically significant proportion of variance in parenting stress scores, p = .003. Overall, the results show that both groups found having a diagnosis had more benefits than not having a diagnosis. Ease in receiving therapies and prognosis were most commonly reported as benefits for having a diagnosis within both groups. There were no statistically significant correlations with reproductive decision-making, parental alliance, and marital satisfaction. The results of this study highlight the importance of identifying stressors in families of children with special needs.

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