Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Arts

Program

Education

Supervisor

Neil, Nicole M.

Abstract

The present study aims to better understand support needs among parents/caregivers of children with Down syndrome, and its relationship to parental stress and coping strategies. 122 parents and caregivers of children with Down syndrome of various age groups completed an online survey including demographics information, Family Needs Survey - Revised, Questionnaire on Resources and Stress – Friedrich Version, and the Family Crisis Oriented Personal Scales. Descriptive statistics characterize the sample and determine which items are important and met as needs. Relationship between the important unmet needs (IUN), coping and stress were explored using Pearson correlations across the three measures. The most important needs domains were Information and Community Services. Findings support our hypotheses that greater stress is correlated with IUN, and more effective coping strategies are correlated with less stress and less IUN. With greater understanding of these relationships, support programs and interventions could be designed to target specific needs.

Summary for Lay Audience

This study aims to better understand support needs in parents and caregivers of children with Down syndrome. Despite Down syndrome (DS) being the most prevalent chromosomal cause of intellectual disability, research including individuals with DS often groups the population with other etiologies of developmental or intellectual disabilities or considers the population a control group in studies of autism spectrum disorder. Individuals with DS have a unique profile of strengths and vulnerabilities, which means that parents will also present with unique needs and require supports to meet their own mental health concerns. For parents of children with DS, support received was the main factor that helped parents manage all types of stress. Furthermore, perceived helpfulness of informal support and coping patterns made independent contributions to predicting healthy adaptation, suggesting the importance of exploring coping strategies and support needs in order to yield healthy family adaptation.

Therefore, we conducted a needs assessment that would inform the development of a support group, which reflects the voices of the parents and caregivers. The purpose of my study is to better understand parental stress and coping strategies among parents and caregivers of children with DS, and how these factors may predict support needs. The study will contribute to the knowledge in the field of developmental disabilities, as no studies to date have examined the needs and the accessibility of services in the DS population, especially in Canada. Furthermore, knowledge translation of the outcome of this research will be distributed to support agencies and organizations for DS in Ontario.

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