Date of Award

Winter 12-28-2024

Document Type

Dissertation

Degree Name

PHD - Doctor of Philosophy

Department

Counseling Psychology

First Advisor

Sue Motulsky, Ed.D.

Second Advisor

Susan Gere, Ph.D.

Third Advisor

Amy Sousa, Ph.D.

Abstract

Maternal caregivers of children with developmental disabilities (DD) experience a significant burden of care and increased parenting stress, making social support crucial to family well-being. This qualitative study used a feminist, intersectional framework to examine how marginalized mothers of children with DD, who have been less extensively studied than majority mothers (Stober & Franzese, 2018), perceive and experience social support from extended family, friends and community members. It also examined how social supports impact the mother’s quality of life, understanding that the caregiver's well-being is a determining factor for the child's well-being. The study investigated, from mothers’ perspectives, what kind of social support contributes to resiliency, is adaptive, and is helpful as well as barriers to social support that disrupt the family system. The research sought to examine barriers in mothers’ social-relational ecology that further burden caregivers advocating for their child and to provide possible solutions. Eleven mothers of children with DD participated in semi-structured interviews, which were analyzed through Interpretive Phenomenological Analysis (IPA) (Smith & Nizza, 2022). All the mothers interviewed identified as marginalized in ways beyond their gender and the disability stigma associated with their children. These compounding marginalized statuses were mainly the mothers’ racial or ethnic identity, role as single parents, being immigrants, or having lower SES. Caregivers with marginalized identities may encounter additional challenges with oppressive systemic barriers and discrimination, as well as a lack of social support. Caregivers overwhelmingly reported experiencing isolation and stigma, which negatively impacts well-being (Smith & Grzywacz, 2014). Findings included barriers to social support, geographic relocation for better access to services, discriminatory experiences, and helpful social supports contributing to resilience. Abandonment from members within the mother’s social support circle, and mother’s distancing from key relationships as a protective factor, was a major finding. Clinical recommendations and a caregiver’s bill of rights are offered.

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial 4.0 License

Language

English

Number of Pages

295

Download

Share

COinS