Date of Award

2015

Document Type

Open Access Thesis

Department

Genetic Counseling

Sub-Department

School of Medicine

First Advisor

Victoria Vincent

Abstract

Very little information is available regarding the experience and needs of families who create an adoption plan for their child with disability. The purpose of this study was to learn more about the experiences of birthparents who created an adoption plan after the diagnosis of Down syndrome so as to understand their needs during the process. Birthparents were invited to participate in the study through National Down Syndrome Adoption Network (NDSAN) by membership emails. Information about the study was made available on the organization’s website and social media pages. Potential participants also learned about the study from one of the co-authors of the study. Participant inclusion criteria included individuals who were 18 years of age and older, who had created an adoption plan for their baby with Down syndrome, and who were willing to participate in the telephone interview. Semi-structured telephone interviews were conducted with five mothers who had created adoption plans for their children with Down syndrome. Conventional content analysis methods were used for systematic coding and identification of emergent themes. All five participants were Caucasian, over 35 years of age, and all but one were married and had previous children. All except one chose to create an open adoption plan. The interviews focused on three major areas: (1) families’ reasons for creating an adoption plan, (2) informational and emotional needs of these families, and (3) messages to other birthparents and medical health professionals about special needs adoption. Participants reported various reasons for creating an adoption plan including unplanned pregnancy, being unprepared to raise a child with Down syndrome, and religious and personal beliefs about termination of pregnancy. Having support of their partners, gaining acceptance from others about their decision and talking to other birthparents who have gone through the same situation were the most significant emotional needs of these birthmothers. Finding information about adoption resources was one of the informational needs experienced. Not all birthmothers interviewed received information about the option of adoption from their genetic counselors or medical healthcare providers. The birthmothers also expressed concerns that people are unaware of the option of creating an adoption plan, and suggested that more exposure is necessary. Sharing results from this study with genetic counselors and other healthcare professionals may help future birthmothers approach this option with greater ease, and hopefully help healthcare professionals provide support and referrals to clients involved in special needs adoptions.

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Genetics Commons

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