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Date of Award

5-2022

Document Type

Thesis - Campus Access Only

Degree Name

MS in Human Genetics

First Advisor

Lindsey Alico Ecker

Abstract

Background: Literature shows that foster children experience a high level of medical complexity, including mental, physical, and behavioral health challenges. Many foster children experience medical issues similar to those commonly evaluated in a pediatric genetics clinic. To date, no published research has explored foster care professionals’ perceptions of the utility of pediatric genetic medicine for the children in their care. This qualitative research study investigates the thoughts and experiences of 12 foster care professionals with regard to referring foster children to be seen in a genetics clinic.

Methods: This study utilized a semi-structured interview to explore the research topic. The interview questions cover 12 central topics within the umbrella of 3 broader research questions. Twelve individuals, from 10 foster care agencies or Departments of Social Services (DSS) in New York State, participated in the study. Interviews were transcribed and coded for central themes using Dedoose software. Themes were then analyzed through memo writing and constructed into the final manuscript.

Results: This study establishes that many foster care professionals have limited knowledge of when and how a genetics consult could benefit a foster child. Yet these professionals showed willingness and readiness to learn about genetic medicine and refer foster children for genetic evaluation more frequently. Those with prior experience making genetics referrals provided insight as to how genetics professionals could best serve the foster community. These recommendations included: getting to know the family dynamics before the appointment, involving the biological family in education and consent, and informing the children’s multiple caregivers about the implications of genetic findings.

Conclusion: This study explored the current relationship between the foster care community and pediatric genetic medicine. It outlines the perceptions of child welfare professionals with and without experience collaborating with pediatric genetics in the management of foster cases. This project lays the groundwork for future research opportunities, including exploring these same principles outside of New York State, or experimenting with new approaches for outreach to the foster community. Genetic counselors have the opportunity to learn about the foster care system and foster children’s unique needs in the genetics clinic– to join the “village” of individuals supporting foster children through one of the most challenging phases of their lives.

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