Date of Award

2017

Document Type

Open Access Thesis

Department

Genetic Counseling

Sub-Department

School of Medicine

First Advisor

Richard Ferrante

Abstract

Many states within the foster care system have adopted a document referred to as the health passport, which provides a condensed summary of a child's health history. This passport is intended to remain with the child as he/she moves between placements to improve communication between foster parents, caseworkers, and medical professionals. This exploratory research study examines the foster care system's utility of a child's health passport and opportunities for improvement through an online survey of the pediatric genetic counselor population. First, counselor perspectives on serving foster children were gathered and summarized into themes. Major elements and/or obstacles of counseling the foster care population involved limited information and records, barriers to genetic testing, and psychosocial differences between caretakers. Second, counselors provided input regarding the inclusion of genetic information within the passport. Specifically, topics such as the counselor's interaction with the passport document, prioritization of information to be included, and recommendations for utilization of the passport were addressed. Of the 81 participants who completed the survey, only 11% had previous familiarity with the document, yet 83% expressed that it would be useful in their practice. Participants were asked to rank items in order of importance regarding inclusion in a health passport and the median value was assessed to

determine the order. "Maternal pregnancy history" was reported as the most important item (4.79), followed by "Birth history" (4.46), "Family history" (3.62), "Developmental history" (3.31), "Previous genetic testing" (3.21), and "Patient personal medical history" (1.56). The outcome of this study was to interpret genetic counselors' informational needs and explore how the health passport could address these needs and be incorporated in practice. These results could enhance genetic counselor effectiveness and improve continuity of care for these children.

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