Abstract
Recent technological advances in genetic science have allowed individuals and families to acquire information about genetic conditions never before available. To date, research has focused on understanding the genetic basis of disorders, reoccurrence risk, and decision making related to performing genetic testing. Yet, decision making about testing is only one circumstance in which parents use genetic information. Parents are called upon to make critical judgments on how and to whom the information is conveyed and when to seek or provide information. The purpose of this study is to explore the interplay of parents' beliefs and behaviors in order to identify information management styles used by families in which there is a child with a genetic condition. In addition, the role that health care professionals play in helping families manage genetic information is explored. Specific aims: 1) Identify family information management styles by a) describing the parents' knowledge, beliefs and behavioral strategies for interpreting and using genetic information; b) describing the family and health care context in which information management occurs; and c) further refining the styles using family context variables of life satisfaction, family functioning, and child functional status; 2) Identify factors that facilitate or impede the parents' ability to access, interpret, convey, and use information; 3) Describe health professionals' beliefs and strategies for helping parents use genetic information; and 4) Examine the linkages between the views and strategies of parents and health care professionals. Using a noncategorical approach, 75 to 100 families (N~ 182 parents) of a school-aged child with a genetic condition will comprise the sample. Parents will b invited to participate in a tape recorded semi-structured interview, and complete three structured instruments measuring life satisfaction, family functioning, and child's functional status. Twenty-seven health care professionals from clinics the child with a genetic condition attends will also be invited to be interviewed about their role in information management. Qualitative analysis of the interview data will focus on identifying major themes and overarching patterns (styles) of information management of parents and health care professionals. Cluster analysis will be used to refine the family information management styles. The results will inform professionals working with families, and contribute to the development of expert clinical judgment as a basis for addressing families' questions and concerns about a child's genetic condition.
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