Visioning family-centered care in genetics: What parents and providers have to say

Abstract

The purpose of this multisite exploratory research study involving focus groups of consumers and service providers was to generate stakeholder input for a statewide strategic plan for genetic services in the southwestern region of the United States. This article describes the qualitative methods by which the data were collected and summarizes major themes in participants' perceptions about genetic services. It also describes processes related to obtaining genetic services and characteristics of an ideal service delivery system for children affected by genetic disorders and the families that care for them. Implications for practice and policy are also reviewed. © 2006 Springer Science+Business Media, LLC.