Developing Family-Centered Models of Genetic Services

Abstract

This article reports the findings of an exploratory, multi-method study conducted for a state health authority to examine stakeholder perceptions of existing genetic services and service ideals using survey and focus group methodologies. A web-based survey of medical providers and allied health professionals (N = 567) examined the knowledge needed by service providers to deliver competent genetic care. A second web-based survey of programs (N = 15) viewed as potential partners in the delivery of genetic services was conducted to explore the potential for interagency coordination, the family-centered nature of these services, existing training, and general agency ideals and values. Focus groups were also conducted with 4 groups of families and 3 groups of service providers to explore their perceptions of current and ideal services. The strategies yielded important information around service needs, resource issues, barriers to service, psychological issues, and education and information needs related to the delivery of genetic services. Implications for professional education, especially social work education, are also covered.

Key Words:

• Disability
• genetics
• family-centered
• training
• families