To describe the benefits perceived by parents and professionals from their participation in parent advisory groups (PAGs).
Retrospective telephone survey.
Parent advisory groups were established in 4 community-based pediatric practices. Each group included parents of children with chronic health conditions, health care providers, and a Department of Public Health staff member.
The mothers and fathers of children with chronic health conditions completed a telephone survey. These parents also were enrolled in a broader intervention aimed at providing primary care for children with chronic conditions.
Groups met regularly in the pediatric office setting. Logistical arrangements and activities varied among the 4 groups.
Main Outcome Measures
Parents and professionals rated their perceptions of the PAGs based on a structured list of potential benefits.
Mothers viewed the PAGs as most beneficial in diminishing their isolation, helping them to understand family concerns, increasing their influence on the pediatric care provided to their children, and improving their knowledge of community resources. Professionals believed that the PAGs enhanced their awareness of common family needs, increased their skills at collaborating with families, and helped them to feel more effective. All professionals and most parents were interested in continuing their involvement in a PAG.
Parent advisory groups may benefit families and professionals who care for them by (1) fostering collaborative relationships and communication, (2) increasing a sense of social support among families, (3) increasing families' knowledge of community-based resources, and (4) increasing the families' sense of efficacy and involvement in the care of their own and others' children.