Parents of children with rheumatic disease as peer counselors.

Abstract

A parent consultant program was established to promote active family involvement in the health care process and to provide parent-to-parent support, education, and training. Parents of children with rheumatic disease were hired by 7 pediatric rheumatology centers to serve as role models and advocates for other parents whose children attended the clinics. In the clinic, the parent consultants provided support, advocacy, and education regarding specific nonmedical issues. At the local level, they assisted parents in obtaining community-based services, such as individual educational plans at school, local physical therapy, or access to recreational resources. Program impact was evaluated by an anonymous, mail-response questionnaire sent to parents who met with a parent consultant during a clinic visit for their child. Surveys were sent within 6 months of the initial parent consultant meeting; 257 questionnaires were mailed, 33% were returned. The majority of respondents (87%) felt their interaction with the parent consultant was helpful. The general support received and the specific information and/or assistance received were found to be equally useful by respondents. The majority of respondents (98%) stated they would recommend that other parents meet with the parent consultant. Parents of children with rheumatic disease are effective peer counselors, providing general support and specific assistance to enhance family involvement in care.