Parents as Information Intermediaries Between Primary Care and Specialty Physicians

Abstract

OBJECTIVE. In this study we assessed the views of parents of children referred to specialty care and the views of the children's primary care and specialty physicians about parents' roles as information intermediaries. METHODS. We enrolled 179 patients who were newly referred from primary care pediatricians in 22 practices to 15 pediatric subspecialists in 5 specialties in a study of primary care pediatrician-specialist communication. Parents, primary care pediatricians, and specialists completed questionnaires by mail or telephone at the first visit and 6 months later. Questions included perceived responsibilities of parents as information conduits between primary care pediatricians and specialists. Opinions of parents, primary care pediatricians, and specialists about parents' roles were compared for the sample as a whole, as well as for individual cases. Agreement between parents and providers was assessed. Demographic and clinical determinants of parents reporting themselves as “comfortable with” or “acting” as primary intermediaries were assessed using logistic regression. RESULTS. More parents (44%) than primary care physicians (30%) felt comfortable with parents acting as primary communicators between their children's physicians; 31% of parents who reported that they were the primary communicators felt uncomfortable in that role, and there was no agreement between parents and physicians about the role of parents in individual cases. Although no demographic characteristics of children or parents were associated with parent comfort as the primary communicator, parents of children who saw the same specialist more than once during the 6-month period felt more comfortable in this role. The presence of a chronic condition was not associated with parent comfort. CONCLUSIONS. Although parents report more comfort with their own ability as information intermediaries than do their children's physicians, the role in which they feel comfortable is highly variable. Physicians should discuss with parents the roles they feel comfortable in assuming when specialty referrals are initiated.