Objectives: To compare parents of children with special health care needs (CSHCN) with other parents to determine parents' expectations and priorities for discussing concerns related to a child's acute or chronic illness at well-child care visits, the association of unmet expectations and priorities with satisfaction, and whether discussing illness displaces prevention topics. Design: Written, self-administered survey of parents at well-child care visits. Setting: Two community-based pediatric practices in suburban southeast Michigan. Participants: Five hundred parents with children aged 6 months to 12 years. Main Exposure: Having a special health care need. Main Outcome Measures: Expectations and priorities for discussing illness-related topics (chronic and acute illnesses, medications, specialist referrals, and effects of health on life overall), actual discussion regarding illness and preventive topics, and satisfaction. Results: Compared with parents of children without chronic conditions, parents of CSHCN were more likely to expect to discuss their child's illness (81% vs 92%, respectively; P<.001); 79% of parents of CSHCNranked illness among their top 3 priorities (vs 53% of other parents [P<.001]). Parents ofCSHCNreported discussing a mean of 3.2 illness topics, as compared with a mean of 2.2 illness topics for other parents (P<.001). Having more than 1 unmet expectation for discussing illness was associated with higher odds of lower satisfaction (for parents of CSHCN: odds ratio, 7.2; 95% confidence interval, 2.9-18.3; for other parents: odds ratio, 3.0; 95% confidence interval, 1.7-5.5). Discussing more illness topics was associated with discussing more preventive topics (P<.001). Conclusions: Discussing illness is frequently expected and highly prioritized at well-child care visits, particularly for parents of CSHCN. Unmet expectations are associated with lower satisfaction. Incorporating illness concerns at well-child care visits may improve chronic disease management.
ASJC Scopus subject areas
- Pediatrics, Perinatology, and Child Health