RESUMO
OBJECTIVE: To assess satisfaction of parents of children with special health care needs with treatment by office staff, communication with the pediatrician, involvement in decision-making and coordination of services outside the practice. PATIENTS AND METHODS: We used a mixed-method (qualitative and quantitative) approach to collect parental perceptions of the Medical Home services provided by their pediatricians. Six practices were selected to participate in the study based on geographic and patient demographic characteristics. In total, 262 (75% response rate) families completed surveys, and 28 families of these participated in focus groups. The Family Survey collected information (corroborated and enriched with focus group interviews) on parent and child demographics, severity of the child's condition and the burden on parents. We assessed parental satisfaction with treatment by office staff, communication with the pediatrician, involvement in decision-making, and connection to services outside the practice. Survey responses were analyzed using SAS with all associations considered significant at the P < 0.05 level. Focus groups were recorded, transcribed into EZ-Text and analyzed by a team of three researchers to identify patterns and themes inherent in the data. RESULTS: Families reported in focus group interviews that they experienced significant stress due to the demands of caring for a child with special health care needs. Overall, only a small percentage of families reported being dissatisfied with their treatment by office staff (13-14%), communication with the pediatrician (10%), and involvement in decision-making (15-16%). However, a majority of families (approximately 58%) were dissatisfied with the ability of the pediatrician and his/her office to connect the families with resources outside the pediatric office. Families whose children had more severe conditions, or whose conditions had more of an impact on the families, reported being less satisfied with all aspects of communication and care coordination Families of youth with special health care needs (>12 years of age) were less satisfied than families of younger children with the practice's ability to connect them to resources outside the practice. CONCLUSIONS: Both the focus groups and surveys demonstrated that families of children with special needs are under very significant stress. Pediatricians must become better equipped to identify and communicate more proactively with families of CYSHCN that are experiencing significant parent burden. Pediatricians and their staff also need to improve their knowledge of community resources and proactively make referrals to community services needed by families of CYSHCN.
