Perceived First Contact Care for Disabled Children

[摘要] In a mail-back questionnaire survey, 169 mothers of myelodysplastic children were asked whom they would contact first for each of 24 health-related problems. These problems ranged from earaches to shunt obstruction to sexual counseling. All children were being followed in a comprehensive care clinic at a regional center; however, nearly half of these families lived in rural areas distant from the clinic. Eighty percent of children were said to have local physicians. Mothers tended to perceive clinic staff and specialists for first contact care according to severity of the child's motor paralysis, the greater the child's hospitalization experience, and the shorter the travel time from home to clinic. However, when travel time was controlled, there was no difference in overall perceptions for those mothers living more than 90 miles away from the clinic. In a second survey to 91 physicians designated as the "child's local doctor" and a third survey to the 27 clinic staff members, respondents were asked whom should mother contact first for each of the 24 health-related problems. The clinic staff tended to prefer itself, despite the general policy of the clinic to encourage families to utilize comunity resources, including their local physicians. Local physicians tended to prefer themselves over clinic staff, a position consistent with the philosophy of primary care to the chronically disabled child.

[学科分类] 儿科学