A personal child health record for children with a disability

Abstract

Objectives To test whether a child health record designed for preschool children with a disability would: (a) be used; (b) be valued by carers; (c) change the perception of the health care received by the child; or (d) influence the amount of communication between the family and a professional who is seeing their child.

Methods Ninety-nine families participated, and of these, 67 received the record as the intervention and 32 were controls. After use, copies of the record were examined, and carers completed a satisfaction questionnaire. The families were randomized into three groups for two-phase controlled questionnaire studies to measure changes in the families' perception of their child's health care and the degree of communication between the family and the professional.

Results Satisfaction questionnaires were returned by 53 (79%) of those who received a record, and most of the responses were favourable. Of the 39 (58%) who returned copies, nearly all had made some use of the record, and 24 had made entries in its diary section. There was no accompanying change that could be measured in the perception of the child's health care or in the amount of communication between families and professionals.

Conclusions Those who participated in this small study appreciated the new disability section added to the standard child health record. Copies returned for inspection had nearly all been used. The lack of a detectable change in the family's perception of their child's health care or in communication between families and professionals suggests that the value of the record is limited to its use as an aide-mèmoire.