Guidance Materials for Parents of Children with Clefts

Abstract

This investigation resulted from an interest at the Cleft Palate Research Center, University of Pittsburgh, in developing an effective method of parent guidance. Initially, questions were raised regarding the advantages of resorting to certain printed materials designed to provide basic information about clefts, resulting handicaps, methods of treatment, prognosis, and psychological implications for parents and children. As a first step in the process of determining the desirability of using such materials, a segment of the Center's clinical research group (a plastic surgeon, a psychiatrist, a clinical psychologist, and a speech pathologist) entered into preliminary discussions relative to the various implications of preparing and utilizing printed information designed to meet the needs of parents. At the outset, it was obvious to this group that parents and their children differ widely in major life dimensions and that, as the result of this, they have different problems to be met. Secondly, certain difficulties—such as hearing loss—which are likely to occur in many children, do, in reality, arise in a variety of sequences and according to differing time schedules. Added to these already awesome problems, was the recognition that parents were bound to react to printed materials in terms of their own previous experiences, education, knowledge about clefts, and both resolved and unresolved attitudes to-ward'the particular child in question. However, in spite of this prior knowledge, it seemed that materials meant for general use would of necessity have to be geared to the 'average' parent of the 'average' child with cleft palate. This recognition led to still other even more specific questions that the group found almost impossible to deal with. We wondered how a team could prepare a pamphlet which would give just the proper amount of stress to each area of coverage and how we might avoid presenting a biased picture which reflected our own particular interests and competencies. If we could resolve this initial dilemma, we would then be faced with the even greater one of deciding when