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The birth of a mentally retarded child : informing the parents Mair, Kenneth J.


The purpose of the study was to assess parental satisfaction with the professional help received at the time of the diagnosis of their mentally retarded child. Satisfaction was defined as the parents viewing the help received as appropriate and meeting their needs. Areas of concern were appropriate time of the informing interview, perception of the informant, expressions of caring and understanding; parents' satisfaction with the amount of information presented and the opportunity to express their feelings, and perceptions of adequacy of referrals for follow-up services. The level of research design was that of a descriptive study. The study attempted to answer the research question "How satisfied are parents of a retarded child with professional help received at the time of diagnosis?" A semi-structured questionnaire was used for data collection. The questionnaire was delivered to the parents which met the criteria for participation in the study by program workers. Data was obtained from 25 families. Results showed that frequently mother was first to be informed and usually in a hospital setting. Informing was almost always done by a single person. Parents were found to be in agreement that the diagnosis was presented in a sympathetic manner, and was presented with clarity using language which was quite understandable. Satisfaction rate was found to be lower on areas of concern around the parents involvement in the interview. These included an attempt to determine parents knowledge of the child's condition and areas concerned with the expression of feelings being experienced by the parents. Parents express an overall satisfaction rate of 46%. Lower percentages were also found in referrals to community resources. It was concluded that while the present study did obtain the measurement desired, the method would have been more productive if an interview schedule had been used rather than the semi-structured questionnaire. Much research focuses on parents' views of the informant. A possible direction for further study is parental expressions of emotions in this interview, and how informants can best respond to these feelings. Informing the parents of a diagnosis of mental retardation is but a beginning of a process for the family and professionals. There will, to some degree, be a need for ongoing support by the family and the handicapped child.

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