Parents with mentally retarded Down's Syndrome children : their experiences with the child and the impact of a short-term educationally oriented group on their adjustment

Ten families, each with a young child with Down's Syndrome, participated in a two-year study of parents' experiences with their retarded child and the impact of an educational group meeting on their adjustment. Subjects were an exhaustive population of parents with a young Down's Syndrome child who lived in the geographic area under study. Each child's diagnosis had been confirmed through chromosomal analysis and the parents had been informed of the child's prognosis prior to initiation of the current study.

Parents participated in three semi-structured interviews. During the first interview, parents discussed the diagnosing interview, during which they had first been informed of the child's diagnosis, their initial understanding of retardation and their current life with the retarded child. Results of the first interview indicated that the majority of the parents had been exposed to inadequate counseling procedures and had been given little professional support during the early adjustment period. At the time of this first interview, parents had little knowledge of the retarded child's condition or of available training facilities, and were usually not involved in training the retarded child. They reported a restriction of ordinary social activities due to the retarded child. Parents also had little awareness of the retarded child's probable accomplishments, although they were realistic about the child's future limitations. Parents who attended the educational group sessions were initially more distressed about the child's condition and had more negative stereotypes about the retarded than parents who did not attend.

On the basis of the needs expressed in the first interview, a five-session educational group was organized, which was attended by five of ten couples. A second semi-structured interview was conducted one month after the conclusion of the group sessions. Data obtained from the second interview indicated that attending parents had enrolled their retarded child in training programs, had significantly increased their knowledge of the child's condition, had read books about retardation, and had continued social contact with other group members. There had been no change in behavior of nonattending families.

Two years after the initiation of the study, parents participated in a third and final semi-structured interview, which assessed their experiences with their retarded child through the intervening years and assessed the long-range effect of participation in the educational group sessions. Compared to nonparticipating parents, participating parents were more satisfied with the retarded child's progress, reported enhanced social relationships within and outside of the family, and reported a willingness to rear a second child with Down's Syndrome. Nonparticipating parents were resigned to the retarded child's limitations.

The data included both experiences that were unique to single families and those shared by these families in rearing a retarded child.

Representative quotes from parents were reported. A Fisher's Exact Test was used to compare participating and nonparticipating couples on each variable.

Subjects' recommendations for improving the counseling given to other parents when learning their retarded child's diagnosis were also summarized.