A Study Of The Mental And Emotional Development Of The Thalidomide Children And Of The Psychological Reactions Of Their Mothers
Thérèse Gouin-Décarie, Ph.D.
In January 1964, a longitudinal study of infants suffering from congenital malformations due to thalidomide was started at the Rehabilitation Institute of Montreal with the collaboration of the Institute of Psychology of the University of Montreal. This long-term project is supported by the Canadian Council of Medical Researches and is under the supervision of the author.
The research has a double aim: (1) Evaluation of the intelligence and social evolution of the thalidomide children suffering from malformations involving the upper and/or lower extremities (the severity of the malformations range from a simple syndactylia to a quadruple phocomelia). Miss Monica O'Neill, L.Ps., assisted by Mrs. Bonnier-Tremblay, B.A.Ps., has the immediate responsibility for this part of the project. (2) Investigation of the mothers' perceptions of their child's handicap. The senior research assistant, Mrs. Ethel Roskies, L.Ps., is responsible for this part of the project.
The work done up to now can be summarized under two main headings: (1) The first evaluation (May-June 1964), which consists of a description of the sample and preliminary data on the subjects' mental development and emotional development. (2) The follow-up (January-June 1966), which encompasses testing of the children and interviews with the mothers. At this date we can only report on the techniques and procedures utilized in this second and twofold experimentation. Too little time has elapsed, of course, for any analysis of the data so recently collected.
The First Evaluation
Table 1 gives the distribution of the subjects according to sex, chronological age, and the length of hospitalization. All of the results reported relate to this initial sample. Nevertheless, we can present here only some of the data gathered with two of the techniques that have been used, viz. the Griffiths Mental Development Scale and the psycho-social scale constructed by the chief investigator.
Other techniques used in the study of the 22 research subjects were:
A series of systematized observations based on the daily routines of the severely handicapped children.
The Haeussermann Educational Evaluation.
The object-concept scale of Jean Piaget.
These techniques have yielded numerous and diversified data about the emotional as well as the intellectual evolution of the children.
Mental development: Results obtained with the Griffiths Mental Development Scale indicate that contrary to almost universal belief, the distribution of the intelligence quotients of the 22 thalidomide children places seven of them in the borderline and mentally defective categories. The rest of the sample are distributed within normal limits, with three of the 15 children in this group apparently being of superior intelligence (Table 2 ).
These preliminary results certainly require further verification. The prolonged hospitalization probably explains the mental retardation of some of the stubjects, and the psychological profiles that were obtained cannot be reconciled easily with the typical profile of the mentally retarded child. The discovery of the factors that explain an unexpected delay in speech development, combined with an extraordinary capacity for "manipulation," is actually one of the foremost preoccupations of the research team.
Emotional development. A wide variety of protocols were obtained from the administration of the psychosocial scale. They range from the absence of only one index of attachment behaviour to the failure of 13 of the 16 possible items. We do not have sufficient space to give the detailed results of this study and shall mention only its major conclusion. At the present level of analysis, our data show no relationship between the severity of the malformations and the psychosocial evolution. In other terms, with similar IQs, a case of dysgenesis of four extremities with hypoplasia of the mandible and aplasia of the tongue shows more ego strength and a superior evolution of the primary processes of socialization than does a case of syndactylia of one hand.
Testing the children. The following techniques were used during this second evaluation:
A protocol of observations of the intellectual, emotional, physical, and social development of the children.
The Stanford Binet Intelligence Scale.
The Gesell Developmental Schedules.
The Haeussermann Educational Evaluation.
The Goodenough-Harris "Draw a Man" test.
A test of Learning Ability by Andre Rey.
The "Patte Noire" Projective Test.
Some original techniques aimed at revealing the child's ideas about his body image. (These techniques have been elaborated by Miss O'Neill and are in a pre-experimental stage).
Three tests by Jean Piaget, aimed at discovering the child's conception of space and his orientation in it :
Tactile discrimination of forms.
Placing a man with respect to his landscape.
The concept of "straight ahead."
The actual testing began on January 30, 1966, and terminated on July 6, 1966. A total of 25 children were examined, 22 of whom had been seen in 1964. With the addition of three new cases, the second sample, to our knowledge, comprises the total population of thalidomide children suffering from congenital malformations of the limbs who survived in the Province of Quebec.
The ages of the children at the time of testing varied from 3 years 1 month to 5 years of age. With one exception, all of the children were examined at the Rehabilitation Institute of Montreal and, for the most part, on an outpatient basis. The examination lasted from three to seven days.
Insufficient time has elapsed for analysis of all the data which have been accumulated, but an overall, rather general comparison with the first evaluation shows certain definite similarities. With respect to the two extremes of the sample, we note that both the brightest and the dullest of the children have continued to progress at the same rate of development, with no significant change in the intelligence quotient. However, within the interior of the sample, where factors such as renewed hospitalization, placement in foster homes, and particular family circumstances have influenced development, much fluctuation has occurred. In the majority of cases, a significant improvement has taken place in both intellectual and emotional developmental levels. A tendency toward slow locomotor and language development, which was evident in the first evaluation, also seems to have persisted in a more modified form in most cases. In every instance, the severity of the child's handicap does not seem to have been the most significant factor in his development.
Interviews with the mothers. The aim of this particular aspect of the project was to study the mothers' perceptions of their children. Using a theoretical model adopted from Festinger (1957), it was hypothesized that the birth of a congenitally disabled child arouses a situation of cognitive dissonance, in which the mother is confronted by conflicting perceptions of the child as both "abnormal" and "my own child." By detailed interviews it was hoped to elicit information concerning the manner in which the conflicts aroused by a given child's normality-abnormality would influence the mother's perception of past development, present status, and future development.
The basic research technique was a series of semistructured interviews held with each mother. For these interviews three schedules were constructed containing both direct and open-end questions. The major divisions in the schedules were in terms of time: present status of child, future plans, and recollection of past development.
In the section on the present, the lengthy schedule dealt with the mother's perception of the child's present physical health and the manner in which the handicap affected it; present eating, sleeping, andm play patterns; the mother's perception of environmental reactions; the socialization of the child, etc.
In the section on the future the exploration centred on plans for schooling, anticipations about adolescence and maturity (e.g., will the child be able to marry? work?), etc.
In the section on the past the interviews were completed by retracing the mother's recollections of her pregnancy, the child's birth, the first year of its life, the hospitalizations, etc. While these schedules were lengthy and detailed, they were used as guidelines to the interviews, rather than as formal questionnaires.
Most of the mothers were interviewed in a separate room at the Rehabilitation Institute of Montreal at the same time that their child was being seen in the Psychology Department for re-evaluation. The main body of interviews began with the present, followed by the future, and finished up with a return to the past up to the present. Notes were made during most of the interviews. However, because it was desirable to keep the interview on the child's birth as unstructured as possible, and because the mothers usually required considerable emotional support during this interview, a tape recorder was used, with the mother's consent.
There has not as yet been sufficient time to analyze all the data accumulated by three years of work with the thalidomide child and his mother, but the interest already aroused by the presentation of some of the preliminary data (in London to the Ciba Foundation; in Boston to the Massachusetts Institute of Technology; in Montreal to McGill University) clearly shows the great neec for systematic psychological research in this particular field.
Thérèse Gouin-Décarie, Ph.D. is a Professor, Institute of Psychology, University of Montreal Psychological Consultant, Rehabilitation Institute of Montreal, Montreal, Quebec