The doctor, the disabled child and her family: the meeting of the disabilities / O Médico, a Criança com Deficiência e sua Família: O Encontro das Deficiências.

AUTOR(ES)
DATA DE PUBLICAÇÃO

1998

RESUMO

The present investigation is a qualitative study of the doctor-patient relationship in pediatrics, specifically of the relationship between pediatrician and children with congenital anomalies and their families. The study is based on the author’s experience in special schools as a pediatrician. The basic assumption of this study is that the physician has difficulty in relating to these patients and their families due to his “disabled” medical training. The objectives of the study were: 1) to identify the feelings and attitudes of the pediatrician in his relationship with children with congenital anomalies and their relatives, and 2) to identify the difficulties experienced by the pediatrician in relating to this families. The methodology used was a “variant of qualitative research” which explores the concept of social representations according to the most important currents of thought in the health area, allied to the psychodrama method for data collection and analysis. Ten pediatricians were interviewed using a nonstructured questionnaire. The interviews were recorded on tape and data analysis demonstrated the “disablement” of medical training in terms of teaching about the doctor-patient relationship. In addition, the author proposes the thesis that this difficulty is linked to the image of omnipotence both of the doctor and of other health professionals, created by their university education. With respect to medical practice, intense activity was identified in terms of number of work hours per day, which impairs continuing formal and informal education, the reflection about this practice and the attention given to each patient, characterizing what we call “activism”. It was also possible to perceive differences in the doctor-patient relationship in terms of the social class of the patient. Feelings of emotional shock, depression and impotence were detected in physicians facing these disablements, with emphasis on the anxiety they feel when they must talk to the parents about the disablement of their children. As to the specific time when the news should be broken to parents about the birth of a baby with a congenital anomaly, the practices identified are considered inadequate by most of those who study this subject. With the intention of “protecting the mother”, almost all the doctors interviewed revealed the practice of first disclosing the news to the father without the presence of the mother, whom they submit to sedation soon after delivery. Another practice identified was to create expectations about the health of the baby in order to “prepare” the mother and the other relatives to receive the news. Finally, the author suggests that medical education should start to involve the discussion of the relationship with the families of disabled children and the creation of multiprofessional teams in maternities and in Intensive Care Units in order to transmit information to the parents and relatives in cases of congenital anomalies or of serious health conditions involving the possibility of sequels or of infant death.

ASSUNTO(S)

disabled person psychology anomalias congênitas deficiência disabled people family relação médico-paciente-família health professional-patient relationship

ACESSO AO ARTIGO

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