Breaking Bad News: Doctors’ Feelings and Behaviors

Los ginecólogos o los ultrasonógrafos son los profesionales que deben comunicar a los padres la noticia de la discapacidad de su hijo, en el período prenatal. A menudo, estos profesionales no están preparados para comunicar este suceso a los padres y tienen algunas limitaciones que les llevan a actuar de forma inapropiada. Por ello, los objetivos de esta investigación eran identificar y describir las emociones de los profesionales que afrontan esta situación y conocer sus comportamientos cuando tienen que informar a una pareja de la anomalía de su hijo. Se entrevistaron a 10 ginecólogos y 10 ultrasonógrafos: 5 trabajaban en los Servicios de la Salud Pública y 5 eran clínicos privados. Las entrevistas eran semi-estructuradas. Los resultados muestran que, según los participantes, no hay un momento específico, ni un comportamiento estándar que sea el más apropiado para semejante situación. Sin embargo, los datos muestran que todos los participantes se sintieron dolidos o frustrados cuando tuvieron que informar de este fenómeno, y se involucraron en el caso. Concluyendo, no ha hay ningún curso de la licenciatura que los haya preparado para afrontar esta deficiencia. Se hacen algunas sugerencias acerca del currículo de licenciatura para mejorar la preparación de los futuros médicos. Incluso se necesita un procesional de la salud mental en los equipos multidisciplinarios que se forman para afrontar el dolor que se produce en el momento de semejante noticia.The announcement about the handicap of a child is communicated to parents by gynecologists or ultrasonographists, in the prenatal period. Often, these professionals are not prepared to communicate this news to the parents, and they have some limitations that lead them to act inappropriately. Therefore, the aims of this research were to identify and to describe the feelings of professionals facing this situation, and to examine their behaviors when they have to inform a couple about the child’s anomaly. Ten gynecologists and ultrasonographists were interviewed: five were consultants in Public Health Services and five were private clinicians. Interviews were carried out with a semi-structured script. The results showed that, according to the participants, there is no specific moment, nor a standard behavior, that is most appropriate for making such an announcement. Yet the data show that all the participants feel hurt or frustrated when they must announce this phenomenon, becoming involved with the case. In conclusion, no graduate course has prepared them to deal with this deficiency. Suggestions are made concerning the graduate curriculum in order to improve the preparation of future doctors. A mental health professional is even necessary among the multidisciplinary team formed to deal with the pain produced in the moment of the announcement

Quality of life of people with mild intellectual disability

Não é prática comum dar voz a pessoas com deficiência, mesmo quando se trata da investigação de sua própria qualidade de vida. Assim, este estudo teve por objetivo conhecer a opinião de 15 adultos com deficiência mental leve em relação a sua qualidade de vida e a opinião de seus cuidadores também a esse respeito, por meio de um instrumento que avalia a qualidade de vida (WHOQOL-Bref). Os dados foram analisados estatisticamente e comparados. Os resultados mostram que a diferença entre as avaliações foi pequena nas questões referentes à satisfação com os domínios físico, psicológico, das relações sociais e do meio ambiente. A avaliação feita pelas pessoas com deficiência foi apenas ligeiramente superior àquela feita por seus cuidadores. Não houve diferença estatisticamente significativa entre as avaliações, do que se conclui que as pessoas com deficiência mental são capazes de falar de suas próprias vidas de maneira positiva e bastante realista.People with intellectual disability are often neglected even though it is a question of their own quality of life. Thus, this study aimed to know the opinion of 15 adults with mild intellectual disability related to their quality of life and the opinion of their caregivers about it with an instrument that evaluates quality of life (WHOQOL-Bref). The data were statistically analyzed and compared. The results show that the difference between the evaluations was small in the questions concerning satisfaction with the physical, psychological, social relation and environment welfares. People with disability' evaluation was few higher than their caregiver's evaluation. There weren't significant statistics difference between evaluations, so that we conclude that the people with intellectual disability are able to talk about their own lives with an optimistic view and a very realistic way

Mães e filhos especiais: reações, sentimentos e explicações à deficiência da criança

The born of child with disability give new reality to the family. The objective of this study was to determine the reactions, explanations, feelings and expectations the mothers present when notificated of the children disability. The study was conducted on twenty five mothers referred to the Genetic Counseling of the Faculty of Medicine de Ribeirão Preto - University of São Paulo. We used a semi-structural questionnaire. About the mothers, 38% aged between 20 to 25 years-old and 71% first incomplete degree. The children, 52% less than one year-old. Their diagnosis were 24% Down's Syndrome and 20% didn't have diagnosis. The data - qualitative analysis - demonstrated the emotional impact of the news was found to be as strong as a shock. Denial, sadness, resignation and revolt were some of the feelings experienced by the mothers. The explanation of the disability was from scientific aspects to popular belief. They expected theirs sons to be cured. Independently to the problem, the notification was the shock. To the mothers was difficult to accepted the diagnosis and found the cure indefatigably. The professionals have to known this emotional conditions to work effectively with the reality of every family.O nascimento de uma criança deficiente traz nova realidade à família. O objetivo foi apreender quais reações, explicações, sentimentos e expectativas as mães exprimiam frente à notícia da deficiência do filho. A amostra caracterizou-se por 25 mães encaminhadas ao Aconselhamento Genético da FMRP- USP, entrevistadas individualmente sobre um roteiro semi-estruturado. Delas, 38% estavam entre 20/25 anos e Iº grau incompleto (71 %). As crianças 52% com até 1 ano. Os diagnósticos: 24% Síndrome de Down e 20% sem diagnóstico. Os dados - Análise de Conteúdo Temática - demonstraram que ao receberem a notícia as mães ficaram chocadas. Manifestaram sentimentos de negação, tristeza, resignação, revolta. Explicaram a problemática cientificamente e por crendices populares. Negaram a deficiência. Apresentaram expectativas à cura. Independente da problemática, a notícia choca. Há dificuldade em aceitar o diagnóstico e constante busca de cura. Os profissionais devem conhecer as condições emocionais lidando, assim, efetivamente com a realidade de cada família

Sobrecarga Emocional e Qualidade de Vida em Mães de Crianças com Erros Inatos do Metabolismo

This study aims to investigate the perception of women having children with Inborn Errors of Metabolism (IEM) about the experienced emotional burden and their own quality of life. The participants were 21 mothers of children with IEM, with serious neurological injury. The children were of both sexes, up to ten years old. Data collection was accomplished through instruments WHOQOL-Bref and Burden Interview. The data were statistically analyzed and compared. The care of children with IEM interfere in a negative way in the quality of life of the mother, especially in the domain of their social relations, resulting in an emotional burden; the greater the burden, the lower the perceived quality of life.Este estudo objetivou investigar a sobrecarga emocional e a percepção da própria qualidade de vida em mães de crianças com Erros Inatos do Metabolismo (EIM). Participaram 21 mães de crianças com EIM, com comprometimento neurológico grave, de ambos os sexos, com idade até dez anos. A coleta de dados foi realizada por meio dos instrumentos WHOQOL-Bref e Burden Interview. Os dados foram analisados estatisticamente e comparados. Foi observado que os cuidados com a criança com EIM interferem negativamente na qualidade de vida das mães, sobretudo no domínio relações sociais, acarretando uma sobrecarga emocional, de tal forma que quanto maior a sobrecarga, mais baixa a percepção sobre a própria qualidade de vida

Congenital adrenal hiperplasia: The diagnosis comprehension and auto-image implications

The congenital adrenal hyperplasia (CAH) is a genetic syndrome characterized as a condition of intersexuality. Seven womem with CAH were individually interviewed, under care of the clinic for Determination and Sexual Differentiation of HCFMRP-USP the aim of this alway was evaluate how they knew about the CAH. The women aged from eighteen to forty years old, five underwent genital corrective surgery, and all women belong to a low social and cultural status and education. The results indicated some kind of understanding about the syndrome. Four single women did not initiate their sexual life and three of them claimed that the syndrome was the major difficulty for that. All women did not refer physical prejudice related to vulva reconstitution and they were capable to have pleasure and orgasms.A Hiperplasia Congênita de Supra-Renal (HCSR) é uma síndrome genética, que caracteriza uma condição de intersexualidade. No intuito de compreender o que as mulheres conhecem sobre a síndrome, foram entrevistadas sete mulheres portadoras de HCSR, com idades entre 18 e 40 anos, de baixo nível sociocultural, dentre as quais 5 realizaram cirurgia corretiva de genitália, sendo 3 casadas e 4 solteiras. Os resultados indicaram entendimento sobre a síndrome. As 4 mulheres solteiras não iniciaram vida sexual e 3 delas colocaram a síndrome como principal dificuldade. Todas referiram satisfação com a cirurgia corretiva, não sofrendo prejuízos relacionados ao prazer e orgasmos, porém têm dificuldades relacionadas à auto-imagem

Investigations in genetics counselling: the impact of the first notification - parental reaction to a deficiency

O presente trabalho procurou conhecer, junto aos pais de crianças portadoras de deficiência e/ou anomalias genéticas, qual o impacto causado pela notícia, suas reações e sentimentos. Participaram deste estudo dez (10) famílias, que foram encaminhadas ao Ambulatório de Genética Médica do Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto da Universidade de São Paulo para diagnóstico e orientação. Os relatos mostraram que o impacto emocional da notícia é grande, desencadeando reações diversas, entre elas choque e agressividade. Culpa, negação e raiva são alguns dos sentimentos vivenciados pelos pais. A notícia é dada quase sempre de maneira inadequada, dificultando a compreensão do diagnóstico. Pode-se concluir que, independentemente do quadro clínico, os pais sofrem o impacto da notícia de que seu filho é portador de deficiência e/ou anomalia genética. O processo de sofrimento é agudo, passando os pais por um período de enlutamento pela perda do filho esperado.The objective of the present study was to determine the impact caused by notification of genetic deficiencies and/or anomalies on the parents of affected children,as well as their reactions and feelings.The study was conducted on tem families referred to the Medical Genetics Outpatient Clinic of the University Hospital,Faculty of Medicine of Ribeirão Preto, University of São Paulo, for diagnosis and counselling. The emotional impact of the news was found to be very strong,triggering varios reactions such as shock and agressiveness.Guilt,denial and anger are some of the feelings experienced by the parents.The news is almost always given in an inadequate manner, preventing a proper understanding of the diagnosis. We may conclude that, regardless of the clinical picture, the parents feel the full impact of the news that their child has a genetic deficiency and/or anomaly.The suffering process is acute, with the parents going through a morning period for the loss of the expected child

Perda e luto: vivências de mulheres que interromperam a gestação por malformação fetal letal

The scope of this study was to investigate the grieving experiences of women who terminated pregnancies under judicial authorization, due to life-incompatible fetal malformation. Ten women attended in the Fetal Medicine Department of Botucatu Clinical Hospital participated in the study. Data collection was conducted by means of semi-structured interviews forty days after termination. The interviews were recorded and transcribed in full, with the data analyzed from the thematic content analysis perspective. The results revealed that the mothers sought explanations and meanings for the loss, with religious responses and self-blame being very frequent. The reports were marked by feelings of sadness, longing and sensations of emptiness due to the loss of the child, revealing the need of the mothers to dwell on the issue. The mothers were and continued to be linked to their children; the termination of the pregnancy, although being a choice to minimize the pain of an inevitable loss, did not spare the women from experiences of great suffering. The study includes input for the discussion and planning of health approaches and care for women who terminate their pregnancy due to lethal fetal malformation, by means of judicial authorization.Departamento de Neurologia, Psicologia e Psiquiatria UNESP, Distrito de Rubião Jr s/n, Rubião Jr. 18.618-970, Botucatu SPDepartamento de Psicologia Ciências e Letras de Ribeirão Preto USPDepartamento de Neurologia, Psicologia e Psiquiatria UNESP, Distrito de Rubião Jr s/n, Rubião Jr. 18.618-970, Botucatu S