Adolescentes y jóvenes portadores de cardiopatías congénitas en etapa de transferencia a la atención médica de adultos / Adolescents and young adults with congenital heart defects in transfer to adult care

Resumen: Introducción: Las cardiopatías congénitas (CC), la malformación congénita más frecuente, han experimentado un aumento de sobrevida y crecimiento exponencial de la población de adolescentes y adultos portado res de CC. Para el éxito a largo plazo urgen intervenciones que optimicen la transición de cuidados de salud desde los servicios pediátricos a los de adulto. Objetivo: Describir el conocimiento y manejo de la enfermedad, autoeficacia y calidad de vida en adolescentes y jóvenes con CC en periodo de transfe rencia en dos hospitales en Santiago de Chile. Pacientes y Método: Estudio no experimental, descrip tivo, de corte transversal. Se aplicó: a) Encuesta de datos sociodemográficos, conocimiento y manejo de su enfermedad y uso de servicios de salud; b) Escala Con-Qol de Calidad de Vida Relacionada con Salud (CVRS) en pacientes con CC y c) Escala de Autoeficacia Generalizada (EAG). Resultados: Se obtuvo una muestra de 51 pacientes, 53% hombres, edad promedio de 17 ± 2,49 años. El 22% de las CC fue de complejidad simple, 29% moderada y 49% alta. Presentaron alta autoeficacia y buenos niveles de calidad de vida, sin embargo, mostraron escaso conocimiento y manejo de su enfermedad cardiaca. Conclusiones: Destaca la poca preparación para lograr una transición exitosa a servicios de adultos y jóvenes portadores de CC, siendo fundamental implementar programas de transición centrados en educación, autocuidado y automanejo de la enfermedad.

Abstract: Introduction: Congenital heart defects (CHD), the most frequent congenital malformations, have shown an in creased survival and exponential growth of the adolescent and adult population living with CHD. Interventions that optimize the transition of patients from pediatric to adult health care services are essential for ensuring positive long-term outcomes. Objective: To describe the knowledge and management of this disease, self-efficacy, and quality of life of young people with CHD during the transition period in two hospitals in Santiago, Chile. Patients and Method: Non-experimental, des criptive, cross-sectional study. Patients completed: a) a survey of socio-demographic data, knowledge and management of their condition, and use of health services; b) the Health-Related Quality of Life (Con-HRQoL) Scale in patients with CHD; and c) the Generalized Self-Efficacy (GSE) Scale. Re sults: We obtained a sample of 51 patients, 53% of them were men, and the mean age was 17 ± 2.49 years. The complexity of the CHD was mild in 22%, moderate in 29%, and high in 49%. Although patients reported high self-efficacy and good levels of quality of life, there was a lack of knowledge and self-management of their heart disease. Conclusions: The study showed that adolescents and young people with CHD are not prepared to achieve a successful transition to adult health care services, and there is a need for the implementation of transition programs focused on education, self-care, and self-management of the disease.

Functional capacity in children and adolescents with congenital heart disease / Capacidade funcional em crianças e adolescentes com cardiopatia congênita

ABSTRACT Objective: To evaluate the physical activity level and functional capacity of children and adolescents with congenital heart disease and to describe correlations between functionality, surgical and echocardiographic findings, metabolic and inflammatory profile and differences between acyanotic and cyanotic heart defects. Methods: A cross-sectional study including children and adolescents with congenital heart disease between six and 18 years old that were evaluated with the 6-minute walk test (6MWT) to assess functional capacity. The short version form of the International Physical Activity Questionnaire (IPAQ) was performed to evaluate physical activity levels. Also, echocardiography and blood collection, to evaluate the metabolic (blood glucose, lipids, insulin) and inflammatory markers (C-reactive protein), were assessed. Results: Twenty-five individuals were evaluated. Of them, 14 had acyanotic heart defects and 11 cyanotic heart defects. Mean age was 12.0±3.7 years, and 20 (80%) were male. IPAQ showed that six (24%) individuals were very active, eight (32%) were active, nine (36%) had irregular physical activity, and two (8%) were sedentary. The mean distance walked in the 6MWT, considering all studied individuals, was 464.7±100.4 m, which was 181.4±42.0 m less than the predicted (p=0.005). There was a positive correlation between Z score 6MWT and the number of surgical procedures (r=-0.455; p=0.022). Conclusions: Children and adolescents with congenital heart disease have low functional capacity, but they are not completely sedentary.

RESUMO Objetivo: Avaliar o nível de atividade física e a capacidade funcional de crianças e adolescentes com cardiopatia congênita, além de descrever correlações entre funcionalidade, achados cirúrgicos e ecocardiográficos, perfil metabólico e inflamatório e diferenças entre cardiopatias congênitas acianótica e cianótica. Métodos: Estudo transversal com crianças e adolescentes com cardiopatia congênita entre seis e 18 anos de idade. Foi realizado o teste de caminhada de 6 minutos para avaliar a capacidade funcional, e aplicou-se a versão curta do Questionário Internacional de Atividade Física (IPAQ) para avaliar os níveis de atividade física. Foram feitos também: exame ecocardiográfico, coleta de sangue para avaliação de perfil metabólico e inflamatório (glicemia, triglicerídeos, colesterol total, lipoproteína de alta densidade - HDL-colesterol, lipoproteína de baixa densidade - LDL-colesterol, hemograma completo, proteína C reativa, insulina). Resultados: Foram avaliados 25 indivíduos, dos quais 14 tinham cardiopatia congênita acianótica e 11 cianótica. A média de idade foi de 12,0±3,7 anos, e 20 (80%) eram do sexo masculino. O IPAQ mostrou que seis (24%) indivíduos eram muito ativos, oito (32%) eram ativos, nove (36%) tinham atividade física irregular e dois (8%) eram sedentários. A média de distância percorrida no teste de caminhada dos 6 minutos, considerando todos os indivíduos estudados, foi de 464,7±100,4 m, sendo 181,4±42,0 m menor do que o previsto (p=0,005). Encontrou-se correlação entre o escore Z do teste de caminhada de 6 minutos e o número de procedimentos cirúrgicos realizados (r=-0,455; p=0,022). Conclusões: Crianças e adolescentes com cardiopatia congênita têm baixa capacidade funcional, mas não são completamente sedentários.

Atuação do psicólogo no acompanhamento de pais de neonatos com malformação fetal / The psychologist's work assisting parents of newborns with fetal malformation

A gravidez é um momento importante na vida da mulher. Notam-se os desejos e as expectativas da família. A mãe imagina o bebê, relaciona-se com o feto, projeta como ele será, enfim, sonha um lugar no mundo para aquele que paradoxalmente não nasceu embora já esteja vivo e presente. O período de gestação é acompanhado por ansiedades específicas, assim sendo, o impacto da notícia de uma cardiopatia congênita no bebê pode tornar-se avassaladora. O bebê real tem um problema cardíaco o que desperta desamparo e regressão materna. Notam-se profundos desejos e expectativas ameaçando a dinâmica familiar. Objetivos: Refletir sobre a atuação do psicólogo junto à família de neonatos com malformação fetal. Métodos: Revisão narrativa da literatura na base de dados da Biblioteca Virtual, no período de 2009 a 2014. Conclusão: A atuação do psicólogo consiste em acompanhar a mãe, o bebê e a família desde o impacto da notícia da malformação. Trabalhar as emoções e fantasias, o luto simbólico do bebê imaginário e a possibilidade de morte. Reconstruir a história do bebê, o lugar que ele ocupará na família e detectar possíveis quadros psicopatológicos. A constituição de uma equipe multidisciplinar é fundamental para oferecer espaço de troca e rede de sustentação

Pregnancy is an important time in a woman's life. It is a time of desires and the family expectations; the mother imagines the baby, connects with the fetus, predicts what the baby will be like, and dreams about a place in the world for the one who, paradoxically, has not yet been born yet is already alive and present. The gestation period is accompanied by specific anxieties, therefore, the impact of the news of a congenital heart disease in the baby can be devastating. The real baby has a heart problem that provokes abandonment and maternal regression. Deep desires and expectations are observed that threaten the family's dynamics. Objective: To reflect on the psychologist's work with the family of the newborn with fetal malformation. Methods: A narrative review of the literature in the Biblioteca Virtual database from 2009 to 2014. Conclusion: The psychologist's work consists in assisting the mother, the baby and the family, from the time they receive the news of the malformation; working with emotions and fantasies, the symbolic mourning of the baby of their imaginations, and the possibility of death; reconstructing the history of the baby and the place he/she will occupy in the family; and detecting possible psychopathological conditions. The formation of a multidisciplinary team, which provides space for exchange of experiences and a support network, is crucial

Congenital Heart Disease and Impacts on Child Development

Abstract Objective: To evaluate the child development and evaluate a possible association with the commitment by biopsychosocial factors of children with and without congenital heart disease. Methods: Observational study of case-control with three groups: Group 1 - children with congenital heart disease without surgical correction; Group 2 - children with congenital heart disease who underwent surgery; and Group 3 - healthy children. Children were assessed by socio-demographic and clinical questionnaire and the Denver II Screening Test. Results: One hundred and twenty eight children were evaluated, 29 in Group 1, 43 in Group 2 and 56 in Group 3. Of the total, 51.56% are girls and ages ranged from two months to six years (median 24.5 months). Regarding the Denver II, the children with heart disease had more "suspicious" and "suspect/abnormal" ratings and in the group of healthy children 53.6% were considered with "normal" development (P≤0.0001). The biopsychosocial variables that were related to a possible developmental delay were gender (P=0.042), child's age (P=0.001) and income per capita (P=0.019). Conclusion: The results suggest that children with congenital heart disease are likely to have a developmental delay with significant difference between children who have undergone surgery and those awaiting surgery under clinical follow-up.

Qualidade de Vida e Cardiopatia Congenita na Infancia e Adolescencia / Quality of Life and Congenital Heart Disease in Childhood and Adolescenc

Os avanços nas técnicas de cirurgia cardíaca e o diagnóstico precoce têm possibilitado maior sobrevida de indivíduos com cardiopatias congênitas. A investigação da qualidade de vida em crianças e adolescentes com cardiopatias congênitas fornece informações complementares aos dados clínicos que podem auxiliar na tomada de decisão dos profissionais de saúde. Embora muitos estudos tenham sido realizados para investigar a qualidade de vida de crianças e adolescentes com cardiopatias congênitas, os resultados mostram-se contraditórios. Enquanto alguns estudos revelam que as cardiopatias podem impactar a qualidade de vida, outros descrevem melhor percepção da qualidade de vida entre crianças e adolescentes cardiopatas quando comparados com controles saudáveis. O objetivo deste estudo é revisar a literatura sobre a avaliação da qualidade de vida relacionada à saúde em crianças e adolescentes com cardiopatias congênitas, de forma a sistematizar o conhecimento existente sobre esse tema na atualidade. Observa-se que as pesquisas procuram investigar aspectos relacionados à personalidade do paciente cardiopata, às estratégias de enfrentamento utilizadas por ele e ao suporte social percebido, visando à melhor compreensão da associação de tais variáveis com o nível de qualidade de vida nessa população.

Advances in cardiac surgery techniques and early diagnosis have enabled the increased survival of individuals with congenital heart disease. The investigation of the quality of life in children and adolescents with congenital heart disease provides complementary information to clinical data that can assist in decision making on the part of health professionals. Although many studies have been conducted to investigate the quality of life of children and adolescents with congenital heart disease, the results prove to be contradictory; while some studies show that congenital heart disease can impact the quality of life, others describe a better perception of quality of life among children and adolescents who suffer from the disease when compared with healthy control subjects. The purpose of this study is to review the literature on the assessment of health related quality of life in children and adolescents with congenital heart disease, in order to systematize the existing knowledge on this topic today. It is observed that research seeks to investigate aspects of personality in cardiac patients, their coping strategies used and perceived social support, aiming at better understanding the association of these variables with the level of quality of life in this population.

Validación del cuestionario de calidad de vida ConQol, en niños chilenos portadores de cardiopatías congénitas / Validation of quality of life questionnaire ConQol for Chilean children with congenital heart diseases

Background: ConQoL questionnaire assesses health related quality of life among children with congenital heart diseases. It has a version for children aged 8 to 11 years and anotherfor children aged 12 to 16years. Aim: To validate ConQol questionnaire for Chilean children with a congenital heart disease. Material and Methods: Using a multicentric cross sectional design, 334 children from four hospitals (54% males), were surveyed. Among them 45% were aged 8 to 11 years and 55%, 12 to 16 years. The study involved three stages: cross cultural adjustment of the original questionnaire, pre-test study, and estimation of its psychometric properties. Content, construct and criterion validity and internal consistency with Cronbach's alpha, were assessed. Results: The version for children aged 8 to 11 years and comprised by three domains (symptoms, activity and relationships), obtained and α ≥ 0.60. In the questionnaire for children aged 12 to 16years, there is one more domain called coping, which obtained an α of 0.53, that was different to the other three domains that obtained an α > 0.70. The correlation between Health Quality of Life and Perception of Health Quality of Life was statistically significant for both groups. The association between Health Quality ofLife and health capability was only significant among children aged 12 to 16years (p < 0.01). Conclusions: The adapted ConQol questionnaire matched properly with the original one. The adapted questionnaire is valid and reliable to assess Health Quality ofLife among Chilean children with congenital heart diseases.

The Psychopathological Influence of Congenital Heart Disease in Korean Male Adolescents: An Analysis of Multiphasic Personal Inventory Test Results

PURPOSE: The aim of this study was to evaluate the psychopathological influence of congenital heart disease (CHD) in Korean 19-year-old males. MATERIALS AND METHODS: The authors compared the Korean military multiphasic personal inventory (KMPI) military profiles of 211 CHD cases (atrial septal defect, ventricular septal defect, patent ductus arteriosus, or combined CHD) with the KMPI profiles of 300 normal controls. The CHD group was also divided according to whether or not the subjects had undergone open cardiac surgery in order to evaluate the psychopathological effects of an operation among the subjects. RESULTS: A decreased result on the faking-good response scale and an increased result on the faking-bad response were observed in the CHD group compared to the control (p<0.01). The neurosis scale results, including anxiety, depression and somatization symptoms, were markedly increased in the CHD group compared to the control (p<0.01). The severity level of personality disorder was also increased in the CHD group (p<0.001). Differences in KMPI scale scores were not related to open cardiac surgery history. CONCLUSION: In this study, young males with CHD tended to report more abnormal results on the multiphasic personal inventory test in comparison to normal subjects, suggesting that CHD may be related to psychopathology in young males in Korea. Therefore, clinicians are recommended to evaluate the psychopathological traits of patients with CHD.

A cirurgia cardíaca pediátrica sob o olhar dos pais: um estudo qualitativo / Pediatric cardiac surgery under the parents sight: a qualitative study

INTRODUÇÃO: As cardiopatias congênitas podem muitas vezes ser corrigidas por meio de cirurgia, assegurando para os pais a expectativa de uma vida normal, entretanto, a vivência da hospitalização, muitas vezes precoce, ocasiona maior sofrimento, sendo a operação o pior momento. OBJETIVO: O objetivo deste estudo foi analisar a vivência de famílias de crianças submetidas à cirurgia cardíaca, identificando os recursos de enfrentamento utilizados pelos familiares. MÉTODOS: A abordagem qualitativa foi a opção metodológica deste estudo, onde realizou-se seis entrevistas semi-estruturadas e 100 horas de observação participante. Foi utilizada a análise temática para a compreensão dos dados. RESULTADOS: Os resultados foram categorizados em quatro núcleos temáticos: sentimentos e emoções frente ao adoecimento do filho; a doença do coração sob o olhar materno; mãe e filho na dinâmica da unidade de terapia intensiva e recursos de enfrentamento. A fala das mães demonstrou a importância do coração devido a seu simbolismo que, por sua vez, potencializa sua fragilidade emocional diante do adoecimento. A religiosidade e uma consistente rede social de apoio foram fatores contribuintes para a manutenção de comportamentos adaptativos. A presença da mãe em todas as etapas do tratamento da criança contribuiu para a minimização do sofrimento gerado pela internação. CONCLUSÕES: A vivência das famílias foi caracterizada por sentimentos ambivalentes, como medo da morte, culpa e impotência frente às diferentes etapas do tratamento. A angústia e a ansiedade prevaleceram diante de situações desconhecidas, necessidade de informações frente às condutas terapêuticas, rotinas hospitalares e da própria situação de vida das famílias entrevistadas.

INTRODUCTION: Congenital heart defects can often be corrected through surgery, providing for parents to expect a normal life, but the hospitalization experience often early, causes more pain, for which surgery is the worst moment. OBJECTIVE: The aim of this study was to analyze the experience of families of children undergoing cardiac surgery and to identify the coping resources used by the families. METHODS: A qualitative approach was the metodology of choice for this study, which took place with six semi-structured interviews and 100 hours of observation. Thematic analysis was used to understand the data. RESULTS: The results were categorized into four themes: feelings and emotions facing the illness of the child; heart disease under the watchful mother, mother and child on the ICU and coping resources. The speech of mothers demonstrated the importance of the heart due to its symbolism that enhances their emotional fragility in the face of illness. Religiosity and a solid social network of support were contributing factors for the maintenance of the adaptive behaviors. The presence of mothers in all stages of the child's treatment contributed to minimizing the suffering generated by hospitalization. CONCLUSION: The experience of families was characterized by ambivalent feelings such as fear of death, guilt and helplessness against the different stages of treatment. The anguish and anxiety prevailed in the face of unknown situations when information were required before therapeutic procedures, hospital routines and the actual life situation of the families.

Experiencia de una madre con hijo con malformación / Experience of a mother with child with malformation

El propósito de este estudio es construir conocimiento desde la experiencia de vida de una madre con un hijo de un mes de vida, operado de malformación congénita cardiaca durante la hospitalización en una Unidad Pediátrica de un Hospital de la Región Metropolitana de Chile. OBJETIVO: comprender el significado de este fenómeno fortaleciendo el saber del cuidado de enfermería, y contribuir a mejorar la atención. METODOLOGÍA: investigación cualitativa. RESULTADO: se devela el significado de la experiencia vivida del sufrimiento constante y ganas de salir adelante junto a la firmeza en su autoconcepto de madre. INTERPRETACIÓN: la forma en que se presenta la experiencia de la madre, se analiza desde la perspectiva de Heidegger, evidenciándose como un proceso que implica sufrimiento desde la noticia del embarazo, diagnóstico y pronóstico. La falta de cuidado percibido, la escasa atención o protección otorgada por el equipo de salud acentúan emociones como miedo, temor, soledad, rabia e impotencia por su situación de vida. A pesar de ello la madre reafirma su autoconcepto. CONCLUSIÓN: se evidencian ámbitos totalmente posibles de modificar para humanizar el cuidado, en que prime la percepción de la madre y el hijo como una unidad de cuidado siempre que un niño se hospitaliza, y enfrentarla en una relación de cuidado de ayuda.

The purpose of this case study is to build knowledge from the life experience of a mother with a child 1 month old, with surgery by congenital cardiac malformation during hospitalization in a pediatric unit. OBJECTIVE: to understand the significance of this phenomenon strengthening the knowledge of nursing care, and to help improve attention. METHODOLOGY: qualitative research. RESULT: this reveals the meaning of the lived experience of constant suffering and desire to move forward with the strength in her self-concept of mother. INTERPRETATION: the way the experience of the mother is presented, is analyzed from the perspective of Heidegger, showing as a process that implies suffering from the news of pregnancy, diagnosis and prognosis. Lack of care perceived, the lin protection provided by the health team emphasize emotions like fear, loneliness, anger and helplessness about her situation in life. In spite of this, the mother confirms her self-concept. CONCLUSIONS: some areas entirely possible to modify to humanize the care, that prime the perception of the mother and child care as a unit whenever a child is hospitalized are evidenced, and faceit in a relationship of supportive care.

Calidad de vida en pacientes portadores de cardiopatías congénitas / Quality of life in patients with congenital heart disease

Antecedentes: La corrección de las Cardiopatías Congénitas (CC) tiene como fin mejorar la calidad de vida de los pacientes portadores de ellas, pero no existen en nuestro medio estudios sobre ésta, ni su comparación con niños sanos. Objetivos: Estudiarla calidad de vida de los CC, objetivando tres áreas, en tres grupos de pacientes de complejidad diferente, y compararlos con un grupo sano. Método: Se escogieron 4 grupos de niños del área sur oriente de Santiago; 3 grupos de CC: comunicación interventricular (CIV), Tetralogía de Fallot(T4F), Ventrículo único (VU), y un grupo de niños sanos (S). Se sometieron a encuesta de calidad de vida ellos y sus padres, se evaluaron tres áreas especificas; actividad escolar, actividades cotidianas (actividad física y generales) y vida familiar. Se objetivó capacidad física con Test de Esfuerzo (TE), con protocolo de Bruce modificado, en todos. El análisis estadístico incluyó análisis de varianza y chi cuadrado. Resultados: Se seleccionaron 65 niños, 12 con CIV, 18 con T4F, 15 con VU,y 20 sanos. Treinta y cuatro de ellos son hombres (52 por ciento). En escolaridad no existen diferencias significativas en edad/curso, promedio de notas (5.7), repetición (24.8 por ciento), en percepción de notas y rendimiento escolar los pacientes con VU tanto ellos como sus padres perciben peor rendimiento que sus pares. Con relación a actividades físicas generales el TE reveló concordancia con percepción cualitativa y diferencias de rendimientos de acuerdo a la gravedad de la patología, estadísticamente significativa sólo VU en esfuerzos mayores (S: 11:75min CIV: 12:2min, T4F:10min y VU: 7:3min). Con relación a actividades cotidianas, no perciben limitación de la vida diaria en forma significativa, excepto en algunas actividades, los pacientes con VU. Los padres de niños con CC tienen percepción de mayor limitación. Con relación a la vida familiar no hay diferencias significativas entre los 4 grupos...

Background: Surgical correction of congenital heart diseases (CHD) intends to improve quality of life (QL) in affected patients. In Chile this aspect has not been objectively evaluated, especially through comparison with normal children. Aim: to compare the quality of life in three groups of CHD patients with that of normal controls. Three aspects of QL were evaluated. Methods: three groups of patients with CHD (Ventricular septal defect, Tetralogy of Fallot, Single Ventricle) were compared to a group of healthy children from the south east area of Santiago. A standard QL questionnaire was used to evaluate school performance, physical and general daily activities and family life . A treadmill test with a modified Bruce protocol was used to evaluate physical capacity Results: There were 12 patients in the VSD, 12 in the Fallot, 15 in the Single Ventricle and 20 in the normal groups. 52 percent were males. Age at each school level, school performance (grades and failure rates) were similar across groups except for a lower performance in patients with Single Ventricle. Physical capacity (duration of stress test) was lower in patients with Single Ventricle (7.3 min average) compared to normal (11.75min), VSD (12.2min) and Tetralogy of Fallot (10.0 min). The results of these test correlated with subjective performance of physical capacity. Similarly patients with Single Ventricle perceived a greater limitation for daily activities (60 percent) compared to VSD (100 percent), Fallot's (89 percent) and healthy controls (89 percent). In general, parents of CHD patients perceived a greater limitation compared to their children. Family life was not different among groups. Conclusions: The perception of QL in these patients with corrected CHD did not differ compared to healthy controls. Objective evaluation showed a lower physical capacity in patients with a more severe type of CHD.

The Life of Adolescent Patients with Complex Congenital Heart Disease

PURPOSE: In the present study, an analysis of the life of adolescents with complex congenital heart disease (CHD) was done using grounded theory. Consideration was given to the socio-cultural context of Korea. METHODS: After approval from the institutional review board of Y hospital, 12 patients ranging in age from 14 to 35 were recruited. Data were gathered using in-depth interviews. Theoretical sampling was performed until the concepts were saturated. RESULTS: The results confirmed the life of adolescents with complex CHD as a 'journey to finding uniqueness of oneself as a person with CHD'. The life consisted of 3 stages. In the crisis stage, participants had a feeling of threat to self-existence, and made an effort to be the same as others. In the self-recognition stage, participants who had sufficient role-performance built self-esteem while those who did not fell into self-accusation. In the self-establishment stage, participants who reached sufficiency in independence and knowledge planned the future, whereas those who did not conformed to the realities of life. CONCLUSION: The results of present study provide help in understanding the experiences of adolescents with CHD and provide a basis for developing nursing intervention strategies for these patients.

O significado de ser mãe de um filho cardiopata: um estudo fenomenológico / The meaning of being a mother of a child with heart disease: a phenomenologic study

A busca por aprender o que significa para a mãe ter um filho cardiopata deu-se por eu perceber que minha experiência como enfermeira assistencial desse binômio requeria-me maior aproximação de sua realidade. Para tal utilizei a pesquisa qualitativa, numa abordagem fenomenológica...

Family Resiliency Facto for the Adaptation of Family who have a Congenital Heart Disease / 간호학회지

PURPOSE: The purpose of this study was to explore the relationships of family strain, perceived social support, family hardiness, and family adaptation and identify the family resiliency factors for the adaptation of families who have a child with congenital heart disease. METHOD: The sample consisted of 90 families who had a child diagnosed with congenital heart disease and completed surgical treatment. Data was collected from parents using a questionnaire. RESULTS: Results from path analyses revealed that family strain had a direct effect on both perceived social support and family hardiness, and an indirect effect on family adaptation. Also, the findings revealed that perceived social support had a direct effect on both family hardiness and family adaptation, and family hardiness had a direct effect on family adaptation. Thus, these results indicated that perceived social support and family hardiness had a mediating effect on family strain. CONCLUSION: Findings provide the evidence for the theoretical and empirical significance of perceived social support and family hardiness as family resiliency factors for family adaptation. Clinical implications of these findings might be discussed in terms of family-centered nursing interventions for the families who have a child with congenital heart disease based on an understanding of family resiliency for adaptation.

A ausculta e a escuta: reflexões sobre a psicodinâmica da criança cardiopata / Psychodynamic reflections about child with heart disease

As cardiopatias podem causar importantes repercussões no desenvolvimento emocional da criança. As representações que a família desta criança tem sobre a enfermidade devem também ser interpretadas e colocadas ao grupo multiprofissional que os trata. O lugar ocupado por este binômio criança-família a partir destas representações é o enfoque básico deste trabalho

Efeitos pasicológicos no sintoma cianose em crianças do sexo feminino portadoras de cardiopatia congênita / Psychological effects of cyanosis in female children with congenital cardiopathies - eight female children observations

A cianose aparece como um dos principais sintomas em crianças portadoras de cardiopatia congênita do tipo cianogênica. O objetivo deste estudo foi analisar os efeitos da cianose no desenvolvimento psicológico infantil feminino. Foram atendidas 8 crianças do sexo feminino com média 8,1 anos, portadoras de cardiopatia congênita do tipo cianogênica. Foram utilizadas técnicas projetivas (desenho livre) e entrevistas abertas. De acordo com os resultados, 75 'por cento' utlizaram a cor roxa como principal em seus desenhos e 25 'por cento' também se utilizaram da mesma cor, mas com menor evidência. Em relaçäo às entrevistas, observou-se que 100 'por cento' demonstraram desagrado muito significativo por serem cianóticas, apresentando introversäo, auto-estima e autoconfiança rebaixadas, além da auto-imagem distorcida com sentimentos de insegurança e inferioridade, notando-se comportamento agressivo. Por meio deste estudo, concluiu-se que os efeitos da cianose interferem no desenvolvimento emocional da criança.

Características de personalidad y calidad de vida en pacientes adultos con cardiopatías congénitas cianóticas complejas / Characteristicas of personality and quality of life in adult patients with complex cyanotic congenital heart defects

Las cardiopatías Congénitas Cianóticas Complejas (CCCC) son patologías de baja incidencia en la población general. Mayormente la muerte sobreviene durante la primera infancia debido a las múltiples limitaciones funcionales asociadas, a menos que se practique cirugía correctiva prontamente. Los avances médicos han logrado prolongar la vida de estos pacientes actualmente. No obstante, es llamativo que pacientes que padecen CCCC, no intervenidas, exeden el límite de edad para estas patologías. Nos planteamos explorar características de personalidad y calidad de vida en personas sobrevivientes. Evaluamos a 11 pacientes adultos (7 mujeres y 4 hombres) con CCCC, sin intervención correctiva, mediante el SCID-II, el MMPI, el Psicodiagnóstico de Rorschach y el Ability Index de Somerville y Warnes. Se observaron características de personalidad comunes entre los pacientes, predominando rasgos evitativos, paranoides, narcistas, así como restricción del efecto. Además, la mayoría presenta un bajo nivel de calidad de vida. Se recomienda un abordaje integral de estos pacientes, considerando sus características psicosociales