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This research aims to identify the psychological aspects of how parents experience their child’s retinopathy of prematurity (ROP), through a psychological interview. The interviews were transcribed and analyzed according to the content analysis method. The impact of the diagnosis varied according to the expectations of parents and their understanding of the disease, being softened by family and professional support. The difficulties were felt regarding the social positioning of the children and their limitations. Parents postponed projects, presented insecurity and fear of future sequels. Psychological assistance can occur since the time of diagnosis, considering the shared meanings, promoting the adequacy of expectations and prioritizing the family’s quality of life., Esta pesquisa tem por objetivo identificar os aspectos psicológicos da experiência de mães e pais em relação à retinopatia da prematuridade (ROP) de seus filhos através de entrevista psicológica. As entrevistas foram transcritas e analisadas segundo a técnica de análise de conteúdo. O impacto do diagnóstico variou de acordo com a expectativa dos pais e a compreensão sobre a doença, sendo amenizado pelo suporte familiar e profissional. As dificuldades foram sentidas em relação ao posicionamento social da criança e suas limitações. Mães e pais adiaram projetos, apresentaram insegurança e receio de sequelas futuras. A assistência psicológica pode ocorrer desde o momento do diagnóstico, levando em consideração os significados compartilhados, promovendo a adequação de expectativas e priorizando a qualidade de vida da família.

Purpose:To evaluate the effect of retinopathy of prematurity (ROP) on vision-related quality of life in children.Methods:The Children's Visual Function Questionnaire (CVFQ), an instrument that evaluates vision-related quality of life in children, was used. It is divided into 6 subscales: General Health, Vision Health, Competence, Personality, Family Impact, and Treatment. The sample consisted of parents of premature children up to 3 years of age who had ROP and no neurological damage (ROP group) and parents of premature children up to 3 years of age who had normal vision and absence of other diseases (control group).Results:There were 88 subjects in total, 43 in the ROP group and 45 in the control group. The ROP group had lower scores on the CVFQ than the control group. The Total Index and all CVFQ subscale scores and for were significant lower in the ROP group than in the control group. The ROP group was divided according to the severity of the disease. The Total Index, Vision Health, and Competence scores in children with more severe ROP were significantly lower than those in children with less severe ROP.Conclusion:ROP was shown to have a negative effect on vision-related quality of life in children.

OBJETIVO: Analisar a qualidade de vida em crianças com deficiência visual atendidas em Ambulatório de Estimulação Visual Precoce da Unifesp em duas situações, antes e após intervenções reabilitacionais pela equipe multiprofissional. MÉTODOS: Aplicou-se o questionário de qualidade de vida QFVI. O instrumento possui uma versão para crianças menores de três anos e outra para crianças maiores de três anos (três a sete anos) e é dividido em seis domínios: Saúde geral; Saúde geral da visão; Competência; Personalidade; Impacto familiar e Tratamento. RESULTADOS: A correlação entre as subescalas nos dois momentos mostrou-se significativa. Houve diferença estatisticamente significativa em saúde geral da visão (p=0,029) e outras diferenças importantes foram obtidas em saúde geral, impacto familiar e qualidade de vida geral. DISCUSSÃO: Este instrumento mostrou-se eficiente na aferição da qualidade de vida relacionada à visão nas famílias que frequentam esse ambulatório. As intervenções multidisciplinares promoveram melhora da visão funcional da criança e qualidade de vida da família como um todo. CONCLUSÃO: A qualidade de vida relacionada à visão de crianças atendidas no Ambulatório de Estimulação Visual Precoce da Unifesp apresentou melhora significativa na saúde geral da visão. PURPOSE: To evaluate the quality of life in visually impaired children followed in the Early Visual Stimulation Ambulatory of Unifesp in two moments, before and after rehabilitational intervention of multiprofessional team. METHODS: A CVFQ quality of life questionnaire was used. This instrument has a version for less than three years old children and another one for children older than three years (three to seven years) divided in six subscales: General health, General vision health, Competence, Personality, Family impact and Treatment. RESULTS: The correlation between the subscales on two moments was significant. There was a statistically significant difference in general vision health (p=0,029) and other important differences obtained in general health, family impact and quality of life general score. DISCUSSION: The questionnaire showed to be effective in order to measure the quality of life related to vision on families followed on this ambulatory. The multidisciplinary interventions provided visual function and familiar quality of life improvement. CONCLUSION: The quality of life related to vision in children followed in Early Visual Stimulation Ambulatory of Unifesp showed a significant improvement on general vision health.

Quando uma criança nasce com deficiência, a expectativa da família necessita ser revista, pois se trata de uma situação inesperada, exigindo o ajuste às mudanças de planos. Devido ao significado do relacionamento fraterno, mudanças na saúde e no funcionamento de um irmão irão afetar os outros. As relações com um irmão deficiente dependerão das características da deficiência, além do significado compartilhado na família. O objetivo desta pesquisa foi analisar as repercussões da deficiência para os irmãos, investigando os sentimentos e reações que permeiam as vivências desses indivíduos. Realizouse um grupo de discussão. Os resultados apontaram que cada indivíduo dá significado a vivência com um irmão deficiente segundo seus recursos e história de vida. Os irmãos apresentaram sentimentos negativos como raiva, vergonha e culpa e também ganhos como maturidade, independência e altruísmo. Pode-se concluir que o impacto da deficiência nos irmãos compreende vivências negativas e positivas e que, portanto, deve ser considerado segundo uma rede de influências e peculiaridades intrínsecas das relações familiares. Evidencia-se a necessidade de que esses irmãos sejam assistidos de forma adequada, visando à ampliação dos recursos disponíveis.

To evaluate the quality of life in visually impaired children followed in the Early Visual Stimulation Ambulatory of Unifesp in two moments, before and after rehabilitational intervention of multiprofessional team.A CVFQ quality of life questionnaire was used. This instrument has a version for less than three years old children and another one for children older than three years (three to seven years) divided in six subscales: General health, General vision health, Competence, Personality, Family impact and Treatment.The correlation between the subscales on two moments was significant. There was a statistically significant difference in general vision health (p=0,029) and other important differences obtained in general health, family impact and quality of life general score.The questionnaire showed to be effective in order to measure the quality of life related to vision on families followed on this ambulatory. The multidisciplinary interventions provided visual function and familiar quality of life improvement.The quality of life related to vision in children followed in Early Visual Stimulation Ambulatory of Unifesp showed a significant improvement on general vision health.

When a disabled child is born all the family's expectations need to be reviewed because it is an unexpected situation and needs the family system to be adjusted to the new situation. Due to the meaning that sibling relations acquire during lifetime, changes in health and functioning of a sibling will affect the others. Relations with a disabled sibling will depend on features of disability as well as its meaning shared by the family. The aim of this research was to analyze the manifestation of disability for siblings of disabled people, investigating feelings and reactions that pervade their experiences. A discussion group of siblings was created. Results indicated that each person signifies the experience of a disabled sibling according to his/her resources and life histories. The siblings showed negative feelings, such as rage, shame and guilty, as well as gains, such as maturity, independence and altruism. It can be concluded that impact of disability in siblings involves negative and positive experiences and therefore it must be considered according to a network of influences and idiosyncrasies within family relations. It is necessary that siblings are adequately supported, aiming the strengthening of their available resources.

Este artigo discute estudos sobre a família atual e as situações que ocorrem quando existe uma criança deficiente na família. Parte do princípio de que não se pode negar a importância de aspectos ambientais no desenvolvimento e de que as famílias são fundamentais para o desenvolvimento das crianças. Quando existe uma criança deficiente na família, esta não irá, necessariamente, causar transtornos familiares, mas a ocorrência destes dependerá de múltiplos fatores, desde as crenças dos pais até os recursos da família em lidar com a deficiência. Além disso, mostra que os pais desejam e merecem ser tratados de forma sensível pelos profissionais que atendem seus filhos. This paper discusses studies on families and situations that may happen when a disabled child is born. It is based on the assertion that it is not possible to deny the importance of environmental aspects on development, and that families are fundamental for the child's development. In the case of the presence of a disabled child in the family, that will not necessarily cause disruption in the family life but that will depend on various factors, varying from parents' beliefs to the resources available to cope with the disability. It also shows that parents wish and deserve to be fairly treated by the professionals who attend their children.