Percepções da família da criança com doença crônica frente às relações com profissionais da saúde

A prevalência de doença crônica na infância tem aumentado, impondo à família contato contínuo com profissionais de saúde, ocasião em que a relação desempenha papel relevante. Raras explorações científicas abordam tal temática, apesar de ser apontada como núcleo fundamental para a interação efetiva. O objetivo desse estudo foi caracterizar como a família de criança doente crônica percebe sua relação com os profissionais de saúde. Foram entrevistados 20 cuidadores de criança com doença crônica. O referencial teórico e metodológico adotados foram, respectivamente, o Interacionismo Simbólico e a análise de conteúdo temática. O processo analítico revelou quatro categorias temáticas: papel do cuidador, relações angustiantes, serviços e profissionais e buscando relações acolhedoras. O resultado deste processo interacional que apresenta incongruência de expectativas e comportamentos entre profissional e família é falho e gera sentimento de desamparo, o qual é amenizado pela escuta e compreensão de outras famílias em situação similar

Caracterização do perfil comportamental e de competência social de indivíduos com a síndrome del22q11.2

Resumo:OBJETIVO:caracterizar os problemas comportamentais e de competência social de indivíduos com a síndrome del22q11.2 e compará-los com indivíduos com desenvolvimento típico, segundo informação dos pais.MÉTODOS:participaram desta pesquisa 24 pais de indivíduos de ambos os gêneros, entre seis e 18 anos, sendo 12 indivíduos com a síndrome del22q11.2 (grupo amostral) e 12 indivíduos com desenvolvimento típico (grupo controle). Foi aplicado o inventário comportamental "Child Behavior Checklist (CBCL)".RESULTADOS:oito dos 12 indivíduos com a síndrome foram classificados como "clínico" nas escalas de comportamento e Problemas Internalizantes; cinco dos 12 indivíduos do grupo amostral foram classificados como "clínico" quanto às escalas de comportamento e Problemas Externalizantes. Nas habilidades de competência social, dez dos 12 indivíduos do grupo amostral foram classificados como "clínico".CONCLUSÃO:indivíduos com diagnóstico da síndrome del22q11.2 apresentaram, segundo opinião dos pais, problemas comportamentais e de competência social, em diferentes graus de comprometimento. Quando realizada a comparação entre os grupos pode-se observar diferenças estatisticamente significantes em variáveis dos comportamentos externalizantes e dos comportamentos internalizantes. Desta forma, concluí-se que o grupo amostral apresenta comportamentos mais alterados quando comparados ao grupo controle

Experiences from families of children with cerebral paralysis in context of social vulnerability

OBJECTIVE: to describe and to analyze the experience from families of children with cerebral paralysis living under circumstances of social vulnerability. METHOD: six resident families in area with this characteristic were interviewed. It was opted to use the Symbolic Interactionism as theoretic reference and the Thematic Content Analysis of Bardin as analysis method for the data. RESULT: the experience of such families is represented in the subjects: Reorganizing the Life, with the categories "Discovering the way" and "Accommodating the routine", and Stopping a Constant Fight with the categories: "Primary Carer being overcharged", "Coexisting with the preconception", "Having locomotion difficulty" and "Living with financial difficulties". CONCLUSION: the social vulnerability influences how the family bears the chronic condition. Professionals and strategies of public health are a power to minimize impacts including those related to the family budget, but they have not been effective. They need to be sensitized to become supporting resources, to offer and to guide the access to the support networks and to spur the social service in action when necessary. This study adds knowledge to the already existing by pointing out peculiarities of the family experience in situations regarding two variables of difficult handling: chronicity and social vulnerability, evidencing the role of the professional in search of the solution for the confrontation of demands and sufferings together with the family

A systematic review evaluating the psychometric properties of measures of social inclusion

Introduction: Improving social inclusion opportunities for population health has been identified as a priority area for international policy. There is a need to comprehensively examine and evaluate the quality of psychometric properties of measures of social inclusion that are used to guide social policy and outcomes. Objective: To conduct a systematic review of the literature on all current measures of social inclusion for any population group, to evaluate the quality of the psychometric properties of identified measures, and to evaluate if they capture the construct of social inclusion. Methods: A systematic search was performed using five electronic databases: CINAHL, PsycINFO, Embase, ERIC and Pubmed and grey literature were sourced to identify measures of social inclusion. The psychometric properties of the social inclusion measures were evaluated against the COSMIN taxonomy of measurement properties using pre-set psychometric criteria. Results: Of the 109 measures identified, twenty-five measures, involving twenty-five studies and one manual met the inclusion criteria. The overall quality of the reviewed measures was variable, with the Social and Community Opportunities Profile-Short, Social Connectedness Scale and the Social Inclusion Scale demonstrating the strongest evidence for sound psychometric quality. The most common domain included in the measures was connectedness (21), followed by participation (19); the domain of citizenship was covered by the least number of measures (10). No single instrument measured all aspects within the three domains of social inclusion. Of the measures with sound psychometric evidence, the Social and Community Opportunities Profile-Short captured the construct of social inclusion best. Conclusions: The overall quality of the psychometric properties demonstrate that the current suite of available instruments for the measurement of social inclusion are promising but need further refinement. There is a need for a universal working definition of social inclusion as an overarching construct for ongoing research in the area of the psychometric properties of social inclusion instruments