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Abstract(s)
Crianças com necessidades especiais de saúde requerem, na maioria das vezes, cuidados de saúde diferenciados de grande complexidade que colocam os pais perante contextos sociais e familiares problemáticos. O acompanhamento destas crianças em contexto domiciliário coloca as famílias perante tensões e desafios, exigindo aos enfermeiros um acompanhamento próximo e facilitador na dupla transição vivenciada, isto é, ser pai ou mãe e ser familiar cuidador.
O ajuste de papéis acima referido, estimulou na investigadora a vontade de compreender as dificuldades e as necessidades sentidas pelos pais cuidadores de crianças com Necessidades Especiais de Saúde, bem como estudar a relação entre sobrecarga física, emocional e social e a auto-eficácia.
Foi desenvolvido um estudo exploratório, transversal, com uma abordagem de carácter quantitativa. Para o efeito utilizou-se um questionário sócio-demográfico, o questionário de sobrecarga do cuidador informal (Martins et al, 2003) e a escala de Empowerment de Rogers et al. (1997). Estes instrumentos foram aplicados a um grupo de indivíduos, principais cuidadores de crianças com Necessidades Especiais de Saúde afectas ao Núcleo Regional de Faro da Associação Portuguesa de Paralisia Cerebral, constituindo uma amostra não probabilística, por conveniência. A análise dos dados foi efectuada recorrendo ao programa de tratamento estatístico Statistical Package for The Social Sciences (SPSS 18.0).
Os resultados evidenciam um predomínio de mulheres cuidadoras, com grau de instrução correspondente ao ensino secundário e com relação parental com a criança.
A maioria os participantes afirmam ser pessoas coerentes e de palavra, capazes de ultrapassar barreiras, considerando que o primeiro passo para resolver os problemas começa pela vontade de os resolver, demonstrando sensibilização e envolvimento na análise crítica das suas vidas privadas no sentido da compreensão das causas opressivas circundantes e do desenvolvimento de estratégias de resolução de problemas. Manifestam baixa sobrecarga associado ao papel de cuidar, qualidade de vida aceitável, boa saúde, satisfação com a vida pessoal e equilibrio familiar. Consideram, ainda que controlam a situação de saúde da criança e classificam como "Boa" a experiência de cuidar da criança com Necessidades Especiais de Saúde
Interventions of health care providers have been encouraged towards the recognition of the participation of families in child care. However, despite family-focused care being discussed and defended since long, its practical application still embraces today an array of challenges, including the understanding of health care needs of the child/family within a dynamic developing environment as well as health care provided at home. The adjustment of roles of family caregivers mentioned above, when related to parental condition incited the investigator the willingness to understand the difficulties and needs experienced by parents caring for children with Special Health Care Needs. An exploratory, cross-sectional study was carried out from a quantitative point of view through the application of a socio-demographic questionnaire consisting of a set of issues, psycho-sociological indices and scales applied to a group of individuals, main caregivers of children with Special Health Care Needs assigned to the Núcleo Regional de Faro da Associação Portuguesa de Paralisia Cerebral (Faro Regional Centre of the Portuguese Association of Cerebral Palsy) and is a non-probabilistic sample of convenience. Data analysis performed using the statistical program Statistical Package for The Social Sciences (SPSS 15.0). The results show a prevalence of female caregivers, with an education level corresponding to secondary school and with parental relationship with the child. Most participants claim to be consistent and honest people, capable of overcoming barriers, considering that the first step towards solving the problems begin with the desire to solve them, by demonstrating awareness and involvement in the critical analysis of their private lives in order to understand the oppressive surrounding causes and develop strategies for solving problems. They show an acceptable life quality, good health, satisfaction with personal life and family balance. They also consider that they control the health condition of the child and regard as "Good" the experience of caring for a child with Special Health Care Needs.
Interventions of health care providers have been encouraged towards the recognition of the participation of families in child care. However, despite family-focused care being discussed and defended since long, its practical application still embraces today an array of challenges, including the understanding of health care needs of the child/family within a dynamic developing environment as well as health care provided at home. The adjustment of roles of family caregivers mentioned above, when related to parental condition incited the investigator the willingness to understand the difficulties and needs experienced by parents caring for children with Special Health Care Needs. An exploratory, cross-sectional study was carried out from a quantitative point of view through the application of a socio-demographic questionnaire consisting of a set of issues, psycho-sociological indices and scales applied to a group of individuals, main caregivers of children with Special Health Care Needs assigned to the Núcleo Regional de Faro da Associação Portuguesa de Paralisia Cerebral (Faro Regional Centre of the Portuguese Association of Cerebral Palsy) and is a non-probabilistic sample of convenience. Data analysis performed using the statistical program Statistical Package for The Social Sciences (SPSS 15.0). The results show a prevalence of female caregivers, with an education level corresponding to secondary school and with parental relationship with the child. Most participants claim to be consistent and honest people, capable of overcoming barriers, considering that the first step towards solving the problems begin with the desire to solve them, by demonstrating awareness and involvement in the critical analysis of their private lives in order to understand the oppressive surrounding causes and develop strategies for solving problems. They show an acceptable life quality, good health, satisfaction with personal life and family balance. They also consider that they control the health condition of the child and regard as "Good" the experience of caring for a child with Special Health Care Needs.