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Crianças com doenças raras: impacto na família
| Name: | Description: | Size: | Format: | |
|---|---|---|---|---|
| PG_30193 | 877.13 KB | Adobe PDF |
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Abstract(s)
A realização deste projeto de graduação, realizado no âmbito do curso de Licenciatura em Enfermagem na Universidade Fernando Pessoa, visa a obtenção do grau de licenciada em Enfermagem.
As doenças raras têm sido um tema pouco abordado tanto na comunidade académica, como nos media. As informações são escassas, os tratamentos sem cura e a ansiedade dos pais dispara quando se deparam com a palavra “rara”. Porque, para eles, o que é raro é difícil, a nível de tratamentos, informação clínica, prognóstico e esperança de vida. A nível académico, as doenças raras são abordadas junto dos estudantes de forma muito leve, ou seja, não o suficiente para saberem lidar com estas crianças e os seus pais. Este trabalho é uma tentativa de chegar á comunidade académica e dar a conhecer o que sentem estes pais, que guerras travam todos os dias e que dificuldades ultrapassaram e, assim, capacitá-los para lidarem com eles e compreenderem a sua luta.
Este trabalho intitulado “Crianças com doenças raras: Impacto na família” tem como objetivo geral o estudo do impacto que o diagnóstico de uma doença rara poderá ter numa família. No fundo, este projeto visa compreender o que sente a família, nomeadamente os pais, que enfrentam um diagnóstico tão receado como este, baseado nas suas vivências, receios e perceção.
Assim, foram delineados os objetivos deste estudo: Identificar o impacto que o diagnóstico teve na vida dos pais da criança e da família; Averiguar quais as maiores dificuldades que enfrentam, devido à patologia dos seus filhos; Conhecer as preocupações que têm e como perspetivam o futuro da criança e avaliar a necessidade e o tipo de apoio que mais precisa.
Para colher os dados foram realizadas entrevistas não-estruturadas que depois de transcritas foram posteriormente analisadas e interpretadas. Os resultados deste estudo demonstraram que as famílias sofrem grandes alterações na sua vida quotidiana aquando do nascimento de uma criança portadora de patologia rara. O impacto económico, psicológico e físico é uma realidade comum a todas as famílias apesar de com proporções diferentes de família para família. É de salientar, que o momento do diagnóstico é vivido com muita preocupação e angústia mas após o impacto inicial, existe um sentimento ambivalente, as mães sentem receio quanto ao futuro dos seus filhos mas manifestam um grande amor por estes e esperança na sua recuperação ou numa excelente qualidade de vida.
The completion of this undergraduate project, carried out under the Nursing Undergraduate course at the Fernando Pessoa University, aims to obtain a degree in Nursing. Rare diseases have been little discussed in the academic community as well as in the media. Information is scarce, treatments unhealed and parents' anxiety triggers when they come across the word "rare." Because, for them, what is rare is difficult, in terms of treatments, clinical information, prognosis and life expectancy. At the academic level, rare diseases are addressed very lightly to students, that is, not enough to deal with these children and their parents. This work is an attempt to reach out to the academic community and make known what these parents feel, what wars they wage every day and what difficulties they have overcome, and thus enable them to deal with them and to understand their struggle. This paper entitled "Children with rare diseases: Impact on the family" has as general objective the study of the impact of rare disease on the family nucleus, the impact that the diagnosis of a rare disease may have on a family. At bottom, this project aims to understand what the family feels, namely the parents, who face a diagnosis so dreaded as this, based on their experiences, fears and perception. Thus, the objectives of this study were outlined: Identify the impact that the diagnosis had on the life of the parents of the child and the family; Find out what the greatest difficulties they face due to the pathology of their children; Know the concerns that have and how to perspective the future of the child and assess the need and type of support that needs most. In order to collect the data, unstructured interviews were carried out which, after being transcribed, were later analyzed and interpreted. The results of this study demonstrated that families undergo major changes in their daily lives at the birth of a child with rare pathology. The economic, psychological and physical impact is a reality common to all families, although with different proportions from family to family. It is important to point out that the moment of diagnosis is lived with a lot of worry and anxiety but after the initial impact there is an ambivalent feeling, mothers are afraid of the future of their children but show a great love for them and hope in their recovery or in an excellent quality of life.
The completion of this undergraduate project, carried out under the Nursing Undergraduate course at the Fernando Pessoa University, aims to obtain a degree in Nursing. Rare diseases have been little discussed in the academic community as well as in the media. Information is scarce, treatments unhealed and parents' anxiety triggers when they come across the word "rare." Because, for them, what is rare is difficult, in terms of treatments, clinical information, prognosis and life expectancy. At the academic level, rare diseases are addressed very lightly to students, that is, not enough to deal with these children and their parents. This work is an attempt to reach out to the academic community and make known what these parents feel, what wars they wage every day and what difficulties they have overcome, and thus enable them to deal with them and to understand their struggle. This paper entitled "Children with rare diseases: Impact on the family" has as general objective the study of the impact of rare disease on the family nucleus, the impact that the diagnosis of a rare disease may have on a family. At bottom, this project aims to understand what the family feels, namely the parents, who face a diagnosis so dreaded as this, based on their experiences, fears and perception. Thus, the objectives of this study were outlined: Identify the impact that the diagnosis had on the life of the parents of the child and the family; Find out what the greatest difficulties they face due to the pathology of their children; Know the concerns that have and how to perspective the future of the child and assess the need and type of support that needs most. In order to collect the data, unstructured interviews were carried out which, after being transcribed, were later analyzed and interpreted. The results of this study demonstrated that families undergo major changes in their daily lives at the birth of a child with rare pathology. The economic, psychological and physical impact is a reality common to all families, although with different proportions from family to family. It is important to point out that the moment of diagnosis is lived with a lot of worry and anxiety but after the initial impact there is an ambivalent feeling, mothers are afraid of the future of their children but show a great love for them and hope in their recovery or in an excellent quality of life.
Description
Projeto de Graduação apresentado à Universidade Fernando Pessoa como parte dos requisitos para obtenção do grau de Licenciada em Enfermagem
Keywords
Família Doenças raras Impacto Apoio Family Rare diseases Impact Support