Advisor(s)
Abstract(s)
Este trabalho aborda as implicações da Doença Rara na vida familiar e escolar
das crianças/jovens, sob o ponto de vista parental.
Pretendemos divulgar a temática das Doenças Raras, concretamente no meio
escolar, considerando que o conhecimento propicia melhores práticas educativas.
Interessou-nos conhecer as necessidades familiares, bem como o impacto positivo e
negativo da Doença Rara na família. Uma vez que os sistemas da família e da escola
partilham a educação da criança/jovem, procuramos também conhecer as perceções
parentais acerca dos serviços educativos.
Para tal, elaborámos um questionário com contributos de outros já existentes,
nacionais e estrangeiros (Genetic Syndrome Stressors Scale, Positive Contributions
Scale, Questionário sobre as Necessidades Familiares e Parents’ Perceptions of
Educational Services for Children with a Chronic Illness) e dirigimo-lo a pais de
crianças/jovens com Doença Rara e Necessidades Educativas Especiais (n=55),
pertencentes à Associação Raríssimas.
Os resultados revelam que a amostra apresenta elevados índices de stress
parental por ter a seu cargo um filho com Doença Rara, devido a fatores intrínsecos e
extrínsecos à criança, com claros indicadores relacionados com a raridade da patologia.
No entanto, independentemente do stress percebido, estes pais identificam contribuições
positivas, encarando o filho como uma mais-valia na vida pessoal e familiar.
Verificámos ainda que as necessidades de informação e as financeiras são as mais
sentidas pelas famílias e que as preocupações relativamente à escolaridade dos filhos se
relacionam sobretudo com o bem-estar emocional e social destes na escola. Na
generalidade, os pais consideram que o serviço educativo prestado é satisfatório e que a
relação pais-professores se pauta pela parceria e partilha. No entanto, não se sentem
muito seguros de que a escola responda adequadamente às necessidades médicas do
filho. Apesar das limitações, este estudo poderá servir de mote a futuras abordagens que
visem o conhecimento e a divulgação da problemática das Doenças Raras.
This paper approaches the issue of the implications of Rare Disease for family and school life of children/young people from the parental point of view. We aim to disclose the subject of Rare Diseases, particularly in the school environment, considering that knowledge provides better educational practices. We intended to identify the family needs as well as the positive and negative impact of rare disease in the family. As family and school share the upbringing of the child/young person, we also intend to study the parental perceptions of their child’s educational services. To do so, we have designed a questionnaire with inputs from others already existing, both national and from other countries (Genetic Syndrome Stressors Scale, Positive Contributions Scale, Questionnaire on Family Needs and Parents' Perceptions of Educational Services for Children with Chronic Illness) and we administered it to parents of children/young people with Rare Diseases and Special Educational Needs (n = 55), belonging to Associação Raríssimas. Results reveal that parents who take care of a child with a Rare Disease show high levels of parental stress, due to factors intrinsic and extrinsic to the child, with clear indicators related to the rarity of the condition. However, regardless the perceived stress, these parents identify positive contributions, seeing their child as a plus in their personal and family life. We also found that the needs of information and the financial needs and are ones most felt by families and that their concerns about their children’s education mainly regard their emotional and social wellbeing in school. Overall, parents feel that the educational service provided is satisfactory and that the parent-teacher relationship is characterized by cooperation and sharing. However, parents do not feel very confident about the school properly responding to the medical needs of the child. Despite the limitations, this study could serve as a starting point for future approaches aiming the knowledge and the disclosure and the issue of Rare Diseases.
This paper approaches the issue of the implications of Rare Disease for family and school life of children/young people from the parental point of view. We aim to disclose the subject of Rare Diseases, particularly in the school environment, considering that knowledge provides better educational practices. We intended to identify the family needs as well as the positive and negative impact of rare disease in the family. As family and school share the upbringing of the child/young person, we also intend to study the parental perceptions of their child’s educational services. To do so, we have designed a questionnaire with inputs from others already existing, both national and from other countries (Genetic Syndrome Stressors Scale, Positive Contributions Scale, Questionnaire on Family Needs and Parents' Perceptions of Educational Services for Children with Chronic Illness) and we administered it to parents of children/young people with Rare Diseases and Special Educational Needs (n = 55), belonging to Associação Raríssimas. Results reveal that parents who take care of a child with a Rare Disease show high levels of parental stress, due to factors intrinsic and extrinsic to the child, with clear indicators related to the rarity of the condition. However, regardless the perceived stress, these parents identify positive contributions, seeing their child as a plus in their personal and family life. We also found that the needs of information and the financial needs and are ones most felt by families and that their concerns about their children’s education mainly regard their emotional and social wellbeing in school. Overall, parents feel that the educational service provided is satisfactory and that the parent-teacher relationship is characterized by cooperation and sharing. However, parents do not feel very confident about the school properly responding to the medical needs of the child. Despite the limitations, this study could serve as a starting point for future approaches aiming the knowledge and the disclosure and the issue of Rare Diseases.
Description
Keywords
Doenças raras Criança/jovem Família Impacto positivo Impacto negativo Necessidades Escola Rare diseases Child/young person Family Positive impact Negative impact Needs School