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Abstract(s)
Enquadramento: A Hemofilia e o seu tratamento influenciam a vida diária das crianças e
família e têm um impacto na sua qualidade de vida. A hemofilia é uma doença de tendência
hemorrágica, ligada ao cromossoma X, que afeta predominantemente os homens. O seu
tratamento consiste na reposição do fator em falta, que se preconiza ser sob a forma de
profilaxia, objetivando a prevenção de sequelas. O enfermeiro de referência está sempre
presente na vida da criança portadora de Hemofilia, promovendo a sua autonomia e
incrementando a qualidade de vida e é expectável que possua especialização em saúde
infantil e pediátrica. A qualidade de vida percebida pelos pais fornece indicadores objetivando
a melhoria dos cuidados.
Objetivos: Refletir sobre o percurso formativo para aquisição de competências
especializadas em enfermagem de saúde infantil e pediátrica; caracterizar a qualidade de vida
da criança portadora de hemofilia, percebida pelos pais; conhecer a satisfação dos pais com
o papel do enfermeiro de referência, na promoção da qualidade de vida da criança portadora
de hemofilia.
Metodologia: Realização de estágios de pediatria, neonatologia e saúde infantil e pediátrica.
Em termos do estudo empírico trata-se de um estudo misto, envolvendo uma amostra de 27
pais de crianças dos 0 aos 18 anos, inscritos na APH. Como instrumento de recolha de dados,
optou-se por um questionário ad hoc, constituído por respostas abertas e fechadas, com base
na revisão da literatura e em questionários de avaliação da qualidade de vida das crianças e
cuidadores, revisto por um conjunto de peritos.
Resultados: Na aquisição de competências como enfermeira especialista em saúde infantil
e pediátrica foi integrado a assistência à criança/jovem e a família, na maximização da sua
saúde, passando pelo cuidado da díade em situações de especial complexidade e prestando
cuidados específicos em resposta às necessidades do ciclo de vida e de desenvolvimento da
criança e do jovem, responsabilidade ética e legal, melhoria continua da qualidade, gestão
dos cuidados e responsabilidade pelas aprendizagens profissionais. A média de idades das
crianças é 8,37(± 4,82) anos, tendo a maioria como cuidadores os pais. A maioria das crianças
(85,2%) faz tratamento sob profilaxia, 22,2% crianças com inibidores, 51,9% teve uma ou mais
hemorragias. Em 51,9% das crianças com articulações alvo, o tornozelo é a articulação mais
afetada, apenas uma criança refere ter limitações. Metade das crianças (51,9%), segundo os
relatos dos pais, não praticam desporto. Das 13 crianças com idade superior ou igual a nove
anos, apenas uma autoadministra fator. A qualidade de vida da criança percebida pelos pais
é boa, sendo a profilaxia o fator chave, conferindo qualidade de vida e permitindo à criança
ter uma vida normal pela diminuição das intercorrências. Para alem da profilaxia, os pais
consideram como fatores promotores da qualidade de vida, a criança ser normal e feliz, sem
limitações. A maioria dos pais (70,4%) referem que estão muito satisfeitos com o papel do
enfermeiro de referência, pela importância na relação de ajuda, nos ensinos e
acompanhamento, promovendo a sua autonomia. Quanto à informação dada pelo enfermeiro
de referência constatamos que 61% dos pais estão muito satisfeitos e 7,4% estão muito pouco
satisfeitos quer com a satisfação da informação quer com acompanhamento, pela não
presença do enfermeiro de referência, existindo um enfermeiro de apoio. Os pais identificam
os sentimentos e sabem como atuar perante eventos hemorrágicos, recorrendo a
mecanismos de coping.
Conclusão: O referencial teórico que deu sustento ao desenvolvimento dos estágios foi a
teoria de conforto Kolcaba e que está diretamente relacionado com a qualidade de vida
relacionada com a saúde. A qualidade de vida das crianças percebida pelos pais é boa, sendo
o fator chave a profilaxia. A valorização do papel de enfermeiro é elevada, ratificada pelo
empoderamento e a literacia manifestada pelos pais e que se reflete na satisfação com os
cuidados, a informação e o acompanhamento.
Palavras-chave: qualidade de vida; pais; crianças; hemofilia A e B; perceção; enfermeiro de
referência.
Background: Hemophilia and its treatment influence the daily life of children and families and have an impact on their quality of life. Hemophilia is an X-linked, bleeding-prone disease that predominantly affects men. Its treatment consists of replacing the missing factor, which is recommended in the form of prophylaxis, with the aim of preventing sequelae. The primary nurse is always present in the life of the child with Hemophilia, promoting autonomy and increasing the quality of life and is expected to have expertise in child and pediatric health. The quality of life perceived by parents provides indicators aimed at improving care. Objectives: Reflect on the training path for acquiring specialized skills in child and pediatric health nursing. To characterize the quality of life of children with hemophilia, as perceived by the parents; to Know the satisfaction of parents with the role of the primary nurse, in promoting the quality of life of children with hemophilia. Methodology: Internships in pediatrics, neonatology and child and pediatric health. In terms of the empirical study, it is a study It is a mixed study, involving a sample of 27 parents of children from zero to 18 years old, enrolled in the APH. As a data collection instrument, we chose a had hoc questionnaire with open and closed answers, carried out ad hoc, based on the literature review and on questionnaires to assess the quality of life of children and caregivers, reviewed by a group of experts. Results: In the acquisition of skills as a specialist nurse in child and pediatric health, assistance to the child/young person and the family was integrated, in the maximization of their health, passing through the care of the dyad in situations of special complexity and providing specific care in response to the needs of the cycle. life and development of children and young people, ethical and legal responsibility, continuous quality improvement, care management and responsibility for professional learning. The children's mean age is 8.37(± 4.82) years. The majority 85.2% of the children are treated under prophylaxis, 22.2% children with inhibitors, 51.9% had one or more bleedings. In 51.9% of children with target joints, the ankle is the most affected joint, with only one child reporting limitations. Half of the children (51,9%), according to parents´ stories, do not practice sports. Of the 13 children aged 9 years or over, only one self-administered a factor. The child's quality of life perceived by the parents is good, with prophylaxis being the key factor, providing quality of life, allowing the child to have a normal life by reducing intercurrences. In addition to prophylaxis, parents consider as factors that promote quality of life, the child being normal and happy, without limitations. Most parents (70.4%) refer that are very satisfied with the role of the primary nurse, for the importance in the helping relationship, in teaching and monitoring, promoting their autonomy. Regarding the information given by the primary nurse, we found that 61% of parents are very satisfied, however 7.4% are very dissatisfied either with the satisfaction of the information or with the follow-up, due to the absence of the primary nurse, with a support nurse. Parents identify feelings and know how to act in the face of bleeding events, using coping mechanisms. Conclusion: The theoretical framework that supported the development of the internships was the Kolcaba comfort theory, which is directly related to health-related quality of life.The quality of life of children perceived by parents is good, with prophylaxis being the key factor. The appreciation of the role of nurses is high, ratified by the empowerment and literacy expressed by parents, leading to their satisfaction, and which is reflected in satisfaction with care, information and follow-up. Keywords: quality of life; parents; children; hemophilia A and B; perception; primary nurse.
Background: Hemophilia and its treatment influence the daily life of children and families and have an impact on their quality of life. Hemophilia is an X-linked, bleeding-prone disease that predominantly affects men. Its treatment consists of replacing the missing factor, which is recommended in the form of prophylaxis, with the aim of preventing sequelae. The primary nurse is always present in the life of the child with Hemophilia, promoting autonomy and increasing the quality of life and is expected to have expertise in child and pediatric health. The quality of life perceived by parents provides indicators aimed at improving care. Objectives: Reflect on the training path for acquiring specialized skills in child and pediatric health nursing. To characterize the quality of life of children with hemophilia, as perceived by the parents; to Know the satisfaction of parents with the role of the primary nurse, in promoting the quality of life of children with hemophilia. Methodology: Internships in pediatrics, neonatology and child and pediatric health. In terms of the empirical study, it is a study It is a mixed study, involving a sample of 27 parents of children from zero to 18 years old, enrolled in the APH. As a data collection instrument, we chose a had hoc questionnaire with open and closed answers, carried out ad hoc, based on the literature review and on questionnaires to assess the quality of life of children and caregivers, reviewed by a group of experts. Results: In the acquisition of skills as a specialist nurse in child and pediatric health, assistance to the child/young person and the family was integrated, in the maximization of their health, passing through the care of the dyad in situations of special complexity and providing specific care in response to the needs of the cycle. life and development of children and young people, ethical and legal responsibility, continuous quality improvement, care management and responsibility for professional learning. The children's mean age is 8.37(± 4.82) years. The majority 85.2% of the children are treated under prophylaxis, 22.2% children with inhibitors, 51.9% had one or more bleedings. In 51.9% of children with target joints, the ankle is the most affected joint, with only one child reporting limitations. Half of the children (51,9%), according to parents´ stories, do not practice sports. Of the 13 children aged 9 years or over, only one self-administered a factor. The child's quality of life perceived by the parents is good, with prophylaxis being the key factor, providing quality of life, allowing the child to have a normal life by reducing intercurrences. In addition to prophylaxis, parents consider as factors that promote quality of life, the child being normal and happy, without limitations. Most parents (70.4%) refer that are very satisfied with the role of the primary nurse, for the importance in the helping relationship, in teaching and monitoring, promoting their autonomy. Regarding the information given by the primary nurse, we found that 61% of parents are very satisfied, however 7.4% are very dissatisfied either with the satisfaction of the information or with the follow-up, due to the absence of the primary nurse, with a support nurse. Parents identify feelings and know how to act in the face of bleeding events, using coping mechanisms. Conclusion: The theoretical framework that supported the development of the internships was the Kolcaba comfort theory, which is directly related to health-related quality of life.The quality of life of children perceived by parents is good, with prophylaxis being the key factor. The appreciation of the role of nurses is high, ratified by the empowerment and literacy expressed by parents, leading to their satisfaction, and which is reflected in satisfaction with care, information and follow-up. Keywords: quality of life; parents; children; hemophilia A and B; perception; primary nurse.
Description
Keywords
Atitude perante a saúde Criança Enfermagem pediátrica Enfermagem primária Hemofilia A Hemofilia B Pais Promoção da saúde Qualidade de vida Attitude to health Child Health promotion Hemophilia A Hemophilia B Parents Pediatric nursing Primary nursing Quality of life