A experiência de uma família que vivencia a condição crônica por anemia falciforme em dois adolescentes

Weis, Margani Cadore; Barbosa, Mariana Roberta C.; Bellato, Roseney; Araújo, Laura Filomena Santos de; Silva, Alessandra Hoelscher

doi:10.1590/s0103-11042013000400007

Cited by 9 publications

(13 citation statements)

References 11 publications

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“…This is mainly the result of insufficient knowledge on the part of professionals 3 which affects assistance. 2 …”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, these patients may not be aware that PHC activities are aimed at prevention, promotion of health, and continuous care, and may even have sought the service previously and not obtained an effective solution to their problem at that time. 1–3,6 …”

Section: Discussionmentioning

confidence: 99%

“…Studies have indicated the need for PHC to better assume its role as the gateway to the health care network, as well as to create connections with patients with certain diseases such as mental disorders, 10,13 tuberculosis, 15 hanseniasis, 16 and SCD. 1–3,8 Partial inclusion, or even the exclusion of these diseases from the PHC care routine results from the fact that treatment of these diseases has historically taken place in secondary care represented by specialized centers. Even after the decentralization of care for hanseniasis, tuberculosis, and mental health to PHC, professionals still hold the old view that monitoring and control continue to be the responsibility of specialized centers, and not of PHC.…”

Section: Discussionmentioning

confidence: 99%

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Perception of primary care doctors and nurses about care provided to sickle cell disease patients

Gomes

Barbosa

Vieira

et al. 2015

Revista Brasileira de Hematologia e Hemoterapia

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ObjectiveTo analyze the perception of primary care physicians and nurses about access to services and routine health care provided to sickle cell disease patients.MethodsThis descriptive exploratory study took a qualitative approach by surveying thirteen primary care health professionals who participated in a focus group to discuss access to services and assistance provided to sickle cell disease patients. The data were submitted to thematic content analysis.ResultsAccess to primary care services and routine care for sickle cell disease patients were the categories that emerged from the analysis. Interaction between people with sickle cell disease and primary care health clinics was found to be minimal and limited mainly to scheduling appointments. Patients sought care from the primary care health clinics only in some situations, such as for pain episodes and vaccinations. The professionals noted that patients do not recognize primary care as the gateway to the system, and reported that they feel unprepared to assist sickle cell disease patients.ConclusionIn the perception of these professionals, there are restrictions to accessing primary care health clinics and the primary care assistance for sickle cell disease patients is affected.

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“…This is mainly the result of insufficient knowledge on the part of professionals 3 which affects assistance. 2 …”

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

See 1 more Smart Citation

Perception of primary care doctors and nurses about care provided to sickle cell disease patients

Gomes

Barbosa

Vieira

et al. 2015

Revista Brasileira de Hematologia e Hemoterapia

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“…It is believed that the family experience is similar to that of caregivers of children with other chronic illnesses, who report that the experience of becoming ill consists of several stages, such as fear of death, lack of family support, financial hardship until the adaptation to the new condition. 5 Due to it being a challenging experience, it can provoke emotional tensions that will impact on the quality of life of the parents who develop different ways of managing the child's health. 6 Carers are not only child care providers, but child care specialists due to their own experiences.…”

Section: Introductionmentioning

confidence: 99%

Criança Em Tratamento Conservador Renal: Experiências Das Cuidadoras Familiares

Lise

Schwartz²,

Milbrath³

et al. 2017

Texto contexto - enferm.

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Objective: to understand the experience of the family caregiver of the child in conservative renal treatment.Method: a qualitative study. Participants consisted of 11 family caregivers of children in conservative renal treatment in the South of Brazil, during the period of April to August of 2015. For the collection of the information, semi-structured interviews were carried out, whose data were recorded. For the analysis of the information, transcription of the interviews was used, codification, and organization of the categories according to the scholars.Results: the data allowed the construction of five categories: discovering the disease, dealing with the disease, realization of the child's health; living life for the child; and realizing the existence of support.Conclusion: the experience of family caregivers is related to affective, social, professional and economic changes. DESCRIPTORS:Caregivers. Child. Nursing. Family. Chronic renal failure. CRIANÇA EM TRATAMENTO CONSERVADOR RENAL: EXPERIÊNCIAS DAS CUIDADORAS FAMILIARES RESUMOObjetivo: conhecer a experiência da cuidadora familiar da criança em tratamento conservador renal.Método: estudo qualitativo. Participaram 11 cuidadoras familiares de crianças em tratamento conservador renal no sul do Brasil, no período de abril a agosto de 2015. Para a coleta das informações foram realizadas entrevistas semiestruturadas, cujos dados foram gravados. Para análise das informações, utilizou-se transcrição das entrevistas, codificação, organização das categorias e discussão à luz de estudiosos da temática.Resultados: os dados permitiram a construção de cinco categorias: descobrindo a doença, lidando com a doença, percebendo a saúde da criança, vivendo a vida pela criança, e percebendo o apoio.Conclusão: a experiência ocorrida na vida das cuidadoras familiares está ligada à mudanças de ordem afetiva, sociais, profissionais e econômicas. DESCRITORES:Cuidadores. Criança. Enfermagem. Família. Insuficiência renal crônica.http://dx.doi.org/10.1590/0104-07072017001110016Texto Contexto Enferm, 2017; 26(3):e1110016Lise F, Schwartz E, Milbrath VM, Santos BP, Feijó AM, Garcia RP 2/9 NIÑO EN TRATAMIENTO CONSERVADOR RENAL: EXPERIENCIAS DE LAS CUIDADORAS FAMILIARES RESUMENObjetivo: conocer la experiencia de la cuidadora familiar del niño en tratamiento conservador renal.Método: investigación cualitativa. Participaron 11 cuidadoras familiares de niños en tratamiento conservador renal del Sur de Brasil, en el periodo de abril a agosto de 2015. Para la recolección de datos fueron realizadas entrevistas semiestructuradas las cuales fueron grabadas. Para el análisis se utilizó la transcripción, la codificación, organización de categoría y la discusión a la luz de estudiosos en el tema.Resultados: los datos permitieron la construcción de cinco categorías: descubriendo la enfermedad; lidiando con la enfermedad, percibiendo la salud del niño, viviendo la vida por el niño y; percibiendo el apoyo.Conclusión: la experiencia ocurrida en la vida de las cuidadoras familiares está ligada a...

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“…In many cases, they report having suffered from prejudice and stigmatization since childhood, which can lead to lower academic achievement [20][21][22][23] . Lack of knowledge about the disease causes children and adolescents embarrassing situations due to yellow eyes (clinically known as jaundice), short stature and frail appearance, which patients often feature.…”

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confidence: 99%

O processo de consentimento livre e esclarecido nas pesquisas em doença falciforme

Valêncio

Domingos²

2016

Rev. Bioét.

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Sickle cell disease is a term that refers to a group of hemoglobinopathies associated with the presence of hemoglobin S. Occurring primarily in black population, and affecting mainly the most vulnerable, the homozygous form of the disease, sickle cell anemia, is considered an important public health problem in Brazil. Understanding scientific research as essential to promote health and improve the quality of life of people with sickle cell disease, the informed consent process should be done to overcome, as far as possible, the vulnerabilities which people with sickle cell disease are exposed to. The use of recreational resources, the transmission of collective information, the protection provided by patient associations and the continuous training of ethics in research by the professionals involved in the agreement are shown as tools for the optimization of this process. Keywords: Anemia, sickle cell. Informed consent. Ethics, research. ResumoO processo de consentimento livre e esclarecido nas pesquisas em doença falciforme Doença falciforme diz respeito a grupo de hemoglobinopatias associadas à presença da hemoglobina S. Sendo majoritária na população negra, e acometendo em sua maioria vulneráveis e vulnerados, a forma homozigota da doença -a anemia falciforme -é considerada relevante problema de saúde pública no Brasil. Entendendo a pesquisa científica como essencial para a promoção da saúde e para melhorar a qualidade de vida dos pacientes, o processo de consentimento livre e esclarecido deve ser aplicado para superar, na medida do possível, vulnerabilidades a que as pessoas com doença falciforme estão expostas. Recursos lúdicos, transmissão coletiva de informações, proteção conferida pelas associações de pacientes e a formação permanente em ética em pesquisa por parte dos profissionais que aplicam o consentimento são indicados como ferramentas para otimizar esse processo. Palavras-chave: Anemia falciforme. Consentimento livre e esclarecido. Ética em pesquisa. ResumenEl proceso de consentimiento informado en investigaciones sobre la enfermedad de células falciformes La enfermedad de células falciformes es un término que se refiere a un grupo de hemoglobinopatías asociado con la presencia de la hemoglobina S. La forma homocigótica del gen de la enfermedad se presenta sobre todo en la población negra y se considera un problema importante de salud pública en Brasil, que afecta sobre todo a vulnerables y vulnerados. Entendiendo a la investigación científica como esencial para la promoción de la salud y para el aumento de la calidad de vida de las personas con enfermedad de células falciformes, el proceso de consentimiento libre e informado debe ser aplicado para superar, en la medida de lo posible, las vulnerabilidades a las que las personas con la enfermedad de células falciformes están expuestas. El uso de los recursos recreativos, la transmisión de información colectiva, la protección que ofrecen las asociaciones de pacientes y la formación continua en ética en investigación por parte de los profesion...

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A experiência de uma família que vivencia a condição crônica por anemia falciforme em dois adolescentes

Cited by 9 publications

References 11 publications

Perception of primary care doctors and nurses about care provided to sickle cell disease patients

Perception of primary care doctors and nurses about care provided to sickle cell disease patients

Criança Em Tratamento Conservador Renal: Experiências Das Cuidadoras Familiares

O processo de consentimento livre e esclarecido nas pesquisas em doença falciforme

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