Cuidar De Crianças Com Necessidades Especiais De Saúde: Do Diagnóstico Às Demandas De Cuidados No Domicílio

Pimenta, Erika Acioli Gomes; Wanderley, Luciane Soares de Lima; Soares, Camila Carla Dantas; Delmiro, Andrezza Rayana da Costa Alves

doi:10.34117/bjdv6n8-311

Cited by 6 publications

(9 citation statements)

References 15 publications

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“…First, our sample size was restricted to four SCD clinics in one United States geographic region; our results may not be generalizable to pediatric hematology outpatient clinics in non-United States contexts, though research in international settings has reported on the efficacy of community approaches to SCD management [ 36 – 38 ]. Two qualitative studies, in Brazil and Benin, acknowledged the need for all-encompassing family and community support as best practices for the management of sickle cell disease [ 37 , 39 ].…”

Section: Discussionmentioning

confidence: 99%

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives

Loo

Brochier

Wexler

et al. 2021

BMC Health Serv Res

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Background The purpose of this study was to assess pediatric hematology clinic staff’s perspectives regarding barriers and facilitators in addressing unmet basic needs for children with sickle cell disease (SCD). Methodology Six focus groups were held at four urban pediatric hematology clinics in the Northeastern region of the United States from November to December 2019. Discussion questions were developed to align with the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) implementation science framework, focusing on the domains of context and recipient and how clinics address adverse social determinants of health (SDoH) in their patient populations. A summative content analytical approach was taken to identify major themes in the data. Results We discerned the following themes: (1) families of children with SCD experience numerous unmet basic needs; (2) clinic staff believed they had a role to play in addressing these unmet basic needs; (3) staff felt their ability to address families’ unmet basic needs depended upon caregivers’ capacity to act on staff’s recommendations; and (4) clinic staff’s ability to address these needs was limited by organizational and systemic factors beyond their control. Conclusions These findings have important implications for how best to address adverse SDoH for this vulnerable pediatric population so that urban-based pediatric hematology clinics can more equitably support families.

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Section: Discussionmentioning

confidence: 99%

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives

Loo

Brochier

Wexler

et al. 2021

BMC Health Serv Res

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“…The vulnerabilities of families of patients who require complex and differentiated care for a long period have hospital discharge as a milestone, considering the various changes implemented in family daily life. Studies identify that, at the time of discharge, there is a transfer of responsibility for care to the family who do not have the necessary knowledge to exercise this care in the home environment ( 2 , 7 , 16 ) .…”

Section: Discussionmentioning

confidence: 99%

“…Over time, technological and scientific advances in the field of health, especially in neonatal and pediatric wards, have contributed to increase the survival rates of premature children, those with low birth weight, congenital malformations and chronic diseases ( 1 ) . As a result of this process, there was an increase in demands for differentiated care and dedication from families to care for these children ( 2 ) .…”

Section: Introductionmentioning

confidence: 99%

Mental health of parents of children and adolescents who require special health care

Nonose,

Silva,

Neves

et al. 2024

Rev. Bras. Enferm.

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Objective: To identify the manifestations presented by parents of children and adolescents who require special health attention that can impact their mental health. Methods: exploratory, qualitative research, based on the concept of vulnerability, with data collection carried out through interviews with 18 parents of children and adolescents with special health care needs, hospitalized in the pediatric ward of a hospital in Paraná, between May/2017 and May/ 2018. Data analyzed by inductive thematic analysis. Results: parents experienced situations of vulnerability when providing care at home, with repercussions on their mental health, expressed by manifestations of lack of protection, anxiety and depression. Final considerations: It is important that health professionals seek to expand actions to promote care and reduce situations that generate threats, insecurities, concerns and damage to the health of parents, which can impact and further weaken care for children and adolescents who need attention especially health.

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“…Los niños y sus familias atraviesan momentos de inseguridad y miedo desde la búsqueda del diagnóstico, durante y después, por la incertidumbre de cómo será la vida a partir de entonces (4) . Llegar al diagnóstico de la condición crónica es, en general, difícil y lleva mucho tiempo.…”

Section: Introductionunclassified

Adaptação da família: do diagnóstico ao tratamento da condição crônica da criança

Milbrath

Gabatz²,

Vaz³

et al. 2022

Enf Global

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Objective: To know the adaptation process experienced by families from diagnosis to treatment of the child’s chronic condition.Material and method: This was a multicenter, qualitative study. Data presented refer to the collection carried out in the municipality of Pelotas, state of Rio Grande do Sul, in 2019. Participants were fifteen family members/caregivers of children with chronic conditions admitted to pediatric units in hospitals. Semi-structured interviews were applied and the information was analyzed through thematic analysis and interpreted using the theoretical framework: The Nursing Theory – Roy’s adaptation model.Results: The group of participants was composed of ten mothers, three fathers and two grandmothers. Family members follow a trajectory in search of the child’s diagnosis, facing difficulties in this experience, such as the impact of the diagnosis, risks, and repercussions of the disease, as well as the lack of information and ineffective communication between professionals and family members, in addition to difficulties in moving to the treatment site. Final considerations: It is necessary to critically reflect on the approach to families of children with chronic conditions, aiming at identifying the situations of vulnerability faced so that professionals can serve them, striving for comprehensive care based on their demands. Furthermore, it is essential to adopt effective communication, improving the work process to stimulate dialogue and understanding with families about the diagnosis, risks, treatment, and consequences of the child’s chronic disease. Objetivo: Conocer la adaptación de las familias desde el diagnóstico hasta el tratamiento de la enfermedad crónica del niño.Material y Método: Investigación cualitativa, proveniente de un estudio multicéntrico, los datos aquí presentados se refieren a la recolección realizada en la ciudad de Pelotas/RS, en el año de 2019. Participaron de la investigación quince familiares/cuidadores de niños con enfermedades crónicas ingresados en unidades pediátricas de hospitales. Se realizaron entrevistas semiestructuradas y la información fue analizada mediante análisis temático e interpretada por el marco teórico: La Teoría de Enfermería – modelo de adaptación de Roy.Resultados: De los participantes de la investigación, diez eran madres, tres padres y dos abuelas. Los familiares siguen una trayectoria en busca del diagnóstico del niño, enfrentando dificultades en esta experiencia, como el impacto del diagnóstico, los riesgos y repercusiones de la enfermedad, así como la falta de información y la comunicación ineficaz entre profesionales y familiares, además de las dificultades para pasar a la finalización del tratamiento. Consideraciones finales: Es necesario reflexionar críticamente sobre el acercamiento a las familias de niños con enfermedades crónicas, con el objetivo de identificar las situaciones de vulnerabilidad que enfrentan para que los profesionales puedan atenderlas, buscando una atención integral a partir de sus demandas. Además, es fundamental adoptar una comunicación eficaz, mejorando el proceso de trabajo para mejorar el diálogo y el entendimiento con las familias sobre el diagnóstico, los riesgos, el tratamiento y las repercusiones de la enfermedad crónicas del niño. Objetivo: Conhecer a adaptação das famílias do diagnóstico ao tratamento da condição crônica da criança.Material e métodos: Pesquisa qualitativa, oriunda de estudo multicêntrico, os dados aqui apresentados referem-se a coleta feita na cidade de Pelotas/RS, no ano de 2019. Participaram da pesquisa 15 familiares/cuidadores de crianças com condições crônicas internadas em unidades de pediatria de hospitais do município. Foram realizadas entrevistas semiestruturadas e as informações foram analisadas por meio da análise temática e interpretadas pelo referencial teórico: A Teoria de enfermagem – O modelo de adaptação de Roy.Resultados: Dos participantes da pesquisa dez eram mães, três pais e duas avós. Os familiares realizam uma trajetória em busca do diagnóstico da criança, enfrentando dificuldades nessa vivência, tais como impacto diante do diagnóstico, riscos e repercussões da doença, assim como a falta de informações e comunicação ineficaz entre profissionais e familiares, além de dificuldade no deslocamento para realização do tratamento. Considerações finais: É necessário refletir criticamente sobre a abordagem às famílias das crianças com condições crônicas, visando a identificação das situações de vulnerabilidade enfrentadas por essas para que os profissionais possam atendê-las primando pela integralidade do cuidado com base em suas demandas. Ademais, é imprescindível adotar uma comunicação eficaz, aprimorando o processo de trabalho no sentido de melhorar o diálogo e o entendimento para com as famílias sobre o diagnóstico, os riscos, o tratamento e as repercussões advindas da doença crônica da criança.

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Cuidar De Crianças Com Necessidades Especiais De Saúde: Do Diagnóstico Às Demandas De Cuidados No Domicílio

Abstract: Cuidar de crianças com necessidades especiais de saúde: Do diagnóstico às demandas de cuidados no domicílio Caring for children with special health needs: From diagnosis to home care demands

Cited by 6 publications

References 15 publications

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives

Addressing unmet basic needs for children with sickle cell disease in the United States: clinic and staff perspectives

Mental health of parents of children and adolescents who require special health care

Adaptação da família: do diagnóstico ao tratamento da condição crônica da criança

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