Unsung heroes, flying blind—A metasynthesis of parents’ experiences of caring for children with special health‐care needs at home

Nygård, Carina; Clancy, Anne

doi:10.1111/jocn.14512

Cited by 44 publications

(53 citation statements)

References 41 publications

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“…The presence of parents also has a relevant role in the care, and modify this reality for the child during hospitalization and therapeutic procedures, it is noticeable that the family experiences moments of insecurity with the child, so it is advisable to take into account this point and humanize the assistance provided. 9 It is detailed that pain is considered a universal phenomenon, since it accompanies all phases of human development. However, pain cannot be understood only as a physical process, but must encompass psychological and social aspects in the infantile phase.…”

Section: Resultsmentioning

confidence: 99%

Percepção dos acompanhantes das crianças hospitalizadas acerca do brinquedo terapêutico

Ferreira

Silva

Santos

et al. 2018

Rev enferm UFPE on line.

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RESUMO Objetivo: identificar a percepção dos acompanhantes das crianças hospitalizadas com relação às atividades lúdicas. Método: trata-se de estudo qualitativo, de campo, descrito e exploratório, com dez acompanhantes, uutilizando-se a ferramenta Brinquedo terapêutico. Coletaram-se os dados por meio de entrevista com roteiro semiestruturado. Empregou-se a técnica de Análise de Conteúdo na modalidade Análise Categorial para análise dos dados. Resultados: elegeram-se, a partir da leitura e releitura das entrevistas, quatro categorias: << A brinquedoteca como auxílio no tratamento pediátrico >>, << Utilização do Brinquedo Terapêutico na realização dos procedimentos >>; << O brinquedo terapêutico como suporte da assistência de Enfermagem >>, << O brinquedo e a aproximação entre o profissional e a criança >>. Conclusão: considerou-se primordial que os profissionais atuantes na Pediatria desenvolvam estratégias para a utilização do brinquedo terapêutico, melhorando a assistência oferecida e como contribuição, proporcionando o atendimento mais humano e qualificado na área. Descritores: Criança Hospitalizada; Enfermagem Pediátrica; Jogos e Brinquedos; Assistência; Pediatria; Humanização da Assistência.ABSTRACTObjective: to identify the perception of the companions of hospitalized children in relation to play activities. Method: this is a qualitative, field study, descriptive and exploratory, with ten companions, using the therapeutic Toy tool. The data was collected through an interview with semi-structured script. The Content Analysis technique was used in the Categorical Analysis modality to analyze the data. Results: from the reading and re-reading of the interviews, four categories were chosen: << The toy library as an aid in the pediatric treatment >>, << Use of the Therapeutic Toy in the accomplishment of the procedures >>; << The therapeutic toy as support of the Nursing care >>, << The toy and the approach between the professional and the child >>. Conclusion: it was considered essential that professionals working in Pediatrics develop strategies for the use of therapeutic toys, improving the care offered and as a contribution, providing the most humane and qualified care in the area. Descriptors: Child, Hospitalized; Pediatric Nursing; Play and Playthings; Assistance; Pediatrics; Humanization of Assistance.RESUMEN Objetivo: identificar la percepción de los acompañantes de los niños hospitalizados con relación a las actividades lúdicas. Método: se trata de un estudio cualitativo, de campo, descrito y exploratorio, con diez acompañantes, utilizando la herramienta Juguete terapéutico. Los datos fueron recolectados por medio de una entrevista con un guión semiestructurado. Se empleó la técnica de Análisis de Contenido en la modalidad Análisis Categorial para análisis de los datos. Resultados: se eligieron, a partir de la lectura y relectura de las entrevistas, cuatro categorías: << La biblioteca de juguetes como ayuda en el tratamiento pediátrico >>, << Utilización del juguete terapéutico en la realización de los procedimientos >>; << El juguete terapéutico como soporte de la asistencia de Enfermería >>, << El juguete y el acercamiento entre el profesional y el niño >>. Conclusión: se consideró primordial que los profesionales actuantes en la Pediatría desarrollas estrategias para la utilización del juguete terapéutico, mejorando la asistencia ofrecida y como contribución, proporcionando la atención más humana y calificada en el área. Descriptores: Niño Hospitalizado; Enfermería Pediátrica; Juego e Implementos de Juego; Asistencia; Pediatria; Humanización de la Atención.

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Section: Resultsmentioning

confidence: 99%

Percepção dos acompanhantes das crianças hospitalizadas acerca do brinquedo terapêutico

Ferreira

Silva

Santos

et al. 2018

Rev enferm UFPE on line.

View full text Add to dashboard Cite

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“…Researchers in this area have predominantly focused on parental stress and the burden of care for parents of children with complex health care needs (Nygård and Clancy, 2018), whilst some have discussed the positive or existential transformation that occurs in parents and their perspectives on life, due to the experience of parenting a child with a disability (see Skinner et al 1999). Other scholars have discussed the paradox of "joy and sorrow" (Kearney and Griffin, 2001, p. 582), "distress and enrichment" (Carnevale et al 2006, p. e48) -with enrichment coming emotionally and through acquisition of new knowledge and skills, and the "benefits and burdens" (Green, 2007, p. 150) -with burdens including the isolation of being a parent of a child with complex care needs .…”

Section: Parenting Children With Complex Health Care Needsmentioning

confidence: 99%

Not a nurse but more than a mother: the everyday geographies of mothering children with complex heath care needs

Wilkinson

Bray

Carter

et al. 2020

Children's Geographies

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“…One report described an overarching theme “unsung heroes, flying blind” that illustrate aspects of the parents’ experience in caring for CSHCN and CMC. The enormous burden of care can decrease the parents’ ability to provide care, and impact the parents’ health, family functioning and the sick child’s potential health outcomes [16]. Comprehensive care oversight may improve care coordination but not health status for parents of CMC [17].…”

Section: Children With Special Health Care Needs and Medical Complmentioning

confidence: 99%

Creating a Pharmacotherapy Collaborative Practice Network to Manage Medications for Children and Youth: A Population Health Perspective

et al. 2019

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Children with special health care needs (CSHCN) use relatively high quantities of healthcare resources and have overall higher morbidity than the general pediatric population. Embedding clinical pharmacists into the Patient-Centered Medical Home (PCMH) to provide comprehensive medication management (CMM) through collaborative practice agreements (CPAs) for children, especially for CSHCN, can improve outcomes, enhance the experience of care for families, and reduce the cost of care. Potential network infrastructures for collaborative practice focused on CSHCN populations, common language and terminology for CMM, and clinical pharmacist workforce estimates are provided. Applying the results from the CMM in Primary Care grant, this paper outlines the following: (1) setting up collaborative practices for CMM between clinical pharmacists and pediatricians (primary care pediatricians and sub-specialties, such as pediatric clinical pharmacology); (2) proposing various models, organizational structures, design requirements, and shared electronic health record (EHR) needs; and (3) outlining consistent documentation of CMM by clinical pharmacists in CSHCN populations.

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Unsung heroes, flying blind—A metasynthesis of parents’ experiences of caring for children with special health‐care needs at home

Abstract: Knowledge of how parents of children with special health-care needs experience their daily lives can promote trust in nurses and guide them in their efforts to support families with children living with chronic illness.

Cited by 44 publications

References 41 publications

Percepção dos acompanhantes das crianças hospitalizadas acerca do brinquedo terapêutico

Percepção dos acompanhantes das crianças hospitalizadas acerca do brinquedo terapêutico

Not a nurse but more than a mother: the everyday geographies of mothering children with complex heath care needs

Creating a Pharmacotherapy Collaborative Practice Network to Manage Medications for Children and Youth: A Population Health Perspective

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