Parental perspectives on caring for a child with chronic kidney disease: an in‐depth interview study

Tong, Allison; Lowe, A.; Sainsbury, Peter; Craig, Jonathan C.

doi:10.1111/j.1365-2214.2010.01067.x

Cited by 139 publications

(171 citation statements)

References 16 publications

(18 reference statements)

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“…13 Still, adaptation requires that the family caregiver includes all family members, so that the healthy ones don't feel neglected as described below: […”

Section: ] (E-9 )mentioning

confidence: 99%

“…12 Similar results related to family dynamics (the home, employment, financial and leisure environment) was interrupted with the diagnosis of the child's kidney disease, since the family caregiver is most often the mother and needs to be present with the child in addition to managing care at home. 13 In this context, the experience of discovering CKD with confirmation of diagnosis needs to be observed by the nursing profession as an opportunity to approach the family in primary health care and to invest in the promotion of the adaptation to the care that will be necessary to ensure the equilibrium of the family unit.…”

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confidence: 99%

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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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“…13 Still, adaptation requires that the family caregiver includes all family members, so that the healthy ones don't feel neglected as described below: […”

Section: ] (E-9 )mentioning

confidence: 99%

mentioning

confidence: 99%

Criança Em Tratamento Conservador Renal: Experiências Das Cuidadoras Familiares

Lise

Schwartz²,

Milbrath³

et al. 2017

Texto contexto - enferm.

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“…In a series of in-depth interviews with parents of children with CKD, Tong et al identified four major themes: absorbing the clinical environment, medicalizing parents, disruption of family norms, and the need to develop new coping strategies and support structures (22). In the study, parents consistently reported having a child with CKD as "a pervasive and profoundly negative experience."…”

Section: Children and Families With Few Social Resourcesmentioning

confidence: 99%

“…In the study, parents consistently reported having a child with CKD as "a pervasive and profoundly negative experience." (22) Other studies have noted pediatric dialysis disrupts family life (23,24), affects parental marriages (23,25,26), parental healthrelated quality of life (HRQOL) (24), parental stress (26)(27)(28)(29), and results in less parental time spent with healthy siblings (30) and more schooling problems in siblings (23). While all of these studies are limited by small sample sizes, future research may provide better guidance.…”

Section: Children and Families With Few Social Resourcesmentioning

confidence: 99%

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

Wightman

Freeman

2016

CJASN

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Improvements in pediatric dialysis over the past 50 years have made the decision to proceed with dialysis straightforward for the majority of pediatric patients. For certain groups, however, such as children with multiple comorbid conditions, children and families with few social and economic resources, and neonates and infants, the decision of whether to proceed with dialysis remains much more controversial. In this review, we will examine the best available data regarding the outcomes of dialysis in these populations and analyze the important ethical considerations that should guide decisions regarding dialysis for these patients. We conclude that providers must continue to follow a nuanced and individualized approach in decision making for each child and to recognize that, regardless of the decision reached about dialysis, there is a continued duty to care for patients and families to maximize the remaining quality of their lives.

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“…[20] En este estudio, el apoyo fue proporcionado por las madres en etapa adulta, coincidiendo con Montalvo quien encontró que en mayor proporción las mujeres desempeñan este rol, [21] [22] Las características de los menores, se relacionan con los ha llazgos de Delucchi, donde la edad promedio de los niños era de 8,6 años y alta la incidencia de niños en diálisis peritoneal, la disminu ción en la edad de ingreso y el deterioro progresivo en su crecimien to requiere la presencia de un cuidador. Respecto al tratamiento, la apreciación de las cuidadoras se relaciona con lo encontrado por Tong, en este estudio se asocia con estrés, cansancio e impotencia.…”

Section: Discussionunclassified

Estrategias de gestión en cuidadores de menores de 14 años en diálisis

Ramírez-Perdomo

Acosta

Vargas

et al. 2014

RFS

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Objetivo: Determinar las estrategias de gestión en el proceso de duelo de los cuidadores de menores de 14 años en diálisis en la unidad renal del Hospital Universitario Hernando Moncaleano Perdomo (HUHMP) de Neiva. Materiales y métodos: Estudio de enfoque cualitativo, tipo fenomenológico; se empleó una entrevista semiestructurada. Los medios utilizados por las cuidadoras para sobrellevar el proceso de duelo según la teoría del Duelo Disfuncional de Gaskill y colaboradores, fueron estrategias de gestión internas eficaces: espiritualidad, motivación y resignación; estrategias de gestión internas ineficaces: culpa y sobreprotección; estrategias de gestión externas eficaces: apoyo brindado por la pareja, familia, personal de salud y apoyo social; estrategias de gestión externas ineficaces: apoyo ineficaz de pareja, familia, entorno social y del personal de salud. Encontrándose marcada la impotencia. Conclusiones: Las cuidadoras no aceptan su realidad, la resignación ayuda a sobrellevarla, por el contrario la impotencia lo impide. La resignación, que contribuye a disminuir los sentimientos de impotencia, se alcanza mediante las estrategias de gestión eficaces e ineficaces, aunque éstas últimas producen disconfort y desencadenan sentimientos de impotencia, limitando la realización de estrategias de gestión eficaces. Estos hallazgos amplían la visión del equipo de salud, especialmente en enfermería permitiendo reconocer que hay un cuidador que necesita ser cuidado.

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Parental perspectives on caring for a child with chronic kidney disease: an in‐depth interview study

Abstract: Despite facing profound and pervasive difficulties, parents strived to fulfil their dual parental and health care provider responsibilities. Parents appear to need better support structures to help them cope with the difficulties encountered during all stages of their child's illness.

Cited by 139 publications

References 16 publications

Criança Em Tratamento Conservador Renal: Experiências Das Cuidadoras Familiares

Criança Em Tratamento Conservador Renal: Experiências Das Cuidadoras Familiares

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

Estrategias de gestión en cuidadores de menores de 14 años en diálisis

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