Parental Perspectives on the Financial Impact of Caring for a Child With CKD

Medway, Meredith; Tong, Allison; Craig, Jonathan C.; Kim, Siah; Mackie, Fiona; McTaggart, Steven; Walker, Amanda; Wong, Germaine

doi:10.1053/j.ajkd.2014.07.019

Cited by 102 publications

(87 citation statements)

References 28 publications

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“…High expenses of treatments, transportation and hospitalization, besides the living costs imposed a heavy burden for families. Previous studies found similar findings [6,33,38]. According to Sattari et al, the cost of therapy in thalassemia as well as any other disease does not only include medication cost.…”

Section: Absence Of a Support Systemmentioning

confidence: 55%

The Burden of Care: Experiences of Parents of Children with Thalassemia

Pouraboli¹,

Abedi²,

Abbaszadeh³

et al. 2017

J Nurs Care

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Section: Absence Of a Support Systemmentioning

confidence: 55%

The Burden of Care: Experiences of Parents of Children with Thalassemia

Pouraboli¹,

Abedi²,

Abbaszadeh³

et al. 2017

J Nurs Care

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“…16 In addition, the child's family caregiver needs to learn to perform unknown invasive procedures and try to adapt. A situation like the following; [ …”

Section: ] (E-2)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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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 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%

“…Prior research has demonstrated that having a child on pediatric dialysis negatively affects family's finances, a burden that will be experienced by the family as a whole (29,30,33). These expenses reinforce the importance of continued advocacy by the nephrology community for the provision of resources to our patients and their families, but also raise questions over how much expense is reasonable for a family to take on.…”

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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Parental Perspectives on the Financial Impact of Caring for a Child With CKD

Cited by 102 publications

References 28 publications

The Burden of Care: Experiences of Parents of Children with Thalassemia

The Burden of Care: Experiences of Parents of Children with Thalassemia

Criança Em Tratamento Conservador Renal: Experiências Das Cuidadoras Familiares

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

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