The association between socioeconomic disadvantage and parent-rated health in children and adolescents with chronic kidney disease—the Kids with CKD (KCAD) study

Didsbury, Madeleine; Zwieten, Anita van; Chen, Kerry; James, Laura; Francis, Anna; Kim, Siah; McTaggart, Steven; Walker, Amanda; Mackie, Fiona; Kara, Tonya; Prestidge, Chanel; Teixeira‐Pinto, Armando; Barton, Belinda; Lorenzo, Jennifer; Lah, Sunčica; Howard, Kirsten; Nassar, Natasha; Au, Eric; Tong, Allison; Craig, Jonathan C.; Wong, Germaine

doi:10.1007/s00467-019-04209-7

Cited by 21 publications

(24 citation statements)

References 29 publications

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“…Furthermore, most caregivers in our study were illiterate and of lower educational levels, which make their chances of finding jobs low. Two previous studies show that caregivers of children with ESRD were unemployed and financially supported by another member of the family [24,25].…”

Section: Discussionmentioning

confidence: 99%

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

Darwish

Hassan

Taha

et al. 2020

J. Egypt. Public. Health. Assoc.

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Background Chronic disease greatly increases children’s dependency on parents/caregivers (usually mothers) as they face new problems associated with caring for a child with chronic disease. Thus, chronic kidney disease (CKD) presents a burden for children and their families that last throughout life in different aspects. This study aimed to assess family impact and economic burden of chronic kidney disease (CKD) in children on their families. Methods A cross-sectional study was carried out on 250 caregivers of children with CKD attending tertiary care hospital/health insurance clinics in Assiut, Egypt using PedsQL™ family impact module (FIM) for assessing family impact and economic burden between January and May 2018. Results Seventy six percent of caregivers shared paying for treatment with health insurance while 14% paid the total expenses out of their pockets. Although the majority (87.2%) of caregivers suffered different degrees of financial hardship, more than 60% of them had no coping strategy. The regression module showed that responding caregiver, degree of financial hardship, treatment modality, and socioeconomic class were significant predictors of total FIM (β = 0.38, P < 0.001; β = 0.28, P < 0.001; β = 0.22, P < 0.001; β = 0.13, P = 0.006 respectively). Conclusion Most caregivers were involved in paying for treatment of their children either totally or sharing with health insurance and suffered different degrees of financial hardship. Mothers, caregivers with great financial hardship, and caregivers of children on dialysis had the lowest scores of PedsQL™ FIM. There is a high need for expansion of health insurance umbrella to reduce financial hardship together with continued multidimensional support to families.

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Section: Discussionmentioning

confidence: 99%

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

Darwish

Hassan

Taha

et al. 2020

J. Egypt. Public. Health. Assoc.

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“…In this study, PRO tools were used to quantify the burden of being a caregiver of a child on chronic dialysis. Previous studies have demonstrated the physical, psychological, social, and financial burdens experienced by caregivers of children on dialysis from a qualitative perspective ( 5 , 6 , 22 – 28 ). To our knowledge, this study is the first to use PROMIS measures to evaluate caregiver experience in the pediatric dialysis population and is one of the first to use these tools in caregivers of any pediatric patient with chronic illness ( 29 , 30 ).…”

Section: Discussionmentioning

confidence: 99%

When Dialysis “Becomes Life”: Pediatric Caregivers' Lived Experiences Obtained From Patient-Reported Outcomes Measures

et al. 2022

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IntroductionQualitative research reveals significant caregiver impact resulting from managing children requiring chronic dialysis but offers few quantitative measures of their lived experiences.Materials and MethodsThis cross-sectional study included 25 caregivers of children on chronic peritoneal dialysis (PD) and hemodialysis (HD) enrolled from 2018 to 2019 at a large pediatric dialysis program in the U.S.Patient Reported Outcomes Measures Information System (PROMIS) measures and free text commentary were collected and analyzed to evaluate the self-reported impact and wellbeing of these caregivers.ResultsAmong all dialysis modalities, caregivers' positive affect (43.4 ± 10) and general life satisfaction (45.1 ± 11.5) were significantly lower than the general adult population. Compared with HD caregivers, PD caregivers demonstrated significantly more fatigue and sleep disturbance and less positive affect and life satisfaction. Amongst HD caregivers, sleep disturbance, positive affect, and meaning/purpose differed significantly from the general population. Analyses of text commentary revealed that caregivers also expressed the feelings of loss, importance of knowing the impact of dialysis prior to initiation, need for a support group, and value of home nursing.ConclusionsCaregivers of children on chronic dialysis had significantly poorer self-rated health and wellbeing compared with the general adult population. This may be due in part to their feelings of social isolation. Our findings highlight opportunities to improve caregivers' lived experiences.

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“…La ERC era responsable de gran número de muertes tanto en niños como en adultos; pero gracias al avance tecnológico, la sobrevida ha mejorado. Sin embargo, la calidad de vida tanto del niño que la sufre como la de su familia se puede ver afectada por las complicaciones que provoca (14,15). La Organización Mundial de la Salud dene la calidad de vida relacionada con la salud (CVRS) como "las metas, expectativas, estándares o preocupaciones de un niño sobre su salud en general y los dominios relacionados con la salud" (16,17).…”

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Calidad de vida en los niños que viven con Enfermedad Renal Crónica

Alvarado

Vega

Fonseca³

et al. 2019

Investg. Enferm. Imagen Desarollo.

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Introducción: La enfermedad renal en los niños causa diferentes cambios que pueden alterar su calidad de vida; por esta razón, es importante que el profesional de salud busque estrategias que contribuyan a disminuir las secuelas y mejorar la calidad de vida del niño. Objetivo: Caracterizar la calidad de vida de los niños de 8 a 18 años, con diagnóstico de enfermedad renal crónica, según el instrumento KIDSCREEN-27 de una institución de salud de la ciudad de Bogotá (Colombia). Método: Estudio descriptivo de corte transversal con una población de estudio de 62 niños con diagnóstico de enfermedad renal crónica con edades entre 8 y 18 años que asistieron a la consulta de nefrología pediátrica. Resultados: Se analizaron cinco dimensiones, donde cada una tuvo un puntaje ponderado mayor a 70, que se relaciona con una buena calidad de vida; la dimensión con menor puntaje, la de actividad física, tuvo un puntaje de 70,1, y la dimensión de estado de ánimo y sentimientos obtuvo el mayor puntaje, 80,8. Conclusiones: La enfermedad renal crónica puede alterar la calidad de vida, sobre todo en la dimensión de actividad física y entorno escolar. Es primordial que se planteen programas que tengan en cuenta las cinco dimensiones, pero especialmente las que obtuvieron menor puntaje, con el fin de mejorar la calidad de vida de los niños con esta enfermedad.

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The association between socioeconomic disadvantage and parent-rated health in children and adolescents with chronic kidney disease—the Kids with CKD (KCAD) study

Cited by 21 publications

References 29 publications

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

When Dialysis “Becomes Life”: Pediatric Caregivers' Lived Experiences Obtained From Patient-Reported Outcomes Measures

Calidad de vida en los niños que viven con Enfermedad Renal Crónica

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