Impact of end‐stage renal disease in children on their parents

Baek, Hee Sun; Park, Sun-Hee; Ha, Il Soo; Kang, Hee Gyung; Cheong, Hae Il; Lee, Joo Hoon; Cho, Hee Yeon; Cho, Min Hyun

doi:10.1111/nep.13083

Cited by 14 publications

(22 citation statements)

References 20 publications

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“…This phenomenon is called "response shift" which means that with passage of time caregivers learned how to cope with and adjust to their child illness and thus report better QoL [33]. In contrast to our results, a study of family impact of children with ESRD revealed higher scores of the PedsQL™ FIM with short duration (< 5 years) than longer duration (≥ 5 years) [23]. This result suggests that a longer duration of ESRD can impose additional burden on parents or caregivers especially when their children reach end-stage of the disease.…”

Section: Discussioncontrasting

confidence: 99%

“…Because most patients with CKD especially children need comprehensive support and care, their caregivers feel more physical, psychological, and financial stress. Unfortunately, few studies have been conducted to measure the QoL of caregivers of children with CKD [23].…”

Section: Discussionmentioning

confidence: 99%

“…To our knowledge, this study is the first to use PedsQL™ Family Impact Module to study the family impact of CKD in children in all stages of CKD not only ESRD [23]. However, this study has some limitations: caregivers were recruited in the study during a routine follow-up visit or after hemodialysis sessions and therefore the reported scores are not in direct response to disease exacerbation.…”

Section: Strengths and Limitation Of The Studymentioning

confidence: 99%

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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: Discussioncontrasting

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Section: Strengths and Limitation Of The Studymentioning

confidence: 99%

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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, we concluded that pediatric patients on PD had a better QOL in comparison to pediatric patients on HD according to the parent proxy-reports. This conclusion is similar to a Korean study of 79 ESRD pediatric patients aged 8 to 18 years using the PedsQL TM 3.0 ESRD Module and PedsQLTM FIM questionnaires 10. The parent reports showed patients on PD had much better QOL than the HD patients.…”

Section: Discussionsupporting

confidence: 87%

Comparison of quality of life in children undergoing peritoneal dialysis versus hemodialysis

Alhusaini

Wayyani

Dafterdar

et al. 2019

SMJ

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Objectives: To record pediatric end stage renal disease (ESRD) patients’ quality of life (QOL) in relation to peritoneal dialysis (PD) and hemodialysis (HD). Chronic kidney disease is a rising global epidemic yielding worldwide prevalence of 11-13%. It could possibly lead to ESRD, thus imposing serious burdens on patients and reducing their QOL. These burdens may affect their family members as well. Methods: This cross-sectional study examined 23 pediatric ESRD patients aged 2-18 years who were undergoing peritoneal dialysis and hemodialysis at King Abdulaziz University Hospital, Jeddah, Kingdom of Saudi Arabia, in July 2018. Data were collected using the validated Pediatric Quality of Life Inventory™ 3.0 ESRD Module questionnaire. Results: The sample included HD (n=9, 40.9%) and PD (n=14, 60.9%) patients. According to the parent-proxy report, we found that the QOL among PD pediatric patients was significantly higher than HD patients ( p =0.045). Also, male HD patients had a significantly better QOL on the interaction subscale (70.83±15.95 compared to 30.00±24.00 for females [ p =0.023]). Conclusion: Quality of life was found to be better among PD pediatric patients in King Abdulaziz University Hospital, Kingdom of Saudi Arabia.

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“…However, their needs are never discussed or prioritized at any forum or adequately in literature [4]. In a study by Baek et al, the parents of 79 children receiving dialysis or transplant were administered a special questionnaire (Family Impact Module), and it was found that scores were worse for haemodialy sis, as compared to peritoneal dialysis or transplant [29]. In another study from Brazil by Garcia et al, 50 donors were asked to respond to the SF-36 questionnaire before and after transplantation.…”

Section: Importance Of Caregivers In Ckdmentioning

confidence: 99%

Quality of Life Considerations in 'Caregiver' Renal Donors in Countries with High Living Donor Ratios: A Narrative Review

Agarwal¹

2018

JOJUN

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Live donation in India follows a specific pattern; blood relatives (parents, grandparents, siblings) or spouses (mainly wives) are the main donors. The ratio of female: male donors is also high (>8:1). Ingrained cultural practices like close family bonds and joint families encourage this trend. The government, seeing the behavioral pattern in society, kept these norms in mind while formulating The Transplantation of Human Organs Act, 1994, along with its subsequent modifications [2].

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Impact of end‐stage renal disease in children on their parents

Abstract: The PedsQL™ FIM appears to be a useful tool for the assessment of family impact on children with ESRD. Further prospective studies focused on the QOL of parents and caregivers should be performed with the goal of improving clinical outcomes for pediatric ESRD patients.

Cited by 14 publications

References 20 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

Comparison of quality of life in children undergoing peritoneal dialysis versus hemodialysis

Quality of Life Considerations in 'Caregiver' Renal Donors in Countries with High Living Donor Ratios: A Narrative Review

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