Multidimensional impact on families of children with steroid‐sensitive nephrotic syndrome

Dhooria, Gurdeep Singh; Singh, Harkanwal Preet; Bhat, Deepak; Bains, Harmesh Singh; Soni, RK; Kumar, Mohit

doi:10.1111/jpc.13445

Cited by 9 publications

(13 citation statements)

References 15 publications

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“…This may be due to the nature of CKD and its anticipated progression to ESRD and related premature mortality, in addition to worry about the efficacy, side effects of treatment, and comorbidities associated with CKD. This was consistent with results of studies in caregivers of children with nephrotic syndrome, one of the major causes of CKD in our children, who also reported the lowest score in worry function [28,30].…”

Section: Discussionsupporting

confidence: 93%

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: Discussionsupporting

confidence: 93%

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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“…All individual domain scores, HRQOL score, family functioning, and total score were significantly lower compared to families with healthy children who had a mean score of 100. 12 Furthermore, the HRQOL score and total scores were comparable to families having children with developmental delays. 13 However, the family functioning mean score was higher in AAOCA families compared to those families with developmental delays (90 vs 82.3).…”

Section: Discussionmentioning

confidence: 86%

Decreased Quality of Life in Children With Anomalous Aortic Origin of a Coronary Artery

Agrawal

Mery

Sami

et al. 2021

World J Pediatr Congenit Heart Surg

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Background: Anomalous aortic origin of a coronary artery (AAOCA) is associated with sudden death in the young. We sought to determine quality of life (QOL) in patients/families affected by AAOCA. Methods: Patients with AAOCA (8-18 years) were prospectively included from January 2016 to May 2017. Parent proxy and patient Pediatric Cardiac Quality of Life Inventory (PCQLI) were used to evaluate QOL and Pediatric Quality of Life Inventory (PedsQL) Family Impact Module to assess the impact of AAOCA on families, as primary outcomes. Secondary outcomes included peer relationship, anxiety, and depression assessed using patient-reported outcomes measurement information system. Patients deemed high-risk were offered surgery/exercise restriction. Generalized linear mixed regression models were used to determine significant predictors of outcomes. Results: Fifty-three patients, the majority (n = 31, 59%) unrepaired, and 49 caregivers were included. Using PCQLI, patient and parent proxy QOL scores were similar to published scores for children with long-QT syndrome. Patients’ QOL score was associated with exertional symptoms, perceived chronic disease, and altered parent’s concentration ability. Likewise, parent proxy QOL scores were associated with mother’s living situation, exertional symptoms, parent missing work for ≥1 day, and disturbed parental functioning at work. Family impact scores were associated with lower maternal education, among other measures. Risk categories or surgical status did not impact patient, parent proxy reported, or family impact QOL. Conclusion: Anomalous aortic origin of a coronary artery is associated with decreased QOL as perceived by patients and caregiver and is associated with numerous facets of family functioning. These findings are independent of risk categorization or surgical status.

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“…Previous studies on the impact of NS on family health did not report this association; it was unclear from their methodologies whether caregivers of children in relapse were excluded. 7,10,18 Relapse may exert adverse psychosocial effects on the family via several mechanisms. First, it unpleasantly reminds caregivers that NS in the child is not cured yet.…”

Section: Discussionmentioning

confidence: 99%

“…16,17 Despite NS being a chronic relapsing condition in most children and the heavy reliance on caregiver’s input in the home management, few studies have examined the psychosocial well-being of caregivers of children with NS. 7,10,18 Indeed, the impact of NS on caregiver’s health has received relatively little attention compared with other chronic childhood illnesses. 19,20 We hypothesized that caregivers of children with NS suffer psychological distress and significant caregiver burden similar to those of children with other chronic illnesses.…”

Section: Introductionmentioning

confidence: 99%

Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study

Esezobor

Solarin

Olagunju

2020

Can J Kidney Health Dis

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Background: Childhood nephrotic syndrome (NS) follows a chronic course in most children. However, little is known about the psychosocial burden of NS on the caregivers despite evidence that caregiver burden or impairment in their well-being may alter the outcome of chronic childhood illnesses. Objectives: To determine the frequency and predictors of significant caregiver burden and psychological distress among caregivers of children with NS. Design: A cross-sectional study. Setting: Two pediatric nephrology clinics in Lagos, Nigeria. Patients: We included primary caregivers of children with idiopathic NS for at least 6 months. Measurements: The primary outcomes were psychological distress and significant caregiver burden among caregivers. Methods: We interviewed caregivers using the 12-item General Health Questionnaire (GHQ-12) and the 6-item Zarit Burden Interview (ZBI-6). The GHQ-12 scores ≥ 3 and ZBI-6 scores ≥ 6 indicated psychological distress and significant caregiver burden, respectively. Results: The caregivers were mostly mothers (77.9%) and married (92.4%), whereas the children (n = 172) were mainly male (65.1%). Most of the children (n = 152; 88.4%) had steroid-sensitive NS including 24 (14%) children with frequent relapses or steroid dependence and 20 (11.6%) with steroid-resistant NS. Of the 172 caregivers, 53 (30.8%) and 30 (17.4%) reported psychological distress and significant burden, respectively. Caregivers of children in relapse had adjusted an odds ratio (aOR) with 95% confidence interval (CI) of 2.45 (1.05-5.67) and 3.30 (1.22-8.92) of psychological distress and significant caregiver burden, respectively. Furthermore, caregivers of male children and those who needed help paying for health care had an aOR of 4.61 (1.34-15.68) and 3.06 (1.06-8.87) of significant caregiver burden, respectively. Limitations: The study was limited by its cross-sectional design and the use of generic rather than disease-specific instruments. Conclusion: One in every 6 caregivers of children with idiopathic NS reported significant caregiver burden, and it was associated with psychological distress. Our findings underscore the need for psychosocial support for caregivers of children with NS, especially those with identifiable vulnerability.

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Multidimensional impact on families of children with steroid‐sensitive nephrotic syndrome

Abstract: FI score should be evaluated in all cases of NS as parenting such children may significantly affect all domains of family functioning.

Cited by 9 publications

References 15 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

Decreased Quality of Life in Children With Anomalous Aortic Origin of a Coronary Artery

Significant Burden and Psychological Distress Among Caregivers of Children With Nephrotic Syndrome: A Cross-Sectional Study

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