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

Abstract

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.

Emotional distress among parent caregivers of adolescents with sickle cell disease: Association with patients and caregivers variables

“…While a high rate of emotional distress in our study underscores the burdensome nature of caregiving in children with chronic illnesses in consonance with earlier works, the rate of caregiver distress across other chronic childhood illnesses compare to our study is mixed, albeit significant. For example, a higher proportion of caregivers of children with obstructive adenotonsillar hypertrophy (48%) relative to our study was emotionally distressed, whereas lower rates of distress were found in caregivers of children with neurodevelopmental disorders (38.3%), and nephrotic syndrome (30.8%) compared to our study (Esezobor et al, 2020; Olagunju et al, 2015, 2017). On a different note, the prevalence of emotional distress in our study participants is several folds the rates of distress reported in caregiving mothers of normal full-term children, and the general adult population in comparable settings (Erinfolami et al, 2016; Ukpong et al, 2003).…”

Health-Related Quality of Life Difference between Early Diagnosed and Finished Therapy of Nephrotic Syndrome in Children

“…Esezobor et al found that 30.8% of caregivers suffered psychosocial distress. Chronic nature of disease, frequent hospitalization, and frequency of relapse play important role in the severity of psychosocial distress [15]. In contrast, Roussel et al found that quality of life of children with difficult-to-treat" nephrotic syndrome was still high and close to children without any chronic disease.…”

“…Median age of patients with nephrotic syndrome in a study from Indonesia was 8.5 years with male predominance at a ratio of 2:1 to 3:2 [7]. A study by Esezobor et al found that median age of children with nephrotic syndrome was 7.3 years [15]. Roussel et al reported a higher mean age which was 11.6 years [2].…”

Evaluating the Quality of Life of 231 Children With Primary Nephrotic Syndrome and Assessing Parental Awareness of the Disease

“…Such feelings may also indirectly affect the child's psychological state, which can further negatively impact on their quality of life ( 17 ). Rüth et al ( 1 ) showed that parents' (especially mothers') negative emotions severely negatively impacted the quality of life and psychological wellbeing of children with PNS, which may cause a further increase in the negative emotions of the parents, forming a vicious cycle ( 18 ). Pediatricians and nurses want to offer long-term standardized treatment to children with PNS through a comprehensive management protocol to improve their quality of life ( 19 ).…”