Evaluation of the Burden of Care and the Quality of Life in the Parents of Turkish Children with Familial Mediterranean Fever

Abstract

Purpose: This study aimed to determine the burden of care and the quality of life in caregivers of children with FMF.

Design and methods: A cross-sectional study was conducted. Caregivers of the 109 children with FMF followed by a pediatric nephrology department were invited to join the study. Besides demographic information, the Zarit Care Burden Scale (ZCBS) and the World Health Organization Quality of Life Questionnaire-Short Form (WHOQOL-BREF) were used to collect data. Results for 90 patients were analyzed.

Results: The mean (±SD) ZCBS score of the caregivers was 44.78 ± 13.55. Care burden of the caregivers according to the ZCBS was categorized as; 61.1% (n = 55) mild, 25.6% (n = 23) moderate, and 13.3% (n = 12) severe. Although single caregivers were perceived as having a relatively higher burden than those who were married (80% and 36%), this difference was not significant. There were no statistically significant differences between ZCBS categories concerning caregivers' gender, educational status, and having comorbidities (p > 0.05). Also, there were no significant correlations between ZCBS and the WHOQOL-BREF domains (p > 0.05).

Conclusion: This study showed that the quality of life of the caregivers of children with FMF was not adversely affected, but a significant number of caregivers perceived care burden in moderate severity. Attention should be paid to the needs of caregivers, and they should be provided with adequate social, economic, physical, and psychological support.

Practice implication: Responsive strategies to support caregivers' should be taken as means of social, economic, physical, and psychological needs.

Keywords: Caregivers/psychology; Children; Chronic disease/nursing; Familial Mediterranean fever; Family caregivers; Quality of life.