Objective: To evaluate parental perceptions of their child’s acute or chronic kidney disease, and to identify significant determinants of parental understanding among a sample of caregivers.
Method: This is a cross-sectional study, which was conducted over 4 month period from 1 February, 2014 to 30 May, 2014. The study involved structured face-to-face interviews for questionnaire completion with a convenience sample of 121 adult caregivers of children with acute or chronic kidney disease (aged 18–54 years) to explore their perceptions on their child’s condition. Subjects were recruited from the Pediatric Nephrology clinic at King Abdul-Aziz University Hospital in Jeddah, Saudi Arabia.
Results: Perceived diagnosis awareness (77%), understanding of complex information such as the use of clean intermittent transurethral catheter (67%), and effects of medication (51%). There was an association between perceived knowledge and understanding of the condition with caregiver level of education (P value=<0.0001). Understanding of disease etiology is associated with education level (P value <0.05). Perceived knowledge and understanding of kidney disease was significantly positively associated with time-taken to explain the disease (P value <0.0001). Overall satisfaction levels with explanations were positively associated with caregiver age (P value<0.05). Caregivers favoured use of educational materials, particularly video (95%).
Conclusion: This study reveals existing patient-doctor communication can be improved through the establishment of standardized guidelines and practice on what, when, and how to elaborate on the condition with caregivers; and the efficacy of these practices to be measured and regularly reviewed.