Patient experience and healthcare priorities in childhood steroid sensitive nephrotic syndrome
Date
2021-09
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Abstract
Childhood idiopathic steroid sensitive nephrotic syndrome (SSNS) is characterized by sudden and unexpected onset of body swelling, massive proteinuria and hypoalbuminemia. The chronic recurrent relapses and side effects of its treatment can impact patients’ and caregivers’ experiences of the disease. The aims of this qualitative study were to explore the experiences and healthcare priorities of children with SSNS and their caregivers. We interviewed 28 participants that comprised 10 children aged 9 to18 years (6 boys and 4 girls) and 18 caregivers over the internet on Microsoft Teams between January and April 2021. Using qualitative description and thematic analysis, we identified three themes related to the diagnostic journey of childhood nephrotic syndrome (unexpected distressing symptoms, elusiveness of diagnosis and confronting the diagnosis) and three themes related to the experiences of children living with SSNS and their caregivers (disruption of normalcy, regaining control and dependable social support system). Four actionable needs and care priorities of participants were identified: desire to be heard, understanding the cause of nephrotic syndrome, alleviating the burden of steroid regimen and enhanced social support availability. Our study provides insights into several strategies that healthcare professional could adopt to improve the diagnostic experience of children and their caregivers in search of a diagnosis of nephrotic syndrome and care of patients and their families. Also, our findings have the potential to inform the design and conduct of future research in priority setting and treatment of childhood SSNS.
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Keywords
experiences, qualitative study, nephrotic syndrome, steroid sensitive nephrotic syndrome, priorities, children, caregivers, qualitative research
Citation
Okpere, A. N. (2021). Patient experience and healthcare priorities in childhood steroid sensitive nephrotic syndrome (Master's thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.