Patient experience and healthcare priorities in childhood steroid sensitive nephrotic syndrome

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dc.contributor.advisorSamuel, Susan
dc.contributor.advisorElliott, Meghan
dc.contributor.authorOkpere, Augustina Nwaka
dc.contributor.committeememberKing-Shier, Kathryn
dc.contributor.committeememberHamiwka, Lorraine
dc.date2021-11
dc.date.accessioned2021-09-21T21:06:12Z
dc.date.available2021-09-21T21:06:12Z
dc.date.issued2021-09
dc.description.abstractChildhood 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.en_US
dc.identifier.citationOkpere, 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.en_US
dc.identifier.doihttp://dx.doi.org/10.11575/PRISM/39230
dc.identifier.urihttp://hdl.handle.net/1880/113913
dc.language.isoengen_US
dc.publisher.facultyCumming School of Medicineen_US
dc.publisher.institutionUniversity of Calgaryen
dc.rightsUniversity of Calgary graduate students retain copyright ownership and moral rights for their thesis. You may use this material in any way that is permitted by the Copyright Act or through licensing that has been assigned to the document. For uses that are not allowable under copyright legislation or licensing, you are required to seek permission.en_US
dc.subjectexperiencesen_US
dc.subjectqualitative studyen_US
dc.subjectnephrotic syndromeen_US
dc.subjectsteroid sensitive nephrotic syndromeen_US
dc.subjectprioritiesen_US
dc.subjectchildrenen_US
dc.subjectcaregiversen_US
dc.subjectqualitative researchen_US
dc.subject.classificationHealth Sciencesen_US
dc.titlePatient experience and healthcare priorities in childhood steroid sensitive nephrotic syndromeen_US
dc.typemaster thesisen_US
thesis.degree.disciplineMedicine – Community Health Sciencesen_US
thesis.degree.grantorUniversity of Calgaryen_US
thesis.degree.nameMaster of Science (MSc)en_US
ucalgary.item.requestcopytrueen_US
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