The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers
Background: Childhood nephrotic syndrome is a rare kidney disease characterized by sudden onset of edema, massive proteinuria, and hypoalbuminemia. Rare diseases can have a long and difficult trajectory to diagnosis. Objective: We aimed to explore the experiences of children with nephrotic syndrome...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
SAGE Publishing
2022-11-01
|
| Series: | Canadian Journal of Kidney Health and Disease |
| Online Access: | https://doi.org/10.1177/20543581221139025 |
| _version_ | 1798015943568261120 |
|---|---|
| author | Augustina Okpere MBBS, MSc Susan Samuel MD, MSc Kathryn King-Shier RN, PhD Lorraine Hamiwka MD Meghan J. Elliott MD, MSc |
| author_facet | Augustina Okpere MBBS, MSc Susan Samuel MD, MSc Kathryn King-Shier RN, PhD Lorraine Hamiwka MD Meghan J. Elliott MD, MSc |
| author_sort | Augustina Okpere MBBS, MSc |
| collection | DOAJ |
| description | Background: Childhood nephrotic syndrome is a rare kidney disease characterized by sudden onset of edema, massive proteinuria, and hypoalbuminemia. Rare diseases can have a long and difficult trajectory to diagnosis. Objective: We aimed to explore the experiences of children with nephrotic syndrome and their caregivers in their search of a nephrotic syndrome diagnosis. Design: An exploratory, qualitative descriptive study design. Setting: The Alberta Children’s Hospital outpatient nephrology program in Calgary, Alberta, Canada. Sample: Children aged 9 to 18 years with steroid-sensitive nephrotic syndrome and their caregivers. Methods: We undertook semi-structured interviews with children (alone or with a caregiver present) and their caregivers using a question guide suitable to their age and role. We used a thematic analysis approach to inductively code the data and characterize themes related to our research question. Results: Participants included 10 children aged 9 to 18 years (6 boys and 4 girls) and 18 caregivers (8 men and 10 women). We characterized 3 themes related to participants’ experiences in search of a diagnosis of nephrotic syndrome: (1) unexpected and distressing symptom onset, (2) elusiveness of a diagnosis, and (3) encountering a diagnosis. Children with nephrotic syndrome and their caregivers described experiencing initial anxiety due to their unusual and unexpected symptom onset and lack of awareness about the disease. Perceived diagnostic delays and incorrect diagnosis early in the course of the disease contributed to multiple consultations with a variety of care providers. Overall, participants expressed a desire to move past their diagnosis, learn about nephrotic syndrome, and engage in their treatment plans. Limitations: The views expressed by participants may not reflect those of individuals from other settings. The time elapsed since participants’ nephrotic syndrome diagnosis may have influenced their recall of events and reactions to this diagnosis. Conclusions: In characterizing the diagnostic experiences of children and their caregivers, our study provides insight into how patients with nephrotic syndrome and their caregivers can be supported by the healthcare team along this journey. Focused strategies to increase awareness and understanding of nephrotic syndrome among healthcare providers are needed to improve patients’ and families’ diagnostic experiences. |
| first_indexed | 2024-04-11T15:42:46Z |
| format | Article |
| id | doaj.art-a07a0ada61d84a0a96fa379dce7b915f |
| institution | Directory Open Access Journal |
| issn | 2054-3581 |
| language | English |
| last_indexed | 2024-04-11T15:42:46Z |
| publishDate | 2022-11-01 |
| publisher | SAGE Publishing |
| record_format | Article |
| series | Canadian Journal of Kidney Health and Disease |
| spelling | doaj.art-a07a0ada61d84a0a96fa379dce7b915f2022-12-22T04:15:44ZengSAGE PublishingCanadian Journal of Kidney Health and Disease2054-35812022-11-01910.1177/20543581221139025The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their CaregiversAugustina Okpere MBBS, MSc0Susan Samuel MD, MSc1Kathryn King-Shier RN, PhD2Lorraine Hamiwka MD3Meghan J. Elliott MD, MSc4Department of Pediatrics, Cumming School of Medicine, University of Calgary, AB, CanadaDepartment of Community Health Sciences, University of Calgary, AB, CanadaFaculty of Nursing, University of Calgary, AB, CanadaDepartment of Pediatrics, Cumming School of Medicine, University of Calgary, AB, CanadaDepartment of Medicine, University of Calgary, AB, CanadaBackground: Childhood nephrotic syndrome is a rare kidney disease characterized by sudden onset of edema, massive proteinuria, and hypoalbuminemia. Rare diseases can have a long and difficult trajectory to diagnosis. Objective: We aimed to explore the experiences of children with nephrotic syndrome and their caregivers in their search of a nephrotic syndrome diagnosis. Design: An exploratory, qualitative descriptive study design. Setting: The Alberta Children’s Hospital outpatient nephrology program in Calgary, Alberta, Canada. Sample: Children aged 9 to 18 years with steroid-sensitive nephrotic syndrome and their caregivers. Methods: We undertook semi-structured interviews with children (alone or with a caregiver present) and their caregivers using a question guide suitable to their age and role. We used a thematic analysis approach to inductively code the data and characterize themes related to our research question. Results: Participants included 10 children aged 9 to 18 years (6 boys and 4 girls) and 18 caregivers (8 men and 10 women). We characterized 3 themes related to participants’ experiences in search of a diagnosis of nephrotic syndrome: (1) unexpected and distressing symptom onset, (2) elusiveness of a diagnosis, and (3) encountering a diagnosis. Children with nephrotic syndrome and their caregivers described experiencing initial anxiety due to their unusual and unexpected symptom onset and lack of awareness about the disease. Perceived diagnostic delays and incorrect diagnosis early in the course of the disease contributed to multiple consultations with a variety of care providers. Overall, participants expressed a desire to move past their diagnosis, learn about nephrotic syndrome, and engage in their treatment plans. Limitations: The views expressed by participants may not reflect those of individuals from other settings. The time elapsed since participants’ nephrotic syndrome diagnosis may have influenced their recall of events and reactions to this diagnosis. Conclusions: In characterizing the diagnostic experiences of children and their caregivers, our study provides insight into how patients with nephrotic syndrome and their caregivers can be supported by the healthcare team along this journey. Focused strategies to increase awareness and understanding of nephrotic syndrome among healthcare providers are needed to improve patients’ and families’ diagnostic experiences.https://doi.org/10.1177/20543581221139025 |
| spellingShingle | Augustina Okpere MBBS, MSc Susan Samuel MD, MSc Kathryn King-Shier RN, PhD Lorraine Hamiwka MD Meghan J. Elliott MD, MSc The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers Canadian Journal of Kidney Health and Disease |
| title | The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers |
| title_full | The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers |
| title_fullStr | The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers |
| title_full_unstemmed | The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers |
| title_short | The Diagnostic Journey of Childhood Idiopathic Nephrotic Syndrome: Perspectives of Children and Their Caregivers |
| title_sort | diagnostic journey of childhood idiopathic nephrotic syndrome perspectives of children and their caregivers |
| url | https://doi.org/10.1177/20543581221139025 |
| work_keys_str_mv | AT augustinaokperembbsmsc thediagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT susansamuelmdmsc thediagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT kathrynkingshierrnphd thediagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT lorrainehamiwkamd thediagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT meghanjelliottmdmsc thediagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT augustinaokperembbsmsc diagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT susansamuelmdmsc diagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT kathrynkingshierrnphd diagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT lorrainehamiwkamd diagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers AT meghanjelliottmdmsc diagnosticjourneyofchildhoodidiopathicnephroticsyndromeperspectivesofchildrenandtheircaregivers |