Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study
Objectives We explored the experiences of treatment strategies for steroid-sensitive nephrotic syndrome (SSNS) and care priorities among children living with the condition and their caregivers.Design A qualitative study using semistructured interviews. Data were analysed using reflexive thematic ana...
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| Format: | Article |
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BMJ Publishing Group
2025-07-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/15/7/e097602.full |
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| author | Susan Samuel Kathryn King-Shier Lorraine Hamiwka Meghan Elliott Augustina Okpere |
| author_facet | Susan Samuel Kathryn King-Shier Lorraine Hamiwka Meghan Elliott Augustina Okpere |
| author_sort | Susan Samuel |
| collection | DOAJ |
| description | Objectives We explored the experiences of treatment strategies for steroid-sensitive nephrotic syndrome (SSNS) and care priorities among children living with the condition and their caregivers.Design A qualitative study using semistructured interviews. Data were analysed using reflexive thematic analysis. We coded transcripts in duplicate and developed themes that integrate key concepts across roles.Setting Southern Alberta, Canada.Participants A purposive sample of children aged 8–18 years, with SSNS and their caregivers from a paediatric nephrotic syndrome cohort.Results 28 individuals (10 children and 18 caregivers) participated in this study. All had experienced a relapse after initial diagnosis and steroid treatment. Participants identified how their experiences with SSNS treatments influenced their willingness to accept further steroids and other second-line agents. Findings are elaborated across the following four themes: (1) reluctant acceptance of steroids (steroid aversion, lack of personalised steroid dosing, altered self-regulation and acknowledging steroid effectiveness); (2) coping with unexpected relapses (repeating the cycle, restricted life participation and tempered optimism); (3) uncertainty about second-line therapies (striving for stability, cumulative burden of adverse effects and exploring alternatives) and (4) directing attention to unmet treatment needs and priorities (mechanistic approaches to therapy, steroid minimisation, child and family involvement and enhanced social supports).Conclusions Children with SSNS and their caregivers expressed a dislike of steroids and a desire for individualised treatment protocols. Investigation into therapeutic alternatives for SSNS should integrate patients’ preferences, values and care priorities. |
| format | Article |
| id | doaj-art-be73894f05a44375b77e296acbe9ffa0 |
| institution | DOAJ |
| issn | 2044-6055 |
| language | English |
| publishDate | 2025-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-be73894f05a44375b77e296acbe9ffa02025-08-20T03:17:44ZengBMJ Publishing GroupBMJ Open2044-60552025-07-0115710.1136/bmjopen-2024-097602Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative studySusan Samuel0Kathryn King-Shier1Lorraine Hamiwka2Meghan Elliott3Augustina Okpere4Department of Pediatrics, The University of British Columbia, Vancouver, British Columbia, CanadaDepartment of Nursing, University of Calgary, Calgary, Alberta, CanadaDepartment of Pediatric Nephrology, Alberta Children’s Hospital, Calgary, Alberta, CanadaDepartment of Medicine, University of Calgary, Calgary, Alberta, CanadaDepartment of Pediatrics, University of Calgary, Calgary, Alberta, CanadaObjectives We explored the experiences of treatment strategies for steroid-sensitive nephrotic syndrome (SSNS) and care priorities among children living with the condition and their caregivers.Design A qualitative study using semistructured interviews. Data were analysed using reflexive thematic analysis. We coded transcripts in duplicate and developed themes that integrate key concepts across roles.Setting Southern Alberta, Canada.Participants A purposive sample of children aged 8–18 years, with SSNS and their caregivers from a paediatric nephrotic syndrome cohort.Results 28 individuals (10 children and 18 caregivers) participated in this study. All had experienced a relapse after initial diagnosis and steroid treatment. Participants identified how their experiences with SSNS treatments influenced their willingness to accept further steroids and other second-line agents. Findings are elaborated across the following four themes: (1) reluctant acceptance of steroids (steroid aversion, lack of personalised steroid dosing, altered self-regulation and acknowledging steroid effectiveness); (2) coping with unexpected relapses (repeating the cycle, restricted life participation and tempered optimism); (3) uncertainty about second-line therapies (striving for stability, cumulative burden of adverse effects and exploring alternatives) and (4) directing attention to unmet treatment needs and priorities (mechanistic approaches to therapy, steroid minimisation, child and family involvement and enhanced social supports).Conclusions Children with SSNS and their caregivers expressed a dislike of steroids and a desire for individualised treatment protocols. Investigation into therapeutic alternatives for SSNS should integrate patients’ preferences, values and care priorities.https://bmjopen.bmj.com/content/15/7/e097602.full |
| spellingShingle | Susan Samuel Kathryn King-Shier Lorraine Hamiwka Meghan Elliott Augustina Okpere Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study BMJ Open |
| title | Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study |
| title_full | Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study |
| title_fullStr | Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study |
| title_full_unstemmed | Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study |
| title_short | Patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid-sensitive nephrotic syndrome: a qualitative study |
| title_sort | patient and caregiver perspectives on treatment strategies and care priorities of childhood steroid sensitive nephrotic syndrome a qualitative study |
| url | https://bmjopen.bmj.com/content/15/7/e097602.full |
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