Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study
Abstract Background Juvenile Dermatomyositis (JDM) is a rare, childhood inflammatory disease and its management can be challenging and confronting for both clinicians and caregivers. Little is known about the perspectives of parental caregivers of children with JDM. This study aimed to describe the...
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BMC
2025-03-01
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| Series: | Pediatric Rheumatology Online Journal |
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| Online Access: | https://doi.org/10.1186/s12969-025-01079-2 |
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| author | Amy Helen Kelly Ayano Kelly Davinder Singh-Grewal Jeffrey Chaitow Allison Jaure |
| author_facet | Amy Helen Kelly Ayano Kelly Davinder Singh-Grewal Jeffrey Chaitow Allison Jaure |
| author_sort | Amy Helen Kelly |
| collection | DOAJ |
| description | Abstract Background Juvenile Dermatomyositis (JDM) is a rare, childhood inflammatory disease and its management can be challenging and confronting for both clinicians and caregivers. Little is known about the perspectives of parental caregivers of children with JDM. This study aimed to describe the experiences of parents of children with JDM to inform person-centred care. Methods Semi-structured interviews (face-to-face, telephone) were conducted with parents of children with JDM from three centres in Australia. Transcripts were analysed thematically. Results Nineteen parents (15 mothers) of 17 children aged 8 to 21 with JDM participated. Six themes were identified. Rapid crescendo of fear and desperation (alarming deterioration, sudden realisation of seriousness, desperate for a diagnosis ), lost and unsupported in the health system (at the mercy of the medical team, frustrated at the lack of services, neglected priorities, protracted and painful search for answers), disrupting family routines (sibling neglect and loss, overloaded with a medicalised schedule, always on standby, burdened by financial strains), grieving what has been lost (missing the sunlight, struggling with the loss of physical function, disrupted schooling, changes in their child from steroid side effects), managing an uncertain future (bound to chronicity, fearing relapse, insecurity with transition to adult care), gaining confidence and motivation (strengthening partnerships with clinicians, growing maturity and independence, gaining hope from shared experiences). Conclusions The diagnosis of JDM is often delayed and caregivers of children with JDM report distress, disruption and uncertainty throughout their treatment journey with their child. Addressing these fears and establishing support mechanisms that help parents navigate their way through the medical system and support changing family dynamics are vital to optimise health outcomes for children diagnosed with JDM. |
| format | Article |
| id | doaj-art-df13f7c2a45349bf958c49043cb275d3 |
| institution | Kabale University |
| issn | 1546-0096 |
| language | English |
| publishDate | 2025-03-01 |
| publisher | BMC |
| record_format | Article |
| series | Pediatric Rheumatology Online Journal |
| spelling | doaj-art-df13f7c2a45349bf958c49043cb275d32025-08-20T03:41:12ZengBMCPediatric Rheumatology Online Journal1546-00962025-03-0123111010.1186/s12969-025-01079-2Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview studyAmy Helen Kelly0Ayano Kelly1Davinder Singh-Grewal2Jeffrey Chaitow3Allison Jaure4Department of Rheumatology, Campbelltown HospitalSchool of Clinical Medicine, University of New South WalesDepartment of Paediatric Rheumatology, Westmead Children’s HospitalDepartment of Paediatric Rheumatology, Westmead Children’s HospitalSydney School of Public Health, The University of SydneyAbstract Background Juvenile Dermatomyositis (JDM) is a rare, childhood inflammatory disease and its management can be challenging and confronting for both clinicians and caregivers. Little is known about the perspectives of parental caregivers of children with JDM. This study aimed to describe the experiences of parents of children with JDM to inform person-centred care. Methods Semi-structured interviews (face-to-face, telephone) were conducted with parents of children with JDM from three centres in Australia. Transcripts were analysed thematically. Results Nineteen parents (15 mothers) of 17 children aged 8 to 21 with JDM participated. Six themes were identified. Rapid crescendo of fear and desperation (alarming deterioration, sudden realisation of seriousness, desperate for a diagnosis ), lost and unsupported in the health system (at the mercy of the medical team, frustrated at the lack of services, neglected priorities, protracted and painful search for answers), disrupting family routines (sibling neglect and loss, overloaded with a medicalised schedule, always on standby, burdened by financial strains), grieving what has been lost (missing the sunlight, struggling with the loss of physical function, disrupted schooling, changes in their child from steroid side effects), managing an uncertain future (bound to chronicity, fearing relapse, insecurity with transition to adult care), gaining confidence and motivation (strengthening partnerships with clinicians, growing maturity and independence, gaining hope from shared experiences). Conclusions The diagnosis of JDM is often delayed and caregivers of children with JDM report distress, disruption and uncertainty throughout their treatment journey with their child. Addressing these fears and establishing support mechanisms that help parents navigate their way through the medical system and support changing family dynamics are vital to optimise health outcomes for children diagnosed with JDM.https://doi.org/10.1186/s12969-025-01079-2Juvenile dermatomyositisQualitative methodsInterviewsPatient-centred careCaregivers |
| spellingShingle | Amy Helen Kelly Ayano Kelly Davinder Singh-Grewal Jeffrey Chaitow Allison Jaure Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study Pediatric Rheumatology Online Journal Juvenile dermatomyositis Qualitative methods Interviews Patient-centred care Caregivers |
| title | Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study |
| title_full | Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study |
| title_fullStr | Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study |
| title_full_unstemmed | Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study |
| title_short | Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study |
| title_sort | perspectives and experiences of parents of children with juvenile dermatomyositis a semi structured interview study |
| topic | Juvenile dermatomyositis Qualitative methods Interviews Patient-centred care Caregivers |
| url | https://doi.org/10.1186/s12969-025-01079-2 |
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