Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study

TL;DR

This study explores the challenges and experiences of parents of children with Juvenile Dermatomyositis to improve patient-centered care.

Contribution

The study provides new qualitative insights into the lived experiences of parents of children with JDM.

Findings

Parents reported fear, desperation, and frustration due to delayed diagnosis and complex healthcare navigation.

Family routines were disrupted, with financial strain and emotional loss impacting the whole family.

Parents emphasized the need for better support systems to manage the long-term uncertainty of JDM.

Abstract

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.

Semi-structured interviews (face-to-face, telephone) were conducted with parents of children with JDM from three centres in Australia. Transcripts were analysed thematically.

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).

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.

The online version contains supplementary material available at 10.1186/s12969-025-01079-2.

Figures