Related Experiment Video
Updated: Jun 1, 2026
Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Perspectives and experiences of parents of children with juvenile dermatomyositis: a semi-structured interview study
Amy Helen Kelly1,2, Ayano Kelly3,4,5, Davinder Singh-Grewal6
1Department of Rheumatology, Campbelltown Hospital, Campbelltown, NSW, Australia. Amy.Kelly@health.nsw.gov.au.
Insights
Parental caregivers of children with Juvenile Dermatomyositis (JDM) experience significant distress, disruption, and uncertainty. Addressing these challenges and providing support are vital for optimizing health outcomes in JDM patients.
Area of Science:
- Pediatric Rheumatology
- Childhood Inflammatory Diseases
- Caregiver Experiences
Background:
- Juvenile Dermatomyositis (JDM) is a rare childhood inflammatory disease.
- Management of JDM presents challenges for clinicians and caregivers.
- Parental caregiver perspectives in JDM are under-researched.
Purpose of the Study:
- To describe the experiences of parents of children with JDM.
- To inform person-centred care strategies for JDM management.
Main Methods:
- Semi-structured interviews conducted with parents of children with JDM across three Australian centers.
- Face-to-face and telephone interview formats utilized.
- Thematic analysis of interview transcripts.
Main Results:
- Nineteen parents of 17 children with JDM participated.
- Six key themes emerged: fear and desperation, feeling lost in the health system, disrupted family routines, grieving losses, managing an uncertain future, and gaining confidence.
- Parents reported delayed diagnosis, distress, and uncertainty throughout the treatment journey.
Conclusions:
- Delayed diagnosis of JDM contributes to caregiver distress.
- Support mechanisms are crucial for navigating the healthcare system and managing family dynamics.
- Optimizing health outcomes for children with JDM requires addressing caregiver fears and providing tailored support.
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.
More Related Videos
09:32Resolving Water, Proteins, and Lipids from In Vivo Confocal Raman Spectra of Stratum Corneum through a Chemometric Approach
Published on: September 26, 2019
06:16Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
Related Concept Videos
01:30Assessment of Airway, Skin Color, and Use of Accessory Muscles
Introduction
The initial evaluation of a patient's respiratory system...
01:11Papillary Dermis
The dermis might be considered the "core" of the integumentary system, as distinct from the epidermis and hypodermis. It contains blood and lymph vessels, nerves, and other structures, such as hair follicles and sweat glands. The dermis is made of two layers of connective tissue that comprise an interconnected mesh of elastin and collagenous fibers, produced by fibroblasts.
Papillary Layer
The papillary layer is made of loose, areolar connective tissue, which means the collagen and...
01:14Changes in Skin Color: Clinical Perspectives
Albinism
Albinism is a genetic disorder that affects (completely or partially) the coloring of skin, hair, and eyes. The defect is primarily...
01:30Inflammatory Bowel Disease III: Diagnostic Studies and Management I-Nutritional Therapy
Diagnostic studies
A colonoscopy is the definitive screening test, distinguishing ulcerative colitis from other colon diseases with similar symptoms. During a colonoscopy test, inflamed mucosa with exudate ulcerations can be observed, and biopsies are taken to determine the histologic characteristics of the colonic...
01:26Nephrotic Syndrome II : Assessment and Medical Management
01:23Influence of Parents and Peers on Identity
Parental Influence on Identity Development
Parents serve as primary guides and managers in an adolescent's life, offering support instrumental in decision-making and personal growth. This guiding role...