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 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 fo

SUBMITTER: Kelly AH 

PROVIDER: S-EPMC11951517 | biostudies-literature | 2025 Mar

REPOSITORIES: biostudies-literature