Young People and Their Families' Perspectives of Living With Juvenile Systemic Lupus Erythematosus: An Exploratory Qualitative Study

Abstract

Background: Juvenile systemic lupus erythematosus is a rare autoimmune condition with wide-ranging physical, psychological and social impacts on children and young people (CYP) and their families. This study explored the perspectives and experiences of young people with juvenile systemic lupus erythematosus and their families.

Methods: An exploratory qualitative study using interpretive description methodology was conducted. Six young people aged nine to fourteen years, all female, and ten family members (five mothers, three fathers and two siblings) were recruited purposively from a tertiary paediatric rheumatology service in Auckland, Aotearoa New Zealand. Semi-structured family group interviews were audio-recorded, transcribed verbatim and analysed thematically.

Findings: Five themes were developed from the perspectives of CYP and their families: getting the right diagnosis; coming to terms with the diagnosis; managing medications; challenges and disruptions; and finding support in family and the healthcare team. CYP and families described lengthy and emotionally draining diagnostic journeys marked by repeated misdiagnosis and delayed recognition. Following diagnosis, families navigated significant emotional adjustment alongside the complexity of medication management. CYP experienced disruptions to schooling, social participation and daily life, including stigma related to visible symptoms. Family relationships, specialist healthcare teams and educational support through the Northern Health School were identified as key sources of support.

Discussion: The findings emphasise the complex challenges that extend beyond medical management. Family support and coordinated healthcare relationships were key protective factors.

Conclusion: The study highlights the importance of family-centered, culturally responsive care, timely diagnosis, nursing support to enhance adherence and integrated healthcare and education strategies to reduce psychosocial disruption.