Systemic Lupus Erythematosus - Children and young people’s experiences

Childhood onset systemic lupus erythematosus (cSLE) is a multi-system autoimmune disease that impacts on the daily life of children and young people and their family. Two projects aim to identify and describe the experiences and perspectives of children, young people and their family’s through an integrative literature review and a qualitative research study using family group interviews.

Project 1

An integrative review aimed to describe the experiences and perspectives of children and young people living with cSLE. Relevant empirical research published in peer-reviewed journals from 2000 to 2021, written in English were identified through electronic searches of Scopus, CINAHL, Medline via PubMed and PsycInfo via Ovid databases. Nineteen studies involving more than 1400 participants were included. Study quality was assessed using the Mixed Methods Appraisal Tool.

Results

Four themes and 14 sub-themes were identified: challenging symptoms (disruptions and challenges, keeping up appearances, unpredictability, and tired and sad), medicines and side effects (dreaded steroids, conflicted feelings, and medication adherence), ways of coping (family, friends and groups, relationships with health providers, and maintaining positivity), and complicated life (school, sports and social, giving things up, and quality of life). Conclusions: While cSLE shares many similarities with adult-onset SLE, an awareness of the differences in experiences and perceptions of children and young people is crucial. The significant psychological and social impact of cSLE and its treatment necessitates a comprehensive, holistic approach to managing care that considers the unique needs of children and young people.

Implications

Future research is needed to explore and understand children and young people’s experiences, and their support needs more fully to direct practice, research, policy and knowledge.

_{Article is currently being reviewed for publication in the Journal of Pediatric Nursing.}

Project 2

This qualitative interpretive description study aims to explore the perceptions and experiences of 6 children/young people and their families (n=12-15) who live with jSLE. Aims include exploring perceptions around day to day life with SLE including quality of life, self-management,  medication and treatment adherence, support systems and strategies for coping. In addition, how are children/young people supported to develop self-management responsibility, including involvement in treatment decision making and becoming independent managers of their own health.

_{Data collection is still underway for this project 2 and findings will be provided here once complete.}