From Symptom Onset to Diagnosis:a critical exploration into the experiences of young people with Juvenile-onset Systemic Lupus Erythematosus
type: CreativeWork
description: Juvenile Systemic Lupus Erythematosus (JSLE) is a life-long condition affecting 6-30 per 100,000 children and young people per year, depending on ethnicity, in the UK (Papadimitraki & Isenberg 2009). Symptoms include fatigue, tiredness, malar rash, joint problems, headaches and kidney problems. There is a paucity of literature relating to the experiences of young people before and during diagnosis of JSLE. An understanding of young people’s experiences and the issues relevant to them could help improve outcomes and facilitate the development of standards of care in JSLE. The aims of the study were to: (1) describe the journey from onset of symptoms to diagnosis in JSLE from a young person’s perspective by exploring the stories they tell; and (2) ascertain key points, if any, in the journey to diagnosis to generate deeper insight into access to care for young people with JSLE. This practitioner-researcher study used an exploratory qualitative approach. The setting was the UK tertiary centre for paediatric rheumatology in which the researcher works. The study utilised audio-recorded, in-depth interviews with eight young people (aged 12-19 years) with JSLE who told their story of their own ‘journey to diagnosis’. Parental consent was obtained for their child’s participation for young people aged under 16 years and assent was gained from every young person under the age of 16. Those young people aged 16 and above provided their own consent in accordance with ethical guidelines. The audio-recordings were transcribed and the transcripts were subjected to thematic analysis. The researcher maintained a fieldwork diary and used a reflexive approach throughout the study. Four main themes were generated and these themes are linked by a meta-theme ‘passing of time’. Although evident across all the themes, the ‘passing of time’ was not a static concept as it evolves and changes and influences the young people’s experiences. The themes are chronologically ordered reflecting the y…
abstract: Juvenile Systemic Lupus Erythematosus (JSLE) is a life-long condition affecting 6-30 per 100,000 children and young people per year, depending on ethnicity, in the UK (Papadimitraki & Isenberg 2009). Symptoms include fatigue, tiredness, malar rash, joint problems, headaches and kidney problems. There is a paucity of literature relating to the experiences of young people before and during diagnosis of JSLE. An understanding of young people’s experiences and the issues relevant to them could help improve outcomes and facilitate the development of standards of care in JSLE. The aims of the study were to: (1) describe the journey from onset of symptoms to diagnosis in JSLE from a young person’s perspective by exploring the stories they tell; and (2) ascertain key points, if any, in the journey to diagnosis to generate deeper insight into access to care for young people with JSLE. This practitioner-researcher study used an exploratory qualitative approach. The setting was the UK tertiary centre for paediatric rheumatology in which the researcher works. The study utilised audio-recorded, in-depth interviews with eight young people (aged 12-19 years) with JSLE who told their story of their own ‘journey to diagnosis’. Parental consent was obtained for their child’s participation for young people aged under 16 years and assent was gained from every young person under the age of 16. Those young people aged 16 and above provided their own consent in accordance with ethical guidelines. The audio-recordings were transcribed and the transcripts were subjected to thematic analysis. The researcher maintained a fieldwork diary and used a reflexive approach throughout the study. Four main themes were generated and these themes are linked by a meta-theme ‘passing of time’. Although evident across all the themes, the ‘passing of time’ was not a static concept as it evolves and changes and influences the young people’s experiences. The themes are chronologically ordered reflecting the y…
author: Lloyd, Olivia Claire
language: en
keywords: A300 - Clinical medicine
date published: 2014-06
date modified: 2026-07-24T01:35:53Z
provider: University of Central Lancashire
publisher: Networked Digital Library of Theses and Dissertations
type: WebPage
source organization: University of Central Lancashire