POS0035-PARE PARENTS EXHIBIT A RANGE OF EMOTIONS FOLLOWING THEIR CHILD’S DIAGNOSIS OF JUVENILE IDIOPATHIC ARTHRITIS: RESULTS FROM THE JIA VIP RESEARCH PANEL
Authors: R. Beesley, G. Vines, R. Beesley
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Juvenile Idiopathic Arthritis (JIA) is a heterogenous group of autoimmune disorders characterised by chronic joint inflammation of unknown aetiology lasting 6+ weeks, with onset before the age of 16. Awareness that children and young people (CYP) can get arthritis is low and the impacts on patients well recognised, but there is currently limited information about the initial impact on a family when they are told their child has JIA. <h3>Objectives:</h3> To identify the emotions that parents of CYP felt when their child was first diagnosed with JIA. <h3>Methods:</h3> Parents of CYP with a diagnosis of JIA were invited to complete a short online questionnaire as part of the JIA VIP Research Panel. The Panel securely retains demographic information for participants, allowing research questionnaires to be much shorter and to reduce the burden on respondents, and supports a fast turnaround for surveys. Participants gave informed consent prior to taking part, and patient partners provided input into the design, development and analysis of this study. Respondents were asked to provide one word that summarised how they felt when their child was first diagnosed with JIA. Responses were coded to one of Ekman's six basic emotions. <h3>Results:</h3> In total, 102 respondents completed the survey, with 70 (69%) parents of female CYP who had a median age of 10 years; this constituted a response rate of over 80%. Of these, 8 felt relief (which falls into Ekman's basic emotion of 'Happiness'), with parents who were previously aware that CYP could get arthritis more likely (25% compared to 4% of parents who were not aware, p=.001, chi2). In addition, 16 expressed surprise. However, the majority of respondents felt a range of negative emotions (Figure 1), with the category 'Sadness' being dominant. The most frequently cited feeling was 'Devastated' (17% of all responses), falling into the category of 'Sadness'. The choice of words (Figure 2) highlighted the strength of emotion experienced by parents, particularly given these were unprompted open-text responses. Despite there being no known way of preventing the onset of JIA, a number of respondents felt 'guilt' when their child was first diagnosed. <h3>Conclusion:</h3> This study highlights the range of emotions that families experience when first told their child has JIA – a chronic debilitating autoimmune condition for which the effectiveness of treatment and likely clinical, physical, emotional and sociological outcomes are unknown and unpredictable at the time of diagnosis. Unsurprisingly, the majority of parents experience negative emotions such as shock, anxiety and sadness as they come to terms with the weight of the diagnosis. Whilst the causes of JIA are complex and multifactorial, it is apparent that some parents erroneously carry a sense of guilt for their child's condition. The support of national and international patient organizations such as Juvenile Arthritis Research can help alleviate that through peer support, targeted intervention, awareness raising, and support resources and information through both online and physical support packs. Finally, with this first study using the JIA VIP Research Panel, the Panel has demonstrated a fast turnaround for survey-based research, with reduced burden on participants and high response rates. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>