Juvenile Idiopathic Arthritis: Quality of Life and Parent Experiences of Giving Methotrexate Injections

Background: Juvenile Idiopathic Arthritis (JIA) is a chronic autoimmune condition, that causes joint pain and inflammation in young people. A diagnosis of JIA brings with it a unique set of challenges including treatment regimes, parental stress, and physical limitations. Although there is no cure, it is typically managed with immunosuppressant medication, the most common being the medication Methotrexate (MTX). However, whilst MTX is the recommended gold standard treatment (NICE, 2014) it can be challenging to administer and the commonly associated side effects, such as significant nausea, can lead to emotional difficulties and have a negative impact on a young person’s Quality of Life (QoL), however without it, there can be long term implications to health and QoL. The role of supporting a young person with these difficulties often lies with the parents, who play a crucial role in supporting a young person practically and emotionally. Despite this, little is known about the QoL for young people with JIA, the experiences of parents supporting their child with treatment, and how best clinicians could support them. This thesis was developed based on the experiences of clinical staff working within a JIA clinic, who were interested in these difficulties and how best to support these families. Aims: First, this thesis aims to better understand the QoL for young people living with JIA through a systematic review of the evidence to date. Second, the thesis will explore the experiences of parents who administer MTX to their children as a treatment for JIA, with a view to better understanding the role of the parent in supporting the QoL of their child. Methods: A systematic review was conducted, and 14 quantitative papers were synthesised using narrative synthesis. A further empirical paper used Interpretative Phenomenological Analysis to analyse nine parent interviews. Results: The systematic review highlighted lower than optimal QoL in young people with JIA. These results should however be interpreted with caution as the review also identified significant limitations with poor reliability and validity of the tools used to measure QoL in this context. The empirical paper highlighted the adversarial nature of MTX as a treatment regimen for young people, and the challenges parents face in supporting their child to take this medication. Five major themes emerged from the qualitative study: including “The Parent-Carer”; “The Child at the Centre”; “The Role of the Hospital”; “Our Lives with Methotrexate”; and “Coping with Methotrexate”. These themes demonstrate the high emotional demand placed on parents of children with JIA, and the difficulties families have coping with MTX. Clinical and research implications are discussed. Conclusion: This thesis identifies several theoretical and practical challenges in assessing the QoL of young people with JIA. QoL appears to be negatively impacted, however the findings highlight a lack of reliable and valid measurement tools to assess this and as such clinicians need to be mindful of how best to assess and interpret this in their work with these families. Without treatment, young people may experience poorer JIA outcomes and a worse overall QoL. As MTX is the gold standard treatment for JIA, it’s vital we understand these difficulties so appropriate support may be put in place. Parents of children taking MTX face a unique challenge in the difficulties they may experience, therefore thought must be given to the availability and timing of support and resources that are given to parents, and the crucial nature of this in supporting the family as they undergo their MTX journey