Exploring difficulties with methotrexate injection treatment (1.0)
Research type
Research Study
Full title
Exploring Parents’ Experience of Difficulties With Their Child’s Methotrexate Injection Treatment for Arthritis: An Interpretative Phenomenological Analysis
IRAS ID
266130
Contact name
Rachael Mellor
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
1 years, 8 months, 1 days
Research summary
How do parents experience difficulties with their child’s methotrexate injection treatment for arthritis?
Juvenile Idiopathic Arthritis (JIA) is a disease which affects children under 16 years old. It has a large impact on children who have the disease and their families. One of the best treatments for JIA is a drug called Methotrexate (MTX), which the child’s parent gives them through an injection. This drug is very good at treating JIA, but there can be psychological difficulties with it. These difficulties can cause the child to become upset, angry and fearful and can lead to the child not wanting to have the injection, and this means that their parents may have to hold them down for it to be given. Difficulties are common with MTX injections, but at the moment there is no research which has explored families' experience of living with them.
This study will explore parents’ experience of difficulties with MTX injections so that ways to best support families can be developed. We aim to speak to up to 12 parents who have experienced these difficulties and hope to carry out interviews, which will last around one hour, about their experience. Parents will be recruited through their child's routine clinical appointments at hospital. After the interviews we will use a type of qualitative analysis called interpretative phenomenological analysis to explore the patterns within the parents’ experiences.
Summary of study results:
Childhood chronic illnesses are on the rise, and the complex management of these illnesses often falls to parents. One such condition is Juvenile Idiopathic Arthritis (JIA), an autoimmune condition, causing inflammation and pain across joints, which can have a negative impact on a young persons wellbeing, often referred to as quality of life. The illness is commonly treated using an medication, Methotrexate. However, Methotrexate can often have some unpleasant side effects such as fatigue, nausea and lack of appetite. These side effects may be challenging for both young people and their families and lead to psychological distress.
This research aimed to understand the experiences of parents who give this medication, and also aimed to understanding the emotional and practical impact on parents, and how this may then impact the young person. The research aimed to provide recommendations as to how clinicians could support parents, to ensure better overall quality of life for young people with JIA and their families.
To do this, nine interviews were held with parents of children with JIA who took Methotrexate and had been experiencing difficulties with this. These interviews were then analysed.
The results of highlight the difficult nature of Methotrexate, and the challenges parents and young people face in taking this medication. Five major themes emerged, including “The Parent- Carer”; “the Child at the Centre”; “The Role of the Hospital”; “Our Lives with Methotrexate”; and “Coping with Methotrexate”.
Parents of children taking Methotrexate face a unique challenge in the difficulties they may face. 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 Methotrexate journey.Summary of Results
This research aimed to understand the experiences of parents who give their child Methotrexate for their Juvenile Idiopathic Arthritis. Whilst Methotrexate can be an important medication, we recognised that it can have some difficult side effects, and wanted to capture what this was like for parents, carers and families, and how they manage what can sometimes be a really challenging situation.We hope that by completing this research, we have helped inform clinicians within the hospitals, and future researchers about what this medication is like for families beyond the hospital walls, and how clinicians can best provide support when it is needed.
Overall, we completed nine interviews and pulled together these results to identify common experiences across participants. What we found, really highlighted the significant challenges some families experience with Methotrexate. We identified five major themes overall.
The Parent-Carer
It was clear that as parents of children with JIA, you so often have to step into a dual role of being both a parent and a carer, where you are expected to complete the tasks of both roles. However, this can be really hard to manage at times, and I heard lots of examples of the daily challenges of having this dual role. It really came across how challenging it is to manage this at times, and the emotional impact of this on you as parents, became really clear.
The Child at the Centre:
It was also really clear that there are many worries over the impact and longer-term implications for you child, such as worries about holidays, their social life, and school performance. However, there was often a push and pull between parent and child, as the child understandably wanted to remain in control- and yet it was equally important that they receive their Methotrexate. There was, at times, the sense that giving Methotrexate felt like the wrong thing to do, and it was understandably difficult to manage these feelings at times.
The Role of the Hospital
It was good to hear stories of how supportive the hospital has been at times. While they are helpful in answering questions and providing support, parents also talked about the sense that taking the Methotrexate home, was very different to the clinical environment of the hospital. There were also questions about whether you would have liked to have had more information about potential negative effects of Methotrexate, in case your child experienced them, rather than receiving the information after the difficulties began.
Our Lives with Methotrexate
When hearing about your experiences with Methotrexate, it became clear that it had a real impact on your day to day lives. We identified that the way parents and young people might feel about Methotrexate can be varied, and sometimes Methotrexate was almost like another person, that had to be brought along to school, holidays or family events. At times, this may have led you to consider skipping Methotrexate or stopping this altogether. However there also seemed to be an acceptance of sorts alongside the struggle, that Methotrexate was necessary for your child, but that this could feel like a roller coaster at times.
Coping with Methotrexate
I received many illustrations of the creative ways parents would help their children cope with the Methotrexate side effects. However, we also heard how so often for families the strategies suggested just don’t seem to work, leaving young people and parents really struggling. It was also apparent that many children cope with the Methotrexate but performing their “ritual” around the Methotrexate and this helped them to cope in the moment.
What is the bigger picture and next steps?
Parents of children taking Methotrexate face a unique challenge in the difficulties they may face. The results of this research not only have illustrated some of these difficulties but have also raised questions about 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 Methotrexate journey. It also has laid the foundation for future research to examine these difficulties further, with a view to understanding what contributes to these struggles and what might help children and young people to cope.
This research project has been discussed with rheumatology teams at both recruiting hospitals and discussions have centred around access to support, the provision of peer support, and the timing and availability of information for parents. This paper will also be submitted for publication.REC name
East Midlands - Derby Research Ethics Committee
REC reference
20/EM/0007
Date of REC Opinion
8 Jan 2020
REC opinion
Favourable Opinion