P15 Development of JIA Matters: a parent-led peer support network across England and Wales in collaboration with paediatric rheumatology centres
Authors: Earle Emily 
Published: September 2019

Background

Peer support, which can take many forms, involves people sharing knowledge, experience and practical help. It is recognised as a useful mechanism for families living with children who have a long-term condition, such as juvenile idiopathic arthritis (JIA). It is often provided by voluntary organisations. While some forms of peer support were established for families living with JIA in the United Kingdom (UK), there were no local support groups in a number of locations. Given that over 12,000 families are living with JIA, the need for access to peer support for families became evident. Therefore, the aim was to establish one local support group for JIA families in London; while identifying whether any other families were organising similar activities elsewhere in England and Wales.

Methods

The initial concept was discussed and endorsed by a group of paediatric rheumatology clinicians and the British Society for Paediatric and Adolescent Rheumatology (BSPAR – part of the British Society for Rheumatology) Parent Group. Policies and guidelines for the network and local support groups were then created. The Juvenile Arthritis Parents and Families UK Facebook group were consulted via a parent-led request to identify who lived in the London area. Subsequently, a JIA Matters North and West London closed Facebook group was created, and families from the area were invited to join. Once several members had joined, the JIA Matters Co-ordinator arranged a local, face-to-face meet-up for families. Using this model, paediatric rheumatology centres across different counties in England and Wales were approached by JIA Matters to recommend parents/carers who could be suitable parent/carer representatives to lead on establishing local groups.

Results

Between July 2017 and March 2019, 36 JIA Matters groups were established across England and Wales. Some groups have rapidly developed, while others remain conservative. Attendance at local, face-to-face meet-ups have been variable, with some groups experiencing difficulties in encouraging people to attend. The first local, face-to-face meet up of the NW London group was attended by seven families. Some paediatric rheumatology centres have been responsive and proactive in using JIA Matters and have begun to engage with the JIA Matters Coordinator to help enhance family engagement within local activities. To aid the sustainability of the network across the country, JIA Matters was incorporated into the Children’s Chronic Arthritis Association (CCAA) in March 2019, strengthening the national reach of the network to help ensure families across the country have access to local peer support.

Conclusion

JIA Matters has demonstrated how parent-led initiatives on a local level can indeed influence activities on a national level. From modest aims, JIA Matters has evolved to connect families living in the same geographic area, while promoting family engagement in research, service development and activities within paediatric rheumatology centres.

Conflicts of Interest

The authors declare no conflicts of interest.