Apr 23 2019 Posted: 14:24 IST

The Centre for Pain Research at NUI Galway is currently recruiting adolescents aged between 12–18 years with Juvenile Idiopathic Arthritis (JIA) in Ireland and their parents, to take part in an online self-management programme. The aim of this programme is to empower young people with JIA to self-manage their condition.

Juvenile Idiopathic Arthritis is a chronic condition where the immune system mistakenly attacks the body’s tissues, causing inflammation in the joints and potentially other areas of the body. It is the most common childhood rheumatic disease. In Ireland, 1,100 children and adolescents live with JIA and, according to Arthritis Ireland, over 100 children are newly diagnosed annually. The disease course can be unpredictable and children often experience symptoms that restrict physical and social interactions and negatively impact health-related quality of life. The Paediatric Rheumatologist-to-patient ratio in Ireland is the second lowest in Europe, which makes accessing care particularly difficult.

The NUI Galway project will test an Irish adaptation of a Canadian online programme for managing arthritis combined with a novel peer mentoring programme. This programme will help teenagers learn to make decisions about their health, and meet and be inspired by other young people living with arthritis. Topics covered within the programme include managing symptoms, coping strategies, maintaining a healthy lifestyle and planning for the future. Teenagers who have gone through the programmes in Canada showed improvements in their ability to take care of their own health, their understanding of arthritis, and they have less pain.

Dr Hannah Durand, postdoctoral researcher at the Centre for Pain Research in NUI Galway, says: “While individually, both the self-management and peer mentoring programmes have been proven effective in improving JIA-related knowledge and self-management, they have never been combined nor have previous trials allowed individual tailoring, which is believed crucial to more effectively meet adolescents’ needs. This pilot trial will test the usability and the effectiveness of this combined programme for adolescents in Ireland.

“Online programmes have the potential to increase access to evidence-based supports for teens living with JIA across the country. This pilot trial will provide us with critical information about what works for teens in Ireland specifically. The end product will be a culturally appropriate clinical tool developed in partnership with adolescents with JIA, their parents, health professionals and JIA organisations that will overcome current barriers to accessing self-management care and peer support.”

For further information, please contact Dr Hannah Durand at painresearch@nuigalway.ie or phone at 091 495831.

For more about the Centre for Pain Research, visit: http://www.nuigalway.ie/centre-for-pain-research/

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