P55 Improving parental knowledge and confidence in managing a child with JIA

Abstract

Abstract Background An MDT-led educational class for parents of children newly diagnosed with JIA was developed with the aims of improving parental knowledge and confidence in managing a child with JIA. Our clinical observations were that a number of our patients had inaccurate ideas of what JIA was, three to six months into treatment. This is in-line with studies indicating that memory for medical information is often poor and inaccurate especially when the patient is anxious. Research also indicates the importance of patients developing an understanding of the condition and treatment which can aid in a number of improved outcomes including adherence. Our aim was to provide parents with an opportunity to increase their knowledge regarding JIA, addressing the medical and psychological management in a relaxed environment separate from a clinic appointment, without their children present. Several families had also requested to meet other parents for peer support and practical advice. Methods Parents of children newly diagnosed with JIA were invited to attend a session held in the evening at the NOC. Sessions were also conducted by the team at outreach clinics throughout the region. The programme was tailored to the child’s developmental stage and included information about JIA and its management from the advanced nurse specialist, physiotherapist, occupational therapist, paediatric psychologist and an experienced parent. Prior to the session, parents completed a short questionnaire to assess their confidence in managing their child’s condition and their understanding of JIA and treatment. Responses were measured on a ten point VAS scale. This was then repeated on completion of the session. Qualitative data regarding parent experience was also captured. Results Due to the large geographical area, attendance was approximately 50%. Parents’ understanding about JIA and treatment on average increased 2.6 points on VAS scale, parent’s confidence in managing their child increased on average 2.9 points. Parents reported the sessions were useful to explore what support is available, information regarding future management, importance of exercise, the emotional and psychological impact of JIA and how to manage it. 100% of parents reported their pre session aims were met. Conclusion Parental knowledge and confidence in managing their child’s condition was shown to increase in all those who attended, demonstrated by increases in VAS scores. Sessions allowed parents to access information from specialist paediatric rheumatology professionals and meet with peers in a relaxed environment. Consideration is currently being given to the use of social media to boost attendance through a virtual session. We are planning to follow-up parents to see if the increase in VAS scores is maintained Conflicts of Interest The authors declare no conflicts of interest.