G614(P) Tea and cake: an opportunity for young people and their parents/guardians to eat cake and share ideas. (May 2019)

• Record Type: Journal Article
• Authors: Bashton, D; O'Connor, L; Meyer, S; Gregorowski, A
• Is Part Of: Archives of disease in childhood. Volume 104:(2019)Supplement 2
• Page Start: A248
• Page End: A248
• Publication Date: 2019-05
• Subjects: Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2019-rcpch.594
• Languages: English
• ISSNs: 0003-9888

Abstract

Abstract : Background: The Treatment and Rehabilitation of Adolescents with Complex Conditions Service (TRACCS) identified the need for young people and parents/guardians to have a space for peer support from others experiencing the same or a similar journey in an informal setting where professionals were not the focus. The need for this support was voiced during psychoeducational groups run by the service and during 1:1 clinic sessions. Aims: To provide an informal client led forum for young people and parents/guardians to share ideas, experiences and provide feedback to the service, whilst eating cake. Methods: An invitation was sent to all young people cared for in the TRACCS at a tertiary adolescent chronic fatigue sydrome/Myalgic Encephalomyelitis (CFS/ME) service in a British city their parents/guardians. An invitation to the event was included with each clinic letter to young people assessed and treated either in the inpatient or outpatient setting. They self-selected whether they wished to attend by responding by e-mail to the team. Two afternoon events have been held at the hospital, each lasting 1.5 hours. Young people and their parents/guardians led ice-breakers which were used to encourage interaction to help everyone to get to know each other. Feedback was sent to the team from young people and parents/guardians via e-mail regarding the event. Results: 9 young people and 8 parents/guardians attended the first event, 10 young people 9 parents/guardians attended the second event. Young people were aged 14–19 years old. We obtained feedback via e-mail responses. : 'it was great to meet some other families…' 'it went so well and it helped so many' 'It was nice to see some faces we knew and chat to new people as well.' Conclusion: Due to the good attendance, positive feedback and continued interest from young people and parents/guardians about having the opportunity to meet others experiencing the same journey, and the positive effect this had on reducing their sense of isolation, three future events have been organised in the next 9 months.