Evaluation of an Online Patient Education Program for Children and Young People with ME/CFS and their Parents within the BAYNET FOR MECFS Study

Abstract

Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) poses challenges for affected children and young people (CYP) and their parents. There is often a lack of knowledge about the illness. Education programs can help address this by providing knowledge and supporting the independent management of the condition. For this reason, two online education programs-one for affected CYP and one for their parents-were developed, implemented, and evaluated in terms of acceptance, format, and benefits. Methods A total of 24 CYP with ME/CFS, aged of up to 20 years, and their parents were recruited for this study. Of these 22 CYP with ME/CFS and 20 parents participated in the online education program. After development and conduct of the programs, six affected CYP were interviewed using written questions, which were answered via an audio device. Furthermore, six semi-structured interviews were obtained with parents. All parents also received an online questionnaire to evaluate the program. Data were analyzed using both quantitative and qualitative methods. Results Both CYP and their parents expressed overall satisfaction with the program, highlighting aspects such as knowledge acquisition or reinforcement and, importantly, the opportunity to connect with other affected CYP or their parents. The online format was also perceived very positively. Discussion The online education program met the expectations and needs of both affected CYP and parents regarding content and format. It facilitated exchange and provided practical knowledge. In this format, the online program appears to be a valuable component of care for those affected.