Background: Marfan syndrome (MFS) is a heritable connective tissue disease caused by a defect in FBN1. The diagnosis is based on the revised Ghent criteria. The main features involve the cardiovascular, musculoskeletal, ophthalmic, pulmonary systems and facial features. Although the clinical manifestations of MFS in children are thoroughly addressed in several studies, literature on the impact of MFS on daily functioning is restricted to pediatric advice on sports and leisure participation. Therefore, the full impact of MFS on daily functioning remains unclear. The aim of this qualitative study was to explore parents' perspectives on the impact of MFS on daily functioning of children with MFS aged 4-12 years, themselves and family regarding functional performance, activities, participation, personal and environmental factors, and disease burden. Methods: In this qualitative study parents participated in individual semi-structured interviews (n = 10) and 3 focus groups (n = 5, n = 5 and n = 6). Meetings were transcribed, and data were analyzed using thematic analysis. Meaningful concepts were coded, and concepts concerning children with MFS were linked to the International Classification of Functioning, Disability and Health for Children and Youth. Thereafter themes were identified and interpreted.Results: Parents reported their children could not keep up with peers because of fatigue, pain and physical impairments. Children experienced participation restrictions in school, sports, play and other leisure activities. Parents reported their child as being different due to physical appearance, which provoked unsupportive attitudes. Parental burden was caused by high care needs, lack of support, a limited social life, and concerns about the child's development. Family burden was caused by adjusted and complex family schedules, other family members with MFS, and reproductive planning decision-making, whereas family cohesiveness and caring were positively perceived factors. Conclusions: Parents perceived a large impact of MFS on daily functioning of their children with MFS, themselves and their family. More awareness among all professionals involved in the care of children with MFS and their families is needed so that professionals can address their support needs and provide tailored interventions, rehabilitation and/or educational programs to empower and improve daily functioning of the children, parents and family.
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Music performance anxiety (MPA) is one of the most reported psychological problems among musicians, posing a significant threat to the optimal performance, health, and psychological wellbeing of musicians. Most research on MPA treatment has focused on reducing symptoms of performance anxiety, but complete “cures” are uncommon. A promising addition or alternative that may help musicians enhance their performance under pressure, despite their anxiety, is pressure training (PT). In other high-pressure domains, such as sports and police work, pressure training has been proven effective in reducing choking and enhancing performance quality under pressure. Therefore, the aim of this narrative review is to explore the potential of pressure training in music settings. Specifically, we first provide a theoretical overview of current models explaining performance declines due to anxiety. Second, we discuss the current state of research on the effectiveness and application of pressure training in sports and police work as well as recent developments in pressure training interventions for music settings. While there is a limited number of studies investigating the effectiveness of pressure training on musicians' performance quality, research focusing on musicians' experiences has shown that pressure training can be particularly beneficial for enhancing performance skills, preparing for performances, and managing performance anxiety. Based on the reviewed literature, the final section points out suggestions for future research as well as recommendations for musicians, teachers, and music institutions for practical applications.
This book provides a sample of studies and concepts created within the project Media ENriched Sport ExperienceS (MENSES). A project powered by Hilversum Media Campus, ZIGGO and Breda University of Applied Sciences. MENSES aims to create new media enriched sport experiences, by means of introducing innovative digital concepts combining media entertainment and live sport content. It wants to share building stones and blueprints to be accessed in Hilversum. As such it will help organizations to answer the question how live and broadcasted sport experiences can be enriched by means of new digital strategies. By combining interaction, transformation and data enrichment, the mediated and live sport events should be turned into a memorable sport experience