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The Capital Region of Denmark - a part of Copenhagen University Hospital

Facilitators and Barriers of Participation in "Uptime" Activities in Girls and Women With Rett Syndrome: Perspectives From Parents and Professionals

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Rett syndrome (RTT) is a rare neurodevelopmental disorder usually affecting females. It is associated with intellectual and multiple disabilities leading to a high level of dependency in all aspects of daily living including participation in physical activities. This study explored facilitators and barriers to "uptime" (non-sedentary) activities in Danish girls and women with RTT as perceived by parents and professionals using focus groups. Through thematic analysis, one central theme emerged: a constant balance to do the best thing for the girl or woman. Within the central theme, five subthemes of facilitators and barriers were identified relating to the individual and the physical, organizational, social, and attitudinal environments. Environmental barriers can be reduced through policy and management-level changes in health promotion and strong advocacy of physical activity by health professionals. Targeting both facilitators and barriers of "uptime" activities enables the planning and implementing of health-promoting interventions in individuals with RTT.

Original languageEnglish
JournalQualitative Health Research
Issue number4
Pages (from-to)609-619
Number of pages11
Publication statusPublished - 2019

Bibliographical note


    Research areas

  • Focus groups, health promotion, intellectual and multiple disabilities, physical activity, sedentary behavior, thematic analysis, Health Promotion/methods, Parents/psychology, Exercise/psychology, Humans, Middle Aged, Focus Groups, Child, Preschool, Male, Child Day Care Centers/organization & administration, Rett Syndrome/psychology, Young Adult, Adolescent, Denmark, Adult, Female, Interviews as Topic, Child

ID: 55558986