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

Research output: Contribution to journalArticle


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.


External organisations
  • Copenhagen University Hospital
  • University of Copenhagen
Research areas and keywords

Subject classification (UKÄ) – MANDATORY

  • Occupational Therapy


  • Focus groups, health promotion, intellectual and multiple disabilities, physical activity, sedentary behavior, thematic analysis
Original languageEnglish
Pages (from-to)609-619
JournalQualitative Health Research
Issue number4
Early online date2018 Oct
Publication statusPublished - 2019
Publication categoryResearch