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

Stahlhut, MichelleLund University,Lunds universitet,Människan i rörelse: hälsa och rehabilitering,Forskargrupper vid Lunds universitet,Human Movement: health and rehabilitation,Lund University Research Groups,Copenhagen University Hospital (author)

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.

Esbensen, Bente AppelUniversity of Copenhagen,Copenhagen University Hospital(Swepub:lu)omv-bap (author)
Larsen, Jane LundingCopenhagen University Hospital (author)
Bisgaard, Anne MarieCopenhagen University Hospital (author)
Downs, JennyUniversity of Copenhagen (author)
Nordmark, EvaLund University,Lunds universitet,Människan i rörelse: hälsa och rehabilitering,Forskargrupper vid Lunds universitet,Human Movement: health and rehabilitation,Lund University Research Groups(Swepub:lu)sgym-eno (author)
Människan i rörelse: hälsa och rehabiliteringForskargrupper vid Lunds universitet (creator_code:org_t)

In:Qualitative Health Research: SAGE Publications29:4, s. 609-6191049-73231552-7557

By the author/editor: Stahlhut, Michel ...; Esbensen, Bente ...; Larsen, Jane Lun ...; Bisgaard, Anne M ...; Downs, Jenny; Nordmark, Eva

About the subject

MEDICAL AND HEALTH SCIENCES: MEDICAL AND HEAL ...; and Health Sciences; and Occupational The ...

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