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

Stahlhut, Michelle LU ; Esbensen, Bente Appel LU ; Larsen, Jane Lunding ; Bisgaard, Anne Marie ; Downs, Jenny and Nordmark, Eva LU (2019) In Qualitative Health Research 29(4). p.609-619
Abstract

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.... (More)

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.

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author
; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Focus groups, health promotion, intellectual and multiple disabilities, physical activity, sedentary behavior, thematic analysis
in
Qualitative Health Research
volume
29
issue
4
pages
609 - 619
publisher
SAGE Publications
external identifiers
  • scopus:85059558067
  • pmid:30304998
ISSN
1049-7323
DOI
10.1177/1049732318803358
language
English
LU publication?
yes
id
644508d2-6665-4673-a189-3f05a84dcb84
date added to LUP
2019-01-17 10:04:33
date last changed
2024-07-09 04:07:20
@article{644508d2-6665-4673-a189-3f05a84dcb84,
  abstract     = {{<p>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.</p>}},
  author       = {{Stahlhut, Michelle and Esbensen, Bente Appel and Larsen, Jane Lunding and Bisgaard, Anne Marie and Downs, Jenny and Nordmark, Eva}},
  issn         = {{1049-7323}},
  keywords     = {{Focus groups; health promotion; intellectual and multiple disabilities; physical activity; sedentary behavior; thematic analysis}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{609--619}},
  publisher    = {{SAGE Publications}},
  series       = {{Qualitative Health Research}},
  title        = {{Facilitators and Barriers of Participation in “Uptime” Activities in Girls and Women With Rett Syndrome : Perspectives From Parents and Professionals}},
  url          = {{http://dx.doi.org/10.1177/1049732318803358}},
  doi          = {{10.1177/1049732318803358}},
  volume       = {{29}},
  year         = {{2019}},
}