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

Michelle Stahlhut; Bente Appel Esbensen; Jane Lunding Larsen; Anne Marie Bisgaard; Jenny Downs; Eva Nordmark

doi:10.1177/1049732318803358

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

Michelle Stahlhut, Bente Appel Esbensen, Jane Lunding Larsen, Anne Marie Bisgaard, Jenny Downs, Eva Nordmark

Department of Clinical Medicine

1 Citation (Scopus)

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. 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 language	English
Journal	Qualitative Health Research
Volume	29
Issue number	4
Pages (from-to)	609-619
ISSN	1049-7323
DOIs	https://doi.org/10.1177/1049732318803358
Publication status	Published - 2019

Keywords

Focus groups
health promotion
intellectual and multiple disabilities
physical activity
sedentary behavior
thematic analysis

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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; Esbensen, Bente Appel; Larsen, Jane Lunding et al.
In: Qualitative Health Research, Vol. 29, No. 4, 2019, p. 609-619.

Research output: Contribution to journal › Journal article › Research › peer-review

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

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Keywords

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