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

Institut for Klinisk Medicin

1 Citationer (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.

Originalsprog	Engelsk
Tidsskrift	Qualitative Health Research
Vol/bind	29
Udgave nummer	4
Sider (fra-til)	609-619
ISSN	1049-7323
DOI	https://doi.org/10.1177/1049732318803358
Status	Udgivet - 2019

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10.1177/1049732318803358

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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.
I: Qualitative Health Research, Bind 29, Nr. 4, 2019, s. 609-619.

Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › peer review

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AU - Nordmark, Eva

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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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