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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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@article{5563b6d286e1498991fecc0407740216,
title = "Facilitators and Barriers of Participation in {"}Uptime{"} Activities in Girls and Women With Rett Syndrome: Perspectives From Parents and Professionals",
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.",
keywords = "Focus groups, health promotion, intellectual and multiple disabilities, physical activity, sedentary behavior, thematic analysis, Health Promotion/methods, Parents/psychology, Exercise/psychology, Humans, Middle Aged, Focus Groups, Child, Preschool, Male, Child Day Care Centers/organization & administration, Rett Syndrome/psychology, Young Adult, Adolescent, Denmark, Adult, Female, Interviews as Topic, Child",
author = "Michelle Stahlhut and Esbensen, {Bente Appel} and Larsen, {Jane Lunding} and Anne-Marie Bisgaard and Jenny Downs and Eva Nordmark",
note = "COPECARE",
year = "2019",
doi = "10.1177/1049732318803358",
language = "English",
volume = "29",
pages = "609--619",
journal = "Qualitative Health Research",
issn = "1049-7323",
publisher = "Sage Publications, Inc. Sage Publications Ltd",
number = "4",

}

RIS

TY - JOUR

T1 - Facilitators and Barriers of Participation in "Uptime" Activities in Girls and Women With Rett Syndrome

T2 - Perspectives From Parents and Professionals

AU - Stahlhut, Michelle

AU - Esbensen, Bente Appel

AU - Larsen, Jane Lunding

AU - Bisgaard, Anne-Marie

AU - Downs, Jenny

AU - Nordmark, Eva

N1 - COPECARE

PY - 2019

Y1 - 2019

N2 - 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.

AB - 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.

KW - Focus groups

KW - health promotion

KW - intellectual and multiple disabilities

KW - physical activity

KW - sedentary behavior

KW - thematic analysis

KW - Health Promotion/methods

KW - Parents/psychology

KW - Exercise/psychology

KW - Humans

KW - Middle Aged

KW - Focus Groups

KW - Child, Preschool

KW - Male

KW - Child Day Care Centers/organization & administration

KW - Rett Syndrome/psychology

KW - Young Adult

KW - Adolescent

KW - Denmark

KW - Adult

KW - Female

KW - Interviews as Topic

KW - Child

UR - http://www.scopus.com/inward/record.url?scp=85059558067&partnerID=8YFLogxK

U2 - 10.1177/1049732318803358

DO - 10.1177/1049732318803358

M3 - Journal article

C2 - 30304998

VL - 29

SP - 609

EP - 619

JO - Qualitative Health Research

JF - Qualitative Health Research

SN - 1049-7323

IS - 4

ER -

ID: 55558986