Physiotherapists perceived developing positive rapport facilitates participation in exercise among people with Prader-Willi Syndrome: a qualitative study

Shields, Nora; Westle, Andrew; Bennell, Kim L; Taylor, Nicholas F.

doi:10.1080/09638288.2019.1597176

Cited by 5 publications

(11 citation statements)

References 9 publications

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“…In these intervention studies, eight distinct PA interventions were assessed in one randomized controlled trial (RCT) [ 14 ], four non-randomized controlled trials [ 19 , 20 , 21 , 22 ] and three single-group intervention studies [ 8 , 23 , 24 ]. Six additional studies reported the effect of these eight interventions [ 13 , 15 , 16 , 25 , 26 , 27 ]. Among the five randomized or non-randomized controlled trials, two were rated as good-quality trials [ 14 , 21 ], two as a fair-quality trial [ 19 , 20 ], and two as poor-quality trials [ 22 ].…”

Section: Resultsmentioning

confidence: 99%

“…The weekly number of sessions ranged from one [ 22 , 24 ] to seven [ 20 ] and daily duration of exercise ranged from 4 min [ 22 , 24 ] to ≥6 h [ 23 ]. PA was supervised by PA instructors or physiotherapists in three studies [ 8 , 13 , 24 ], by parents in three studies [ 20 , 22 , 26 ] or was unsupervised in one study [ 19 ] (supervision not reported in one study [ 23 ]).…”

Section: Resultsmentioning

confidence: 99%

“…Given the relatively few studies included and their diversity in terms of population, interventions, and outcomes assessed, this review did not provide a quantitative analysis of findings. Since then, several studies were published [ 8 , 13 , 14 , 15 , 16 ], adding to the body of evidence on the effect of PA interventions in patients with PWS. Importantly, some of these studies described in detail the implementation process of the PA intervention [ 8 , 13 , 16 ], which is of great importance to facilitate their transferability in real-life settings.…”

Section: Introductionmentioning

confidence: 99%

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Physical Activity in Patients with Prader-Willi Syndrome—A Systematic Review of Observational and Interventional Studies

Bellicha

Coupaye

Mosbah

et al. 2021

JCM

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Physical activity (PA) is an important aspect of the management of patients with Prader-Willi syndrome (PWS). However, the day-to-day implementation of PA programs is particularly challenging in these patients. This systematic review aimed (1) to describe habitual PA and sedentary behavior and (2) to assess the effects of PA interventions and to describe their implementation process, in children and adults with PWS. A systematic search of controlled trials, single-group interventions, observational, and qualitative studies published up to December 2020 was performed. Twenty-five studies were included. Habitual PA was found to be lower in patients with PWS compared to controls without obesity or with non-syndromic obesity. Habitual PA was positively associated with lean body mass and bone parameters in children with PWS, and these finding were strengthened by intervention studies reporting an increase in both outcomes after a PA program. PA programs also improved physical function (muscle strength, walking distance, and coordination), without significant effect on weight and fat mass. Attendance to exercise sessions was usually high and no serious adverse effect was reported. In conclusion, supervised PA programs are beneficial for children and adults with PWS. Support should be provided to families to facilitate their implementation in real-life settings.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Physical Activity in Patients with Prader-Willi Syndrome—A Systematic Review of Observational and Interventional Studies

Bellicha

Coupaye

Mosbah

et al. 2021

JCM

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“…A critical factor influencing adherence and maintenance of any activity for individuals with PWS (therapy, exercise, dietary changes) is the rapport between the coach/therapist/dietician/physician and the individual with PWS. 19 Components of success for continuing participation in exercise include: clear communication with no ambiguity; provider willingness to adapt when necessary, so as to avoid a temper tantrum or task avoidance; and encouragement for continuation of the exercise routine by eliciting the individual's input into the types of exercise and goals of the exercise program. 19 Anecdotally, our group recently had 389 individuals with PWS (children through adults) complete a month-long plank and push-up challenge when given a goal of 5 pushups and a 30-second plank after 30 days of practice.…”

mentioning

confidence: 99%

“…19 Components of success for continuing participation in exercise include: clear communication with no ambiguity; provider willingness to adapt when necessary, so as to avoid a temper tantrum or task avoidance; and encouragement for continuation of the exercise routine by eliciting the individual's input into the types of exercise and goals of the exercise program. 19 Anecdotally, our group recently had 389 individuals with PWS (children through adults) complete a month-long plank and push-up challenge when given a goal of 5 pushups and a 30-second plank after 30 days of practice. This experience emphasizes the fact that these patients can and will do regular exercise with the correct motivation and empowerment.…”

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confidence: 99%

<p>Dietary Management for Adolescents with Prader–Willi Syndrome</p>

Miller

Tan

2020

AHMT

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Prader-Willi syndrome (PWS) is a complex, multisystem neurodevelopmental disorder affecting approximately 1 in 25,000 live births. PWS is caused by absence of expression of paternally inherited imprinted genes on chromosome 15q11-q13. The syndrome typically occurs due to one of three genetic mechanisms: paternal deletion of involved genes, maternal uniparental disomy, or imprinting center defects. These genetic anomalies lead to well-described clinical phenotype that includes hypotonia, hypothalamic dysfunction, social and behavioral issues, life-threatening hyperphagia, and elevated probability of obesity. Adolescents with PWS are at the highest risk for development of life-threatening obesity due to increased access to food, decreased physical activity, and hyperphagia. Currently, the only treatment for the hyperphagia is environmental control, including locked kitchens and continuous supervision of the affected individual. Caloric intake must be restricted to prevent obesity, which subsequently increases the hunger drive even more. Research and clinical practice have demonstrated that increasing physical activity along with insuring a wellbalanced, nutritionally dense diet can improve overall weight control in adolescents with PWS.

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The social and organisational factors shaping acceptability of a self-management education and exercise intervention for people with hip or knee osteoarthritis in Greenland

Nielsen,

Sørensen

et al. 2024

International Journal of Circumpolar Health

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This study aimed to explore the experiences and perspectives of people with osteoarthritis attending the “Osteoarthritis School” (OA School) in Nuuk, Greenland to generate insights and lessons that can inform the development of self-management education and exercise interventions for people with other lifestyle conditions in a Greenland context. We conducted a qualitative interpretive description (ID) study based on ten semi-structured interviews with people with hip or knee osteoarthritis. Interviews were audio-recorded, transcribed, and coded. Using ID, we identified three themes: 1) perceptions and experiences of how the OA School intervention was organised (time and place); 2) perspectives and experiences of the education and exercise components (social factors, motivation, and education); and 3) significant change stories (physical and mental improvements and increased knowledge of OA). Social and organisational factors, such as working out with peers and the time and place of the intervention, influenced the participants’ acceptance of the OA School intervention. Knowledge from this study will help us gain insight into what to address when developing future self-management education and exercise interventions in the Greenlandic healthcare system.

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Physiotherapists perceived developing positive rapport facilitates participation in exercise among people with Prader-Willi Syndrome: a qualitative study

Cited by 5 publications

References 9 publications

Physical Activity in Patients with Prader-Willi Syndrome—A Systematic Review of Observational and Interventional Studies

Physical Activity in Patients with Prader-Willi Syndrome—A Systematic Review of Observational and Interventional Studies

<p>Dietary Management for Adolescents with Prader–Willi Syndrome</p>

The social and organisational factors shaping acceptability of a self-management education and exercise intervention for people with hip or knee osteoarthritis in Greenland

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