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Project properties

Title	Evaluation of seating devices for children and young adults with dystonia
Keywords	children Dystonia Seating devices
Researchers	prof. dr. M.A.J. de Koning-Tijssen prof. dr. C.K. van der Sluis drs. H. Eggink drs. A. Elema dr. T. Hielkema
Nature of the research	A cross-sectional study (questionnaires).
Fields of study	movement sciences neurology rehabilitation

Background / introduction

Dystonia is a rare movement disorder with persistent or intermittent involuntary muscle activity, resulting in abnormal movements and postures. Childhood dystonia is often accompanied by severe motor impairments. Therefore, many children rely on a wheelchair and spend most of the day in a sitting posture. However, fitting an adequate seating for children and young adults with dystonia is difficult, due to changing postures.

Research question / problem definition
What are the experiences of children, young adults, their caregivers and professionals, regarding seating devices for young people with dystonia?

Workplan
To develop a questionnaire for children and young adults, their caregivers and professionals (a concept has been made but should be adjusted), send them out and analyze the results.

References

- Albanese A, Bhatia K, Bressman SB, Delong MR, Fahn S, Fung VS et al. Phenomenology and classification of dystonia: a consensus update. Mov Disord. 2013; 28:863-73.
- Gimeno H, Adlam T. Protocol: Using Single-Case Experimental Design to Evaluate Whole-Body Dynamic Seating on Activity, Participation, and Quality of Life in Dystonic Cerebral Palsy. Healthcare. 2019; 8:11.
- Lumsden DE, Gimeno H, Tustin K, Kaminska M, Lin JP. Interventional studies in childhood dystonia do not address the concerns of children and their carers. Eur J Paediatr Neurol. 2015;19:327-36.

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