Projectdetails

of


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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