Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review
Publication year
2018Source
Occupational Therapy International, 2018, (2018), article 5716947ISSN
Publication type
Article / Letter to editor
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Organization
Rehabilitation
Paediatrics
IQ Healthcare
Orthopaedics
Journal title
Occupational Therapy International
Volume
vol. 2018
Subject
Radboudumc 18: Healthcare improvement science RIHS: Radboud Institute for Health Sciences; Radboudumc 3: Disorders of movement DCMN: Donders Center for Medical Neuroscience; Radboudumc 6: Metabolic Disorders RIHS: Radboud Institute for Health SciencesAbstract
Background: Engagement in everyday activities is important for the health and wellbeing of children. Children with mitochondrial disorders have impaired energy production leading to limitations in activity. It is unknown which activities these children perform and if the nature of activities of low-functioning children differs from average-functioning children. Therefore, this pilot study explored the activities reported in patient records of a heterogeneous group of children with genetically confirmed mitochondrial disorders. Methods: A retrospective qualitative directed content analysis by health care professionals reported activities (as part of their professional reasoning obligations) in hospital patient records of children with mitochondrial disorder. Results: Seventeen patient records, presenting notes on capacities and performed activities, showed an overview of everyday activities that covered the categories: self-care, house chores, therapy, school, computing, hobby, play, sports, and mobility/transport. The activity categories of low-functioning children did not differ from average-functioning children, although descriptions of specific activities differed between groups. Conclusion: This pilot exploration indicates that the types of activities that children with mitochondrial disorders perform are not necessarily linked to the child's impairments. However, differences in levels of independence, assistive device usage, and energy costs seem to exist. Future research should address the child's perspective on, and meaning of, activity performances.
This item appears in the following Collection(s)
- Academic publications [238441]
- Electronic publications [122519]
- Faculty of Medical Sciences [90373]
- Open Access publications [97514]
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