Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review
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-...
Saved in:
| Main Authors: | , , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Wiley
2018-01-01
|
| Series: | Occupational Therapy International |
| Online Access: | http://dx.doi.org/10.1155/2018/5716947 |
| Tags: |
Add Tag
No Tags, Be the first to tag this record!
|
| _version_ | 1832552651820105728 |
|---|---|
| author | Marieke Lindenschot Imelda J. M. de Groot Saskia Koene Ton Satink Esther M. J. Steultjens Maria W. G. Nijhuis-van der Sanden |
| author_facet | Marieke Lindenschot Imelda J. M. de Groot Saskia Koene Ton Satink Esther M. J. Steultjens Maria W. G. Nijhuis-van der Sanden |
| author_sort | Marieke Lindenschot |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-7b1ac1e44176426e8b275c1edf6a34b3 |
| institution | Kabale University |
| issn | 0966-7903 1557-0703 |
| language | English |
| publishDate | 2018-01-01 |
| publisher | Wiley |
| record_format | Article |
| series | Occupational Therapy International |
| spelling | doaj-art-7b1ac1e44176426e8b275c1edf6a34b32025-02-03T05:58:10ZengWileyOccupational Therapy International0966-79031557-07032018-01-01201810.1155/2018/57169475716947Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart ReviewMarieke Lindenschot0Imelda J. M. de Groot1Saskia Koene2Ton Satink3Esther M. J. Steultjens4Maria W. G. Nijhuis-van der Sanden5Department IQ Healthcare, Research Institute for Health Sciences, Radboud University Medical Center Nijmegen, Postbus 9101, 6500 HB Nijmegen, NetherlandsDepartment of Rehabilitation, Donders Center for Neuroscience, Radboud University Medical Center Nijmegen, Postbus 9101, 6500 HB Nijmegen, NetherlandsDepartment of Pediatrics, Radboud Center for Mitochondrial Medicine, Radboud University Medical Center Nijmegen, Geert Grooteplein Zuid 10, 6525 GA Nijmegen, NetherlandsDepartment of Occupational Therapy, HAN University of Applied Sciences, Postbus 6960, 6503 GL Nijmegen, NetherlandsDepartment of Occupational Therapy, HAN University of Applied Sciences, Postbus 6960, 6503 GL Nijmegen, NetherlandsDepartment IQ Healthcare, Research Institute for Health Sciences, Radboud University Medical Center Nijmegen, Postbus 9101, 6500 HB Nijmegen, NetherlandsBackground. 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.http://dx.doi.org/10.1155/2018/5716947 |
| spellingShingle | Marieke Lindenschot Imelda J. M. de Groot Saskia Koene Ton Satink Esther M. J. Steultjens Maria W. G. Nijhuis-van der Sanden Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review Occupational Therapy International |
| title | Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review |
| title_full | Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review |
| title_fullStr | Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review |
| title_full_unstemmed | Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review |
| title_short | Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review |
| title_sort | everyday activities for children with mitochondrial disorder a retrospective chart review |
| url | http://dx.doi.org/10.1155/2018/5716947 |
| work_keys_str_mv | AT mariekelindenschot everydayactivitiesforchildrenwithmitochondrialdisorderaretrospectivechartreview AT imeldajmdegroot everydayactivitiesforchildrenwithmitochondrialdisorderaretrospectivechartreview AT saskiakoene everydayactivitiesforchildrenwithmitochondrialdisorderaretrospectivechartreview AT tonsatink everydayactivitiesforchildrenwithmitochondrialdisorderaretrospectivechartreview AT esthermjsteultjens everydayactivitiesforchildrenwithmitochondrialdisorderaretrospectivechartreview AT mariawgnijhuisvandersanden everydayactivitiesforchildrenwithmitochondrialdisorderaretrospectivechartreview |