Title of article :
Everyday Activities for Children with Mitochondrial Disorder: A Retrospective Chart Review
Author/Authors :
Nijhuis-van der Sanden, Maria W. G. Department IQ Healthcare - Research Institute for Health Sciences - Radboud University Medical Center Nijmegen - HB Nijmegen, Netherlands , Lindenschot , Marieke Department IQ Healthcare - Research Institute for Health Sciences - Radboud University Medical Center Nijmegen - HB Nijmegen, Netherlands , de Groot , Imelda J. M. Department of Rehabilitation - Donders Center for Neuroscience - Radboud University Medical Center Nijmegen - HB Nijmegen, Netherlands , Koene, Saskia Department of Pediatrics - Radboud Center for Mitochondrial Medicine - Radboud University Medical Center Nijmegen - Geert Grooteplein Zuid - GA Nijmegen, Netherlands , Satink, Ton European Masters of Science in Occupational Therapy - Amsterdam University of Applied Sciences - Amsterdam, Netherlands , Steultjens, Esther M. J. Department of Occupational Therapy - HAN University of Applied Sciences - Postbus - GL Nijmegen, Netherlands
Abstract :
Engagementineverydayactivitiesisimportantforthehealthandwellbeingofchildren.Childrenwithmitochondrial
disordershaveimpairedenergyproductionleadingtolimitationsinactivity.Itisunknownwhichactivitiesthesechildrenperform
andifthenatureofactivitiesoflow-functioningchildrendiffersfromaverage-functioningchildren.Therefore,thispilotstudy
exploredtheactivitiesreportedinpatientrecordsofaheterogeneousgroupofchildrenwithgeneticallyconfirmed
mitochondrialdisorders.Methods.Aretrospectivequalitativedirectedcontentanalysisbyhealthcareprofessionalsreported
activities(aspartoftheirprofessionalreasoningobligations)inhospitalpatientrecordsofchildrenwithmitochondrialdisorder.
Results.Seventeenpatientrecords,presentingnotesoncapacitiesandperformedactivities,showedanoverviewofeveryday
activitiesthatcoveredthecategories:self-care,housechores,therapy,school,computing,hobby,play,sports,andmobility/
transport.Theactivitycategoriesoflow-functioningchildrendidnotdifferfromaverage-functioningchildren,although
descriptionsofspecificactivitiesdifferedbetweengroups.Conclusion.Thispilotexplorationindicatesthatthetypesofactivities
thatchildrenwithmitochondrialdisordersperformarenotnecessarilylinkedtothechild’simpairments.However,differences
inlevelsofindependence,assistivedeviceusage,andenergycostsseemtoexist.Futureresearchshouldaddressthechild’s
perspectiveon,andmeaningof,activityperformances
Keywords :
Everyday Activities , Children , Mitochondrial Disorder , A Retrospective Chart Review
Journal title :
Occupational Therapy International
