Novita Research Report - 2004 to 2007 - Novita Children's Services

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14Project titleContributorsFundingSummaryMethodResultsImplicationsPatterns of engagement in young people with physical disabilities: Factorsassociated with the achievement of meaningful participation in life activitiesDr Alison Lane (University of South Australia) Professor Tim Olds (University of SouthAustralia), Sonya Murchland, A/Professor Jenny Ziviani (University of Queensland)• University of South Australia, Division of Health SciencesPrevious studies have shown there is a relationship between the ways young peoplespend their time and their likelihood of maintaining healthy living patterns into adulthood.Researchers have been able to collect self-recorded data about daily time use from youngpeople without disabilities using the Multimedia Activity Recall for Children and Adolescents(MARCA). This project adapted MARCA so young people with physical disabilities could alsorecord their daily activities.After initial evaluation of the usability and accessibility features of MARCA by NovitaTech,it was extensively reprogrammed to allow access to its graphics interface via the use ofa keyboard or assistive technology device. Twenty Novita clients who met the eligibilitycriteria were invited to participate in the trial and six responded – one declined the invitationto participate, two were unable to be contacted (one due to English language difficulties),one withdrew due to the exacerbation of their condition and two completed the trial of themodified MARCA.The modified MARCA was trialed by volunteers who experienced physical disability. Datacollected during the trial showed that no excessive ergonomic burden was placed on theparticipant, the time taken to complete a single day entry was 43 and 41 minutes respectivelyand participants reported that they found the physical and cognitive demands of MARCA tobe within their capacity. These results indicate that the modified MARCA could be completedby young people with physical disabilities as easily as young people without disabilities. Dueto the success of the initial modifications and the difficulty with recruiting participants to thestudy, no further user testing was conducted as planned in the original study outline.The modified MARCA will now be used in further studies with young people with disabilitiesto help understand how these young people choose and participate in activities.For clients – the modified MARCA can be used to record patterns of engagement in activitiesover a twenty-four hour period.For services – a broader study exploring patterns of engagement in activities with childrenwith physical disabilities can be undertaken to broaden therapists’ understanding of theimpact of disabilities on children’s lives.StatusCompleted
Project summaries15Evaluation of measurements, interventions, programs andclinical practice> Measurements/assessmentsNovita staff contributors highlighted in boldProject titleContributorsFundingSummaryPulse oximetry levels of children with cerebral palsy and dysphagia before, duringand after eating and drinking: A pilot studyEmma Colston, Kylie Opperman, Catherine Olsson, Dr Parimala Raghavendra,Sandra Stewart• Channel 7 Children’s Research FoundationFor many children with physical disabilities, eating and drinking requires significant effort.Respiratory distress during oral feeding has been observed in children with multipledisabilities and dysphagia. Pulse oximeters are small probes held against the finger or toethat measure pulse rate and calculate the amount of oxygen in the blood. It was thought thatchildren who have difficulty with swallowing may have changes in their breathing that couldbe seen through pulse oximetry monitoring.Research has shown that pulse oximetry monitoring is a safe, reliable, repeatable, noninvasiveand relatively inexpensive tool that adds value to the evaluation of dysphagia inadults with neurological difficulties. There is only limited research investigating the use ofpulse oximetry to monitor dysphagia in children with neurological disabilities, so this studyinvestigated its use as a clinical tool for assessment and management of dysphagia inchildren with cerebral palsy and dysphagia and provided exploratory data.MethodNine participants aged between five and 17 years were involved in the study. The participantswere clients of Novita Children’s Services who were:• Level IV or V on the Gross Motor Function Classification System for Cerebral Palsy• dependent on total assistance for eating and drinking• assessed by their Speech Pathologist as having pharyngeal or oesophageal stagedysphagia.Measurements of oxygen saturation levels and pulse rates were taken by the Nellcor 595pulse oximeter before, during and after three mealtimes at home for each participant.Observations were recorded and videotaped, including textures consumed, managementstrategies used, incidents of coughing and time taken for the meal.Providing assistance with eating
Page 1 and 2: Research Report2004-2007Connecting
Page 3 and 4: Welcome to Research at NovitaWelcom
Page 8 and 9: List of project summariesProject ti
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Page 28 and 29: 28MethodA quasi-experimental design
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Page 46 and 47: 46Results The survey was sent to 22
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76MethodThe drive for developing an
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78ImplicationsThe ongoing use and i
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80ImplicationsStatusThis system is
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82Other refereed publicationsNguyen
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84Australian Group on Severe Commun
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86Mobility 2005, Exeter, UK• Outc
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88Grants and awards received*Novita
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902005 Australian and New Zealand A
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Head Office171 Days RoadRegency Par
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