Home programs are widely used by occupational therapists as a strategy to address health and development needs of children with cerebral palsy. Experts believe they are essential. Despite wide-spread ...clinical use there is no high quality research evidence proving home program effectiveness. Further there is no information that provides a parent perspective on home programs. The aim of this research was to evaluate the effectiveness of occupational therapy home program intervention for school-aged children with cerebral palsy and identify factors perceived to be important in home program practice from a parent perspective. A double blind randomised controlled trial design was used to evaluate effectiveness, where parents and evaluators were blinded to intervention. Children were randomised to three groups, home program intervention for eight weeks (“8WEEKS”), home program intervention for four weeks (“4WEEKS”), and a control group, that did not receive home program intervention (“NoHP”). The primary end-point was change in performance of functional activities and satisfaction with function as measured by the Canadian Occupational Performance Measure (COPM), after eight weeks. Secondary endpoints were change in COPM scores after four weeks, goal achievement at four and eight weeks as measured by Goal Attainment Scale (GAS), quality of arm movement at four and eight weeks measured on the Quality of Upper Extremity Skills Test (QUEST) and participation levels at four and eight weeks measured on the Children’s Assessment of Participation and Enjoyment (CAPE). Parent experience was explored through semistructured interviews of parents who participated in the home program trial. Content analysis of interview data was conducted to the level of “open coding” to identify factors. Results for the primary outcome measure at the primary end point (eight weeks) - Effect of an 8WEEK or 4WEEK home program on COPM scores: comparison between the three groups was conducted using a linear regression model with baseline COPM performance/satisfaction scores, participant age and severity of cerebral palsy as measured by the GMFCS entered into the model as covariates. Overall, there were statistically significant and clinically important differences in performance of activities and satisfaction with function on COPM when comparing either home program group to the NoHP group at eight weeks. There was no difference between 4WEEKS versus 8WEEKS on COPM performance or satisfaction scores at eight weeks. Results on secondary outcome measures: compared to NoHP, receiving a home program for either 4WEEKs or 8WEEKs increased COPM performance scores and GAS measures at four weeks, and increased COPM performance and satisfaction scores, GAS measures, and QUEST scores at eight weeks. There were no differences within or between groups on the CAPE at either four week or eight weeks. There were no statistically significant between-group differences between the 4WEEK and 8WEEK home program groups on any secondary outcome measures. This was most likely the result of a protocol implementation flaw that occurred in the study where 4WEEK group participants continued program activity for the final four weeks when they should have suspended it. Parents perceived their experience of implementing home programs as characterised by five features: guidance for the journey”, practice makes perfect, they were a necessary “way of life”, they maximised progress and something that made it easier to juggle competing demands. Positive home program experiences were characterised by: support, realistic expectations, flexibility, motivation from goals, activities that translated to real-life, reminders to practice, progress updates and role clarity. Parents advised other parents to: accept the disability, never refuse help, be honest, consider home programs essential, develop routines and view programs as a way of improving the child and parents’ life. No negative experiences were reported. Parents advised professionals that they wanted: support, interdisciplinary co-ordination of programs, advice without pressure and prognostic guidance for future planning. This dissertation presents new information about occupational therapy home programs. Until this study, there was little research evidence to inform therapist or parent decision-making regarding the therapeutic value of home programs or the parent perspective on home programs. Findings from this dissertation can inform clinical practice and parent decisions regarding the use of home program interventions for children with cerebral palsy.
Doctor of Philosophy (PhD)
Despite the popularity of home program interventions there is little evidence to demonstrate effectiveness, particularly when an explicit family centred framework is adopted. This single-group ...pre-post design study evaluates the impact of a standardised occupational therapy home program implemented with a group of 20 children (2-7 years, mean age 3.8)with spastic hemiplegic cerebral palsy. The study measured the effect of the program using: goal attainment scaling(GAS);pediatric evaluation of disability inventory (PEDI); and quality of upper extremity test(QUEST). In addition, parent participation intensity was measured through a home program log. The use of a standardised occupational therapy home program for children with cerebral palsy is recommended as an effective method to achieve therapy goals. Further research using more rigorous designs is required to fully explore treatment efficacy.
Master of Science (Hons.)
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