Improving Participation Outcomes and Interventions in Neurodisability: Co-designing Future Research

There is an urgent, agreed need to improve participation outcomes and interventions for children and young people with neurodisability. We worked together with service users and providers to design research into participation outcomes and interventions in neurodisability. We built on existing evidence about participation outcomes and interventions, and the WHO International Classification of Functioning, Disability and Health. We: (1) specified seven participation outcome categories for measurement; (2) prioritised these for improvement: self-care, friends and social, and physical activity ranked the highest; (3) identified eleven potential intervention categories for targeting the top priority, self-care, through eight hypothesised change mechanisms; and agreed for the interventions to be delivered as a ‘Menu of Interventions’ for personalised self-care support; and (4) designed a before-and-after mixed methods feasibility study to evaluate the Menu with children and young people (0-12 years), and their parents and therapists

Children and Youth with Myleomeningocele's Independence in Managing Clean Intermittent Catheterization in Familiar Settings

Aim: To examine the ability of children and youth with myelomeningocele to independently manage clean intermittent catheterization. Methods: There were 50 participants with myelomeningocele (5–18 years); 13 of them had also participated in a previous hospital-based study. Their abilities and interest in completing the toilet activity were examined at home or in school using an interview and the Canadian Occupational Performance Measure (COPM). Actual performance was observed and rated. Background variables were collected from medical records and KatAD+E tests.Results: In total, 48% were observed to perform the toilet activity independently, in comparison with 74% who self-reported independence. Univariate analyses found KatAD+E could predict who was independent. COPM failed to do so. Ability to remain focused and ambulation were predictors of independence, but age, sex and IQ were not. Multivariable analysis found time to completion to be the strongest predictor of independence. Four children were independent in their familiar environment, but not in the hospital setting, and six of 13 children maintained focus only in their familiar environment. Conclusions: Interviews were not sufficiently accurate to assess independence in the toilet activity. Instead, observations including time to completion are recommended. The execution of the toilet activity is influenced by the environmental context

Predictors of time to complete toileting for children with spina bifida

Background/aim: Previous research has shown that children with spina bifida use clean intermittent catheterisation for urination, a rather complex procedure that increases the time taken to completion. However, no studies have analysed the factors impacting on the time taken to complete the urination that could inform occupational therapy practice. Therefore, the aim was to identify the variables that predict extended time children with spina bifida take to complete urination. Methods: Fifty children, aged 5–18 years old with spina bifida using clean intermittent catheterisation, were observed while toileting and responding to a set of assessments tools, among them the Canadian Occupational Performance Measure. A logistic regression was used to identify which variables were independently associated with an extended toileting time. Results: Children with spina bifida do take long time to urinate. More than half of this study's participants required more than five minutes completing urination, but not all required extended times. Ambulant, independent girls were more likely to perform toileting in less than six minutes compared with other children with spina bifida. However, age, IQ, maintained focus on the task, Canadian Occupational Performance Measure, time processing abilities and self-reported ratings of independence appeared to be of no relevance, to predict extended toileting times. Conclusion: To minimise occupational disruption caused by extended toileting times, occupational therapists should utilise the relevant predictors: gender, independence and ambulation when they prioritise children for relevant interventions