Are Services Meeting the Health Needs of Children with Cerebral Palsy?
Keeping Current © Emily Dyszuk & Doreen Bartlett, 2015
Why did we do this study?
Cerebral palsy (CP), one of the most common physical disabilities in childhood, is often associated with co-occurring health conditions (Rosenbaum et al. 2007), which often have a great impact on children and families (Wong et al. 2011). As a result, children with CP require a wide variety of health services. Although they usually receive physical therapy (PT) and occupational therapy (OT) services, the extent to which they receive services to meet all of their health needs is largely unexplored. The purpose of this report is to describe what we learned about parents’ reporting of the services received for a variety of associated health conditions and to highlight aspects that could benefit from an expanded range of services.
Who participated in this study?
The participants in this study were part of a larger study called the Move & PLAY Study (see following box for a description). This study included four hundred children with CP between 18 months and 5 years (56% male, distributed across all levels of the Gross Motor Function Classification System (GMFCS)) and their parents.
The larger Move & PLAY Study was designed to follow a large number of children with CP for a year to understand factors associated with motor function, self-care, participation and play. We recruited 430 children in selected sites across Canada and the United States and maintained 90% of the sample over the year. Results of the larger study provide useful information to improve the effectiveness and efficiency of rehabilitation services for preschool children with CP. Please see our website for summaries of the many aspects of this larger study
What was done?
We used the parent-reported Health Conditions Questionnaire to determine the number of health conditions and their impact on the daily lives of young children with CP (Wong et al. 2011), as well as whether services were received for each condition experienced
A Services Questionnaire (Palisano et al. Published and Distributed by CanChild Centre for Childhood Disability Research © Doreen Bartlett, 2015 2 2012) was used to determine the types and intensity of specific rehabilitation and medical services received.
What did the parents tell us about their children’s services?
Based on the Health Conditions Questionnaire, more than 80% of children who had one or more of the following health conditions: problems seeing, hearing, learning and understanding, speaking and communicating, or breathing, or who had seizures or repeated infections were reported by their parents to be receiving services to address these health conditions. This finding was consistent regardless of GMFCS level.
92% of children who had problems speaking or communicating and 89% of children with problems involving the mouth were receiving services from a speech therapist. This is consistent with parent reports of children receiving PT and OT services to address aspects of cerebral palsy related to these professions (Palisano et al., 2012).
Only 31% of 144 children with problems controlling emotions and behaviour were reported to be receiving services (with 13% having received services from a behaviour therapist or psychologist), and the impact of these associated conditions was greater for children not receiving services.
Only 34% of 103 children with problems sleeping were reported to be receiving services; again the impact was greater for children not receiving services.
What do the findings mean?
Children with problems seeing, hearing, learning and understanding, speaking and communicating, or breathing, or with seizures or repeated infections appear to be receiving appropriately supportive services.
Some young children with CP have problems sleeping and with controlling emotions and behaviour. These problems have significant impacts on their daily lives. In this study, most of these children were not receiving appropriate services. Other research has also identified that these associated conditions are largely unmet through health services (Jackson et al. 2011; Newman et al. 2006).
Potential problems should be identified at an early age so that significant needs can be met to improve quality of life.
Service providers, such as PTs and OTs, should use the Health Conditions Questionnaire, or other methods, to screen for problems, including controlling emotions and behaviour and sleep, and work collaboratively with parents to identify services in their communities to meet these needs.
Programs like the Triple P – Positive Parenting Program (http://www.triplep.net/glo-en/home/) or sleepclinics can offer parents tips and strategies for behaviour and sleep management.
Meeting the complex health needs of young children with CP requires advocacy from parents, interdisciplinary teamwork among care providers (including families), and provision of an appropriate range of services from health agencies.
Want to know more? Contact:
Doreen Bartlett, PhD, djbartle@uwo.ca
Acknowledgements
We thank the Move & PLAY study team for access to the data for this exploratory project. Funding was received from the Canadian Institutes of Health Research (MOP 81107) and the National Institutes of Disability and Rehabilitation Research (H133G060254).