This study demonstrates the extremely broad range of important domains for individuals with CP. When asked to provide the domains that they would want to see change as a result of intervention(s) for CP, youth, parents and medical professionals all endorsed items across the domains of the ICF as well as outside the ICF. This breadth of concerns is not surprising and should be considered fairly comprehensive, as the characteristics of the children and youth involved with this study were quite disparate in age, functional ability, and co-morbidities. Even with the variety of responses, primary concerns were fairly consistent and included pain, motor function, mobility, and integration in community life.
Minor differences between groups may represent their particular perspectives. For example, medical professionals were more comprehensive in their responses, including greater identification of community integration and pain, likely because they are knowledgeable about many different experiences with CP and have witnessed significant family stressors.
On the other hand, youth did not mention caregiver issues, perhaps because they, like typically developing adolescents, are more inwardly focused. Areas of import unique to youth included strengthening, new skills (especially writing), use of assistive technology, and gait pattern; perhaps youth have recent or even lifelong experience with therapy that has been directed toward strengthening and gait pattern, thus reinforcing these goals. Concerns with writing and assistive technology may represent the desire among youth for greater independence, for conformity with their peers, and for formal communication. Youth respondents did not have significant intellectual disability, as they needed to be able to respond to the question independently. Due to their higher intellectual functioning, these youth probably had fewer concerns regarding mental processes, as parents and professionals more frequently listed mental functions as important.
Communication was a high frequency concern for parents which may be attributable to the large proportion of parents whose children had significant intellectual disability and therefore could not express their needs and wants. Parents in this study, similar to a European cohort (McManus et al. 2006
), voiced concern with environmental factors addressing provision of services. We postulate that this may be a voice of frustration regarding inadequate services to meet their child’s needs rather than a true expectation for better provision of services as an outcome of most CP interventions. No parents reported concerns about effects on school, play, or work life. This may be because parents focus on their children at home, because they did not consider these issues as pertinent to the question asked, because they don’t expect medical interventions to affect school, play, or work, or because they feel there are no useful means to do so.
This study has several limitations. These data represent only the first step of a larger Delphi process to establish consensus on the important domains to address with interventions for CP. Thus, this is just one snapshot of opinions and not a full understanding of the most important issues. The numbers are small in the subgroups, so comparisons between groups should be interpreted with caution. Furthermore, the participants were not randomly selected and may not be representative of those groups as a whole, thus, although we believe the results are fairly comprehensive given the sample size, the relative frequencies of the responses should not be assumed to apply to all populations. Also, this survey very clearly asked about participants’ perspectives regarding interventions for CP. The results, therefore, cannot be applied to overall concerns or needs, although it is quite possible that some of the respondents had this broader view when they completed the survey. Nonetheless, this survey has provided valuable information to drive further study.
All respondents provided many concerns, which clustered in similar areas of comfort, movement and mobility, and community integration. With identification and clarification of the domains of importance, further work can address issues of assessment of change in these domains.
- Cerebral palsy is prevalent in childhood and affects many aspects of life.
- This study found that medical professionals, parents, and youth with CP endorse wide-ranging domains of impact for therapeutic interventions.
- With greater understanding of the important domains for assessment in childhood CP, better means of measuring change may be developed.