Neuropediatrics 2014; 45(05): 275-277
DOI: 10.1055/s-0034-1372695
Editorial Comment
Georg Thieme Verlag KG Stuttgart · New York

Context as Catalyst[*]

Heike Philippi
1   Centre of Developmental Neurology, Frankfurt am Main, Germany
› Author Affiliations
Further Information

Publication History

Publication Date:
07 April 2014 (online)

German Translation of the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire: Test–Retest Reliability and Correlation with Gross Motor Function in Children with Cerebral Palsy

What do children with cerebral palsy (CP) and their families expect from their pediatric neurologist?

Foremost, we can assume that they want their neurologist to make a proper diagnosis and explain the nature of this chronic disease. Once the family is aware that there is currently no cure for CP but only options for improvement, an open discussion about the appropriate therapeutic goals and treatment generally ensues. During this discussion, it often becomes evident that there are differences in the perspectives of the professionals, the children, and their parents.[1] [2] Times have changed, and parents, for example, no longer follow professionals' recommendations without giving them critical consideration. They expect from their pediatric neurologist, apart from medical advice, counsel and support in questions of everyday life with CP.

But are pediatric neurologists sufficiently trained and properly equipped with the necessary tools to respond professionally to these requirements?

Certainly, we are well trained in making a diagnosis, in classifying CP as spastic, dyskinetic or ataxic according to the SCPE (Surveillance of Cerebral Palsy in Europe) criteria and in clarifying etiology.[3] In the past decade, we have also learned to use the functional classification systems for gross motor function (GMFCS, gross motor function classification system), fine motor function (MACS, manual ability classification system), and communication (CFCS, communicative function classification system).[4] [5] [6] We are familiar with prescriptions for functional therapies such as physiotherapy and occupational therapy. Some of us are experts in the use of botulinum toxin, and we cooperate with orthopedic surgeons and neurosurgeons for necessary operations. We supply them with medical aids such as foot orthotics, walkers, and wheelchairs.

This is all fine and good. But increasingly important is an awareness of the quality of life (QOL) of children with CP, as reflected in the growing number of studies evaluating the everyday needs of these children and their families. In 2007, a study reported on 318 European children aged 8 to 12 years with CP without severe intellectual impairment, who were asked about their QOL with the KIDSCREEN instrument. This was followed in 2008 by a study of 258 Australian children aged 4 to12 years with CP, who reported about their QOL responding to the CP-QOL Child instrument.[7] [8] In 2010, there was a report from the Netherlands about a 3-year follow-up of health-related QOL (HRQOL) in 91 children with CP aged 8 to 13 years, while in 2013 a 4-year follow-up report on social participation of 424 children with CP with a mean age of 10 years was published.[9] [10]

The essentials of all these studies are as follows: Most children with CP have the potential for a similar QOL as other children if social participation is guaranteed. From the children's perspective, functional and especially motor function deficits do not determine their well-being and happiness. In contrast, the parents' attitude toward QOL is more negative and is often related to the level of functional impairment. This discrepancy can be largely explained by parents' stress and exhaustion. Not surprisingly, severe functional impairment (GMFCS-Level V) and severe intellectual impairment are associated with low QOL. Moderate intellectual impairment is a risk factor for emotional problems, impaired autonomy, and participation. Meanwhile, in their reports and from their perspective, the children themselves consistently identify several factors that contribute to a lower QOL. Pain is the most important clinical symptom that impairs their well-being, internalizing psychiatric problems decreases their HRQOL, and speech problems interfere with their interpersonal relationships.

Several consequences for the medical treatment of children with CP can be drawn from the earlier studies. But while functional training is important, it is by far not the whole story. In fact, functional training and medical support are meaningful only if they enable social participation, mobility, and autonomy. The physician can reach this goal by understanding the needs of the children and their parents and by engaging in motivational moderation.

For pediatric neurologists, a standardized and individualized questionnaire would be very helpful to identify the needs of the family. Physicians already have at their disposal questionnaires such as the Child Health Questionnaire and the PedsQL, which measures global QOL for children with chronic diseases.[11] [12] However, while these questionnaires may be adequate for children with CP who have a good degree of functionality (GMFCS-Levels I–II), they do not capture the health-related physical, mental, and social well-being and role attainment of children with CP who have a lesser degree of functionality (GMFCS-Levels III–V). An instrument for these children, the caregivers priorities and child health index (CP-CHILD), was developed in 2006 for English-speaking countries.[13] Since that time, it has proven to be a useful tool: A recent systematic review outlines the good psychometric properties of the CP-CHILD.[14]

In this issue, Jung et al present the first German translation of the CP-CHILD.[15] They have also evaluated the validity and reliability of the CP-CHILD on a German pediatric collective with good results. Moreover, they have created easy and free-of-charge access via the Internet to the German-language CP-CHILD.[16] In doing this, they facilitate and enrich the anamnestic and QOL-oriented workup of pediatric neurologists in German-speaking countries who are in charge of children with CP GMFCS-Levels III–V.

The use of the CP-CHILD may help pediatric neurologists to focus more on the personal and environmental domains of the ICF philosophy (International Classification of Function, Health and Disability, ICF),[17] which is an important step toward enabling children's social participation. Furthermore, it might be helpful to turn the ICF paradigm upside down, with personal and environmental factors on top and health conditions at the bottom, to emphasize the importance of context factors for up-to-date neuropediatric care ([Fig. 1]).

Zoom Image
Fig. 1 International Classification of Function: Paradigm upside down.

The use of an HRQOL questionnaire is one just modern instrument of neuropediatric care. A questionnaire that evaluates parental stress would be likewise important to organize support for parents. The English-language parenting stress index is now also available in German (Belastungsinventar für Eltern).[18] Another valuable tool in working out therapeutic goals for everyday life is the Canadian Occupational Performance Measurement (COPM), a standardized interview for children and parents, which has proven its usefulness and is available in German.[19] [20] The questions and structure of the COPM interview can help parents of children with intellectual impairment, for example, to recognize that behavioral problems constitute the most important limitation on participation. This has been discussed in a recent article.[10]

Indeed, if pediatric neurologists adopt the perspective of personal and environmental factors of the ICF paradigm on children with CP, we have the opportunity to develop a new attitude toward their treatment: We will want to empower children with CP. After all, it is they who are the experts on themselves, whereas we are “just” the helpers with medical, neurological, and social expertise. This perspective enables a novel approach, context therapy, which has shown first encouraging results by empowering children with CP and their families rather than by solely treating functional deficits.[21] Context therapy is mediated by a medical expert, who at the beginning moderates a goal-setting discussion among the child, the parents, and the experts. Afterward, the expert mediates a solution-finding process, with the focus on changing the environment rather than the child, and on initiating self-organization.[22] In addition, by answering the questions of the CP-CHILD, pediatric neurologists and parents alike can be more in touch with the needs of the child—and thus become more willing to embrace the concept of empowerment.

Allow me to illustrate the approach of context therapy with the example of a child's love for his hamster. Using context therapy, the pediatric neurologist identifies the interests of the child and puts this discovery to good use. Daily and often onerous exercise with therapists, necessary to improve muscle strength and reduce contractures, can be replaced with letting the child feed his hamster every day. Now the child has to prepare the food, move/crawl to the cage, open the cage door, and put the food in. Exercises like this are fun for the child and give him the feeling of being responsible, just like the other family members. As well, a hungry hamster ensures that compliance is no longer an issue. And the stress on the parents is at least partially relieved because they have to make fewer trips to physiotherapists and have a happier child on their hands. So when the pediatric neurologist, other therapists and the parents create daily routines such as these, which include sufficient aspects of movement, the first steps will be taken toward the empowerment of the child. And the child's individual context becomes the catalyst in the successful management of CP in children.

* This article is an editorial on “German translation of the Caregiver Priorities and Child Health Index of Life with Disabilities Questionnaire: test–retest reliability and correlation with gross motor function in children with cerebral palsy” by Kana et al (Neuropediatrics 2014;45(5):289–293, doi: 10.1055/s-0034-1372304).


 
  • References

  • 1 Nijhuis BJ, Reinders-Messelink HA, de Blécourt AC , et al. Needs, problems and rehabilitation goals of young children with cerebral palsy as formulated in the rehabilitation activities profile for children. J Rehabil Med 2008; 40 (5) 347-354
  • 2 Shikako-Thomas K, Bogossian A, Lach LM, Shevell M, Majnemer A. Parents' perspectives on the quality of life of adolescents with cerebral palsy: trajectory, choices and hope. Disabil Rehabil 2013; 35 (25) 2113-2122
  • 3 Surveillance of Cerebral Palsy in Europe. Surveillance of cerebral palsy in Europe: a collaboration of cerebral palsy surveys and registers. Surveillance of Cerebral Palsy in Europe (SCPE). Dev Med Child Neurol 2000; 42 (12) 816-824
  • 4 Rosenbaum PL, Palisano RJ, Bartlett DJ, Galuppi BE, Russell DJ. Development of the gross motor function classification system for cerebral palsy. Dev Med Child Neurol 2008; 50 (4) 249-253
  • 5 Öhrvall AM, Krumlinde-Sundholm L, Eliasson AC. The stability of the manual ability classification system over time. Dev Med Child Neurol 2014; 56 (2) 185-189
  • 6 Hidecker MJ, Paneth N, Rosenbaum PL , et al. Developing and validating the communication function classification system for individuals with cerebral palsy. Dev Med Child Neurol 2011; 53 (8) 704-710
  • 7 Dickinson HO, Parkinson KN, Ravens-Sieberer U , et al. Self-reported quality of life of 8-12-year-old children with cerebral palsy: a cross-sectional European study. Lancet 2007; 369 (9580) 2171-2178
  • 8 Shelly A, Davis E, Waters E , et al. The relationship between quality of life and functioning for children with cerebral palsy. Dev Med Child Neurol 2008; 50 (3) 199-203
  • 9 Janssen CG, Voorman JM, Becher JG, Dallmeijer AJ, Schuengel C. Course of health-related quality of life in 9-16-year-old children with cerebral palsy: associations with gross motor abilities and mental health. Disabil Rehabil 2010; 32 (4) 344-351
  • 10 Tan SS, Wiegerink DJ, Vos RC , et al; the PERRIN+ study group. Developmental trajectories of social participation in individuals with cerebral palsy: a multi-centre longitudinal study. Dev Med Child Neurol 2013; doi: 10.1111/dmcn.12343 (e-pub ahead of print)
  • 11 Landgraf JM, Abetz L, Ware JE. The Child Health Questionnaire User's Manual. 1st ed. Boston, MA: The Health Institute, New England Medical Centre; 1996
  • 12 Varni JW, Seid M, Kurtin PS. PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 2001; 39 (8) 800-812
  • 13 Narayanan UG, Fehlings D, Weir S, Knights S, Kiran S, Campbell K. Initial development and validation of the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD). Dev Med Child Neurol 2006; 48 (10) 804-812
  • 14 Carlon S, Shields N, Yong K, Gilmore R, Sakzewski L, Boyd R. A systematic review of the psychometric properties of quality of life measures for school aged children with cerebral palsy. BMC Pediatr 2010; 10: 81
  • 15 Jung N, Brix O, Bernius P , et al. German Translation of the Caregiver Priorities and Child Health Index of Life with Disabilities questionnaire: test-retest reliability and correlation with gross motor function in children with cerebral palsy. Neuropaediatrics 2014; 45 (5) 289-293
  • 16 CPCHILD© Ein Index zur gesundheitsbezogenen Lebensqualität bei Menschen mit Behinderung. Available at: https://www.sickkids.ca/pdfs/Research/CPChild/38197-CPCHILD_German_%20questionaire.pdf The Hospital for Sick Children & Bloorview Kids Rehab, 2004. Accessed: April 1, 2014
  • 17 Hollweger J, Kraus de Carmago O. ICF-CY. Internationale Klassifikation der Funktionsfaehigkeit, Behinderung und Gesundheit bei Kindern und Jugendlichen. 1st ed. Bern, Verlag Hans Huber; 2011
  • 18 Troester H. Eltern-Belastung-Inventar. Deutsche Version des Parenting Stress Index (PSI) von R.R.Abidin. 1st ed. Goettingen, Hogrefe Verlag GmbH & Co KG; 2011
  • 19 Ostensjø S, Oien I, Fallang B. Goal-oriented rehabilitation of preschoolers with cerebral palsy—a multi-case study of combined use of the Canadian Occupational Performance Measure (COPM) and the Goal Attainment Scaling (GAS). Dev Neurorehabil 2008; 11 (4) 252-259
  • 20 Gede H, Kriege S, Strebel H, Sulzmann-Dauer I . Kinder zu Wort kommen lassen. Die adaptierte Version des Canadian Occupational Perfomance Measure für Grundschulkinder COPM a-kids. Handbuch und Marterialien zur praktischen Anwendung Ed. Deutscher Verband der Ergotherapeuten e.V. Reihe 2, Fachbereich Pädiatrie Band 13. Schulz-Kirchner-Verlag, Idsetin. 2011
  • 21 Law MC, Darrah J, Pollock N , et al. Focus on function: a cluster, randomized controlled trial comparing child- versus context-focused intervention for young children with cerebral palsy. Dev Med Child Neurol 2011; 53 (7) 621-629
  • 22 Darrah J, Law MC, Pollock N , et al. Context therapy: a new intervention approach for children with cerebral palsy. Dev Med Child Neurol 2011; 53 (7) 615-620