4. Friedman diagnostic
DI,
Liu
criteria
GT, for
the
Digre
KB.
Revised
pseudotumor
cerebri
syndrome in adults and children. Neurology 2013; 81: 1159–65. 5. Lim M, Kurian M, Penn A, Calver D, Lin JP. Visual
failure
without
headache
in
idiopathic
intracranial hypertension. Arch Dis Child 2005; 90:
7. McGeeney BE, Friedman DI. Pseudotumor cerebri pathophysiology. Headache 2014; 54: 445–58.
206–10. 6. Krishnakumar D, Pickard J, Czosnyka Z, Allen L,
8. Batra R, Sinclair A. Idiopathic intracranial hypertension;
Parker A. Idiopathic intracranial hypertension in child-
research progress and emerging themes. J Neurol 2014;
hood: pitfalls in diagnosis. Dev Med Child Neurol 2014;
261: 451–60.
56: 749–55.
Measuring environmental qualities: an innovative approach KEIKO SHIKAKO-THOMAS CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada. doi: 10.1111/dmcn.12440 This commentary is on the original article by King et al. on pages 763– 769 of this issue.
Several studies have explored the International Classification of Functioning, Disability and Health domains of body functions, activities, and participation to guide assessment and practice; however, only a few studies have addressed environmental factors as they relate to children and young people with disabilities. Measuring features of the environment may be critical, to promote participation and to allow children and young people to be integrated into different contexts. While some characteristics of the environment are objective and amenable to change (e.g. architectonical barriers and provision of adapted transportation), other characteristics are highly subjective (e.g. opportunities for growth in a given context). The literature shows that some of these subjective characteristics may be crucial for participation, such as support offered,1 and may also be critical to the perception of quality of life of children (especially young people with disabilities), such as the ability to make choices.2 The instrument described by King et al. offers an innovative approach to understanding environmental factors by providing a structured framework to observe real contexts in relation to the activity.3 Other measures of environment that have been developed in recent years4,5 assess general barriers and facilitators in the environment in relation to a child/young person, but do not identify specific, context-related features of the environment in relation to performing an activity. The Measure of Environmental Qualities of Activity Settings (MEQAS) addressed this gap by identifying characteristics of the environment, not in relation to an individual’s characteristics such as severity or type of disability. It is also a measure developed specifically for leisure settings and targeting young people. A combination of three aspects may collectively be the ideal formula for a deeper understanding of environmental factors related to participation: (1) child-related chal708 Developmental Medicine & Child Neurology 2014, 56: 705–711
lenges within a context, (2) context-related features that can support young people’s engagement, and (3) childcontext barriers and facilitators. King et al. appear to have addressed the first two aspects through the MEQAS and the companion measure that is forthcoming. The complexity of the concepts being measured and the efforts to make subjective concepts (e.g. opportunityrelated qualities) into objectively observed items are challenging; however, this best represents the multifaceted nature of environmental features. The pilot testing and adaptation includes graphical descriptions of foreground/ background, which may help clinicians maintain objectivity; nevertheless, many of the concepts presented, including the bottom-line definition of rating the environment with ‘young people in general in mind’, may be challenging to portray objectively. Understanding the opportunities and other features of an environmental setting independently of a child/young person may be interesting for research (in identifying supportive versus deleterious environments for participation), and program planning (in determining needs and allocating suitable resources) and may be a crucial step in considering environmental attributes related to participation interventions. It is important to consider though that in clinical practice, clinicians would most likely observe any setting with a child’s limitations in mind, and that would affect application of this instrument. The authors presented psychometric testing and validation, and future studies using this measure will further clarify the objective aspects of aesthetics and affordability of an environmental setting. These attributes undoubtedly influence participation levels and can provide more enjoyable and enriching experiences for young people with disabilities engaging in leisure activities. The MEQAS pilot testing also presented some key messages for research and practice that deserve further investigation, i.e. to include the opportunities offered in different settings and as related to activity type (e.g. group versus individual settings, physical versus passive activities). These characteristics can contribute to our understanding of how the environment can be modified to address obstacles to participation in social, active physical, and other leisure activities, and to inform program planning and policy development to endorse the types of environmental attributes that need to be modified. This measure supports
recognition of the social model of disability as it relates to participation by pursuing in-depth analysis to enable the modification of environmental factors, as opposed to tar-
geting changes at the individual level. It provides an opportunity to find beauty in environments where young people can thrive and participate fully.
REFERENCES 1. Anaby D, Hand C, Bradley L, et al. The effect of the environment on participation of children and youth with disabilities: a scoping review. Disabil Rehabil 2013; 35: 1589–98. 2. Shikako-Thomas K, Lach L, Majnemer A, Nimigon J, Cameron K, Shevell M. Quality of life from the
think I’m a normal kid, I just happen to have a disability”. Qual Life Res 2009; 18: 825–32. 3. King G, Rigby P, Batorowicz B, et al. Development of a
4. Dickinson HO, Colver AF. Measurement of the environment of people with disabilities. Arch Phys Med Rehabi 2010; 91: 1310–1.
direct observation Measure of Environmental Qualities
5. Coster W, Law M, Bedell G, Khetani M, Cousins M,
of Activity Settings (MEQAS). Dev Med Child Neurol
Teplicky R. Development of the participation and envi-
2014; 56: 763–69.
ronment measure for children and youth: conceptual
perspective of adolescents with cerebral palsy: “I just
basis. Disabil Rehabil 2012; 34: 238–46.
Movement quality: is beauty only in the eyes of the beholder? BERT STEENBERGEN 1,2 1 Behavioural Science Institute, Radboud University Nijmegen, Nijmegen, the Netherlands. 2 School of Psychology, Australian Catholic University, Melbourne, Vic., Australia. doi: 10.1111/dmcn.12429 This commentary is on the original article by Wright et al. on pages 770–778 of this issue.
Being part of society is an essential aspect of life. Participation is one of the key features in the International Classification of Functioning, Disability and Health: Children and Youth Version model of the World Health Organization.1 For children with a compromised motor control disorder such as cerebral palsy (CP), participation in different aspects of society is not a trivial matter.2 Often, their compromised motor abilities affect a multitude of movement activities, in turn hindering participation. Essentially, motor control is not only related to what a child ‘can do’, but also to ‘how a child does it’. It is particularly this latter, often neglected, aspect of motor control that is the main focus of the paper of Wright et al.3 They have developed and tested an assessment tool (the Quality Function Measure) aimed at measuring the ‘aesthetics’ of movements in a reliable and valid way, thus focusing on quantifying ‘how a child does it’. Although it may not be that obvious at first hand, this may provide an important step towards facilitation of participation in this group of children. Why should we be concerned with movement quality, or loosely stated, movement aesthetics? If we take a side step to sports science this becomes immediately evident. Although the Olympic motto ‘Citius, Altius, Fortius’ refers to measurable quantities (seconds, centimeters, kilograms), some sports are rated by their aesthetic quality, such as gymnastics. Clearly, winning (or, participating in the Olympics) is not only about functional skills and
excelling in these, but it is also about how aesthetically well these skills are performed. While knowing the winner in sports that have clear measurable units (e.g. seconds, centimeters, kilograms) is straightforward, it becomes more complex when the aesthetic aspects need to be rated. Obviously, there exists no objective quantification of aesthetic quality, and therefore it is left to professional eye of the judges. Identifying the quality, or aesthetics, of movements into an objective measurement system is exactly the purpose of the paper by Wright et al. With this, they encounter a real challenge of quantifying something that may not completely allow quantification. Still, the need for such quantification is also obvious from a participation point of view. Proficiency in motor skill is an important factor for participation and this not only involves the functional aspect of the skill, but also, and maybe even more so, how these skills are performed as participation is closely related to the (ap) perception of significant others. Once again, this can be illustrated through participation in sports. Studies on participation in sports activities in children with developmental coordination disorder (DCD) and CP have revealed barriers to participation.4,5 One notable barrier in children with DCD was the lack of smooth coordination and concomitant lack of confidence. This aspect hindered participation in sports activities. From these examples it is clear that, in the long run, participation for children with CP (and DCD) might be helped by not only improving their motor function, as is common rehabilitation practice, but also by targeting their movement quality. The development of an appropriate assessment tool and subsequent testing of its reliability and validity is a necessary and valuable first step in this process. Eventually, beauty may then not only be in the eyes of the beholder. Commentaries
709
DI,
Liu
criteria
GT, for
the
Digre
KB.
Revised
pseudotumor
cerebri
syndrome in adults and children. Neurology 2013; 81: 1159–65. 5. Lim M, Kurian M, Penn A, Calver D, Lin JP. Visual
failure
without
headache
in
idiopathic
intracranial hypertension. Arch Dis Child 2005; 90:
7. McGeeney BE, Friedman DI. Pseudotumor cerebri pathophysiology. Headache 2014; 54: 445–58.
206–10. 6. Krishnakumar D, Pickard J, Czosnyka Z, Allen L,
8. Batra R, Sinclair A. Idiopathic intracranial hypertension;
Parker A. Idiopathic intracranial hypertension in child-
research progress and emerging themes. J Neurol 2014;
hood: pitfalls in diagnosis. Dev Med Child Neurol 2014;
261: 451–60.
56: 749–55.
Measuring environmental qualities: an innovative approach KEIKO SHIKAKO-THOMAS CanChild Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada. doi: 10.1111/dmcn.12440 This commentary is on the original article by King et al. on pages 763– 769 of this issue.
Several studies have explored the International Classification of Functioning, Disability and Health domains of body functions, activities, and participation to guide assessment and practice; however, only a few studies have addressed environmental factors as they relate to children and young people with disabilities. Measuring features of the environment may be critical, to promote participation and to allow children and young people to be integrated into different contexts. While some characteristics of the environment are objective and amenable to change (e.g. architectonical barriers and provision of adapted transportation), other characteristics are highly subjective (e.g. opportunities for growth in a given context). The literature shows that some of these subjective characteristics may be crucial for participation, such as support offered,1 and may also be critical to the perception of quality of life of children (especially young people with disabilities), such as the ability to make choices.2 The instrument described by King et al. offers an innovative approach to understanding environmental factors by providing a structured framework to observe real contexts in relation to the activity.3 Other measures of environment that have been developed in recent years4,5 assess general barriers and facilitators in the environment in relation to a child/young person, but do not identify specific, context-related features of the environment in relation to performing an activity. The Measure of Environmental Qualities of Activity Settings (MEQAS) addressed this gap by identifying characteristics of the environment, not in relation to an individual’s characteristics such as severity or type of disability. It is also a measure developed specifically for leisure settings and targeting young people. A combination of three aspects may collectively be the ideal formula for a deeper understanding of environmental factors related to participation: (1) child-related chal708 Developmental Medicine & Child Neurology 2014, 56: 705–711
lenges within a context, (2) context-related features that can support young people’s engagement, and (3) childcontext barriers and facilitators. King et al. appear to have addressed the first two aspects through the MEQAS and the companion measure that is forthcoming. The complexity of the concepts being measured and the efforts to make subjective concepts (e.g. opportunityrelated qualities) into objectively observed items are challenging; however, this best represents the multifaceted nature of environmental features. The pilot testing and adaptation includes graphical descriptions of foreground/ background, which may help clinicians maintain objectivity; nevertheless, many of the concepts presented, including the bottom-line definition of rating the environment with ‘young people in general in mind’, may be challenging to portray objectively. Understanding the opportunities and other features of an environmental setting independently of a child/young person may be interesting for research (in identifying supportive versus deleterious environments for participation), and program planning (in determining needs and allocating suitable resources) and may be a crucial step in considering environmental attributes related to participation interventions. It is important to consider though that in clinical practice, clinicians would most likely observe any setting with a child’s limitations in mind, and that would affect application of this instrument. The authors presented psychometric testing and validation, and future studies using this measure will further clarify the objective aspects of aesthetics and affordability of an environmental setting. These attributes undoubtedly influence participation levels and can provide more enjoyable and enriching experiences for young people with disabilities engaging in leisure activities. The MEQAS pilot testing also presented some key messages for research and practice that deserve further investigation, i.e. to include the opportunities offered in different settings and as related to activity type (e.g. group versus individual settings, physical versus passive activities). These characteristics can contribute to our understanding of how the environment can be modified to address obstacles to participation in social, active physical, and other leisure activities, and to inform program planning and policy development to endorse the types of environmental attributes that need to be modified. This measure supports
recognition of the social model of disability as it relates to participation by pursuing in-depth analysis to enable the modification of environmental factors, as opposed to tar-
geting changes at the individual level. It provides an opportunity to find beauty in environments where young people can thrive and participate fully.
REFERENCES 1. Anaby D, Hand C, Bradley L, et al. The effect of the environment on participation of children and youth with disabilities: a scoping review. Disabil Rehabil 2013; 35: 1589–98. 2. Shikako-Thomas K, Lach L, Majnemer A, Nimigon J, Cameron K, Shevell M. Quality of life from the
think I’m a normal kid, I just happen to have a disability”. Qual Life Res 2009; 18: 825–32. 3. King G, Rigby P, Batorowicz B, et al. Development of a
4. Dickinson HO, Colver AF. Measurement of the environment of people with disabilities. Arch Phys Med Rehabi 2010; 91: 1310–1.
direct observation Measure of Environmental Qualities
5. Coster W, Law M, Bedell G, Khetani M, Cousins M,
of Activity Settings (MEQAS). Dev Med Child Neurol
Teplicky R. Development of the participation and envi-
2014; 56: 763–69.
ronment measure for children and youth: conceptual
perspective of adolescents with cerebral palsy: “I just
basis. Disabil Rehabil 2012; 34: 238–46.
Movement quality: is beauty only in the eyes of the beholder? BERT STEENBERGEN 1,2 1 Behavioural Science Institute, Radboud University Nijmegen, Nijmegen, the Netherlands. 2 School of Psychology, Australian Catholic University, Melbourne, Vic., Australia. doi: 10.1111/dmcn.12429 This commentary is on the original article by Wright et al. on pages 770–778 of this issue.
Being part of society is an essential aspect of life. Participation is one of the key features in the International Classification of Functioning, Disability and Health: Children and Youth Version model of the World Health Organization.1 For children with a compromised motor control disorder such as cerebral palsy (CP), participation in different aspects of society is not a trivial matter.2 Often, their compromised motor abilities affect a multitude of movement activities, in turn hindering participation. Essentially, motor control is not only related to what a child ‘can do’, but also to ‘how a child does it’. It is particularly this latter, often neglected, aspect of motor control that is the main focus of the paper of Wright et al.3 They have developed and tested an assessment tool (the Quality Function Measure) aimed at measuring the ‘aesthetics’ of movements in a reliable and valid way, thus focusing on quantifying ‘how a child does it’. Although it may not be that obvious at first hand, this may provide an important step towards facilitation of participation in this group of children. Why should we be concerned with movement quality, or loosely stated, movement aesthetics? If we take a side step to sports science this becomes immediately evident. Although the Olympic motto ‘Citius, Altius, Fortius’ refers to measurable quantities (seconds, centimeters, kilograms), some sports are rated by their aesthetic quality, such as gymnastics. Clearly, winning (or, participating in the Olympics) is not only about functional skills and
excelling in these, but it is also about how aesthetically well these skills are performed. While knowing the winner in sports that have clear measurable units (e.g. seconds, centimeters, kilograms) is straightforward, it becomes more complex when the aesthetic aspects need to be rated. Obviously, there exists no objective quantification of aesthetic quality, and therefore it is left to professional eye of the judges. Identifying the quality, or aesthetics, of movements into an objective measurement system is exactly the purpose of the paper by Wright et al. With this, they encounter a real challenge of quantifying something that may not completely allow quantification. Still, the need for such quantification is also obvious from a participation point of view. Proficiency in motor skill is an important factor for participation and this not only involves the functional aspect of the skill, but also, and maybe even more so, how these skills are performed as participation is closely related to the (ap) perception of significant others. Once again, this can be illustrated through participation in sports. Studies on participation in sports activities in children with developmental coordination disorder (DCD) and CP have revealed barriers to participation.4,5 One notable barrier in children with DCD was the lack of smooth coordination and concomitant lack of confidence. This aspect hindered participation in sports activities. From these examples it is clear that, in the long run, participation for children with CP (and DCD) might be helped by not only improving their motor function, as is common rehabilitation practice, but also by targeting their movement quality. The development of an appropriate assessment tool and subsequent testing of its reliability and validity is a necessary and valuable first step in this process. Eventually, beauty may then not only be in the eyes of the beholder. Commentaries
709
