- Email: [email protected]
Assessing communication for children with movement disorders – a practical approach
SYMPOSIUM: NEURODISABILITY
Assessing communication for children with movement disorders e a practical approach
ataxic); aetiology and neuroanatomical basis. There are helpful tools that describe a child’s impact in terms of gross motor function: the Gross Motor Function Classification Scales (GMFCS levels IeV); manual ability and function: the Manual Ability Classification System (MACS levels IeV) and communication: Communication Function Classification System (CFCS levels IeV). Not every child with a movement disorder will have CP. Therefore it is important to be aware of the aetiology, phenotype and classification of a child’s diagnosis before considering how and what you will focus on in assessment. CP can coexist alongside neurodevelopmental conditions such as Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). The prevalence of ASD in the CP population is higher compared to general population. It is important that difficulties are not attributed purely to a child’s movement difficulties and that differential diagnoses are made where appropriate. Neurodevelopmental difficulties may further impact on a child’s participation and function.
Kim Bates Katrina Macleod
Abstract Children with movement disorders, for example Cerebral Palsy, can have speech and language difficulties. In order to identify strengths and weaknesses within their communication profile individual assessment is required. This assessment should inform clinical decision making. The principles of a communication assessment are the same as those used with children who do not have movement disorders; however due to some children’s motor difficulties accessing traditional assessments may be difficult, therefore adaptations and accommodations to the assessment may be required. Assessment at an impairment level can support in identifying areas of difficulties, however assessment of a child’s functional communication is equally as important. Participation is the ultimate goal when we decide on interventions. We can only support this if we are aware of a child’s present abilities, limitations and the impact of these on daily life. Thorough assessment enables us to do this and this article outlines which approaches in practice are most useful in children with both communication difficulties and movement disorder.
The purpose of a language assessment Communication impairments are common in children with CP. At a population level communication difficulties are associated with gross motor function, intellectual impairments, sensory impairments, prematurity and seizures. Studies have shown that the prevalence of communication disability directly correlates to the severity of the motor impairment. In children with GMFCS I eIII 50e75% of children will have receptive and/or expressive difficulties and 100% of children with GMFCS IV and V will have communication difficulties. Although the severity of impairments tends to correlate within the CP population, such correlations cannot be assumed at an individual level, therefore careful individual assessment of a child’s communication is crucial. It is important that communication difficulties are identified as social and educational participation may be reduced and quality of life may also be impacted.
Keywords cerebral palsy; communication; language; language tests; speech
Augmentative Alternative Communication Epidemiology
Children with CP may require additional support for their communication. This can be in the form of Augmentative Alternative Communication (AAC). AAC describes all forms of communication, other than speech. For children who have severe speech and language difficulties, AAC may supplement speech or replace speech if it is unintelligible. AAC may require no additional equipment; this may be termed as ‘unaided communication’ for example gestures, signing, pointing. AAC can make use of equipment; this can be described as ‘aided communication’. The equipment that is used may be low-tech and does not require power. Such systems include paper based systems, such as communication books or boards which use symbols and photos. AAC can also be high tech and requires power to operate. These range from simple single message switches to tablet devices. It is recognised that if the introduction of communication support and AAC is delayed, there may be difficulties in: language development, social interaction, learning, development of life skills. There may be difficulties in controlling one’s environment and also limitations in participation which can impact leisure, education and employment. In order to set meaningful goals and provide appropriate support
Cerebral Palsy (CP) is the most common of all movement disorders in childhood. It affects approximately one in four hundred live births in the UK, and between 1.5 and 4 per 1000 live births in the world. CP is an umbrella term for a group of disorders of the development of movement and posture. It is a consequence of disturbance that occurred in the developing fetal or infant brain; it is often accompanied by disturbances of sensation, cognition, communication, perception and/or behaviour and/or by a seizure disorder. It is non progressive but consequences may change over time. We can describe CP in terms of distribution in the body (hemiplegia vs diplegia); motor subtype (spastic, dystonic, mixed,
Kim Bates BSc MRCSLT, is a Speech & Language Therapist in the Neurodisability Service, Great Ormond Street Hospital, London, UK. Conflict of interest: There are no conflicts of interest. Katrina Macleod BSc MRCSLT, is a Speech & Language Therapist in the Neurodisability Service, Great Ormond Street Hospital, London, UK. Conflict of interest: There are no conflicts of interest.
PAEDIATRICS AND CHILD HEALTH --:-
1
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
and interventions, an assessment to determine a child’s strengths and weaknesses is imperative. Without baselines, it is not possible to ascertain if the support which has been provided has been beneficial.
Language and communication development in children with CP Evidence suggests that although the pattern of language development may be fundamentally similar to that of typically developing children, the patterns of interactions are different. For example, conversations tend to serve a particular purpose, rather than for general discussion. Parent interaction styles are altered and primarily parents are more directive in their communication. For example, they will initiate more, ask more questions and make more requests. Beyond confirming, denying and acknowledging, when a child tries to convey information they are less likely to be understood and clarification is required. Where children have severely reduced speech intelligibility, higher levels of parental directedness have been observed and by comparison, children with more intelligible speech have a wider range of communicative functions, which allows conversation to be more varied. Recent research indicates that children with CP who have communication difficulties have reduced levels of participation (involvement in life situations) and perceived quality of life in the area of interaction with parents.
In order to
Linguistic
Express wants and needs
Operational
Develop social closeness
Social
Exchange information
Strategic
Participate in social etiquette routines
Figure 1 Lights competencies’ model.
model has four domains, each of which has an impact on communication (Figure 1). A detailed case history is required as this can provide a Speech and Language Therapist (SLT) with information about where to start when they begin direct assessment. The information that parents provide is also helpful in understanding where they feel their child’s level of skill is. Helpful questions to ask are included in Box 1 (below). Direct assessment In addition to a child’s level of motor difficulty there are other factors that need to be considered for direct assessment. Although not an exhaustive list, the factors to be considered are summarised in Table 1.
Assessment As with all children who have speech and language difficulties, an assessment will involve a case history, observations, play, social interaction and assessment. It is necessary to start from where the child is now and work up from there. We can use our skills of observation to begin our assessment alongside what we know about their specific diagnosis and the implications of this diagnosis on their abilities and development. Observations should be followed up with assessment (formal and informal) ensuring we challenge our expectations. The most common areas that a language and communication assessment will focus on are: Attention and Listening: how long can the child attend to an adult-directed task and a self-directed task? Is their attention single channelled? Can they demonstrate joint attention? Play: What does the child like to play with? What types of play do they engage in? For example, exploratory, causeeffect, imaginary Receptive Language: What types of words and instructions can the child understand? Expressive Language: How does the child convey information and what communicative functions do they use? Speech: Does the child use vocalisations or any speech? How intelligible is the speech? Social Interaction: Does the child make eye contact? Can they initiate and respond in conversation? Frameworks such as Light’s competencies’ model may be useful to look at to support assessment to identify strengths and in weaknesses in child’s a child’s communication profile. This model is for people who require AAC, however the competencies can be applied to general communicative competence. Lights’
PAEDIATRICS AND CHILD HEALTH --:-
Domain
The child’s opinion As well as obtaining information from parents and professionals working with the child, where possible opportunities for the child to give their opinions is essential. For example: what are their interests? What do they want to communicate about? Who do they want to talk to? What are their preferred communication methods? Using a tool such as Talking Mats will enable a child, through the use of pictures/photos to explore their opinions and feelings about activities, people and places in their lives. Formal assessment When assessing children with the most severe movement disorders (GMFCS IVeV), the traditional standardised assessments that SLTs often use to assess language can be difficult for this group of children to access. These assessments typically require children to point to pictures and/or to manipulate objects. Assessments may require a child to provide a verbal response and
Taking a history: helpful questions C C C C
C C C
What does your child do when they want more of an activity? How do they indicate that they want to finish? How does your child indicate that they would like a toy? Can your child request a particular activity in such a way that you know for sure what activity is requested? Does your child look at people or objects when they are named? Can your child make a choice when options are presented? Can your child give a yes and no response?
Box 1
2
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
that the child can look at a target word to select it (rather than point); or give a yes/no response to a question relating to picture stimuli (rather than point). Table 2 below summarises some of these assessments. The key to using formal assessments is being able to make enough adaptations without changing the parameters of the standardisation.
Factors to consider in making a direct assessment Factor
Considerations
Vision
Can the child detect, see and look at any visual materials? Do they know and recognise what has been presented? Can they deliberately shift and fix their gaze on materials that they are shown? Does the child need to be assessed in their own seating system to allow for optimum positioning to best access the assessment? How is the child going to access the assessment? Has a reliable selection method been identified? For example: reaching/eye pointing/yes-no response Are there additional diagnoses that may impact on assessment performance such as seizures? Does the assessment need to carried out over a number of sessions if it physically and/or cognitively demanding to access? Where is the assessment taking place? Is it a familiar or unfamiliar setting? Is the assessment in one to one or within a busier environment such as a classroom?
Positioning
Access method
Additional diagnosis Fatigue
Environment
Informal assessment Informal assessment is a key part to any clinician’s “tool box”. However, consideration should be given to developing your own clinical protocol so you know what areas you are assessing and why. A specific protocol can then be repeated. Assessment for anyone, but particularly children, should allow creativity, fun and success at whichever level a child is functioning at. A range of informal, language and play based activities can be used to target specific areas of language and communication skills across a range of environments. We need to be able to assess how much language the child can understand and to establish what sort of support enhances a child’s response (signs/level of language/visual support). Our choice of materials should reflect a child’s developmental level as well as being sensitive to the chronological age and specific interests of the child. Play is a key area of informal assessment. Playing with toys/ board games is essential and with appropriate physical support the child is able to manipulate toys/materials to the best of their ability, or direct others to. This type of assessment can easily engage parents/caregivers and other professionals and gives them the opportunity to see value in exploring and then developing play skills.
Table 1
all commonly used standardised language assessments have a visual component. These challenges can make SLTs feel less confident or deskilled in how to carry out an assessment. We find that we can use formal assessments with children with movement disorders. When we refer to formal we typically mean an assessment that is standardised on a population of children without movement disorders; that is repeatable; that allows for assessments of specific areas of language and communication. It is understandable that we question whether we should use formal assessments to inform our knowledge of a child if an assessment has not been standardised on a child with the same movement disorder. However, it can be argued that these assessments provide us with a unique opportunity to measure a discreet set of language skills. We can establish an approximate age equivalent provided we are able to minimise the access issues and maximise their ability to participate in the process. Adaptations do not have to be significant to make use of this format. Specific language comprehension tests for children with severe movement disorders are scarce (see below). Therefore we need to adapt the tools we do have available. Formal assessments are part of the overall assessment. They should not be used as a ‘stand-alone’ and are no substitute for observations, informal play and learning opportunities. But they are part of the process of gaining a clinical picture of a child. In addition, lack of standard assessment practices prevents comparisons across time. Examples of formal assessments that lend themselves to use with a child with movement disorders are ones where access to the items can be through a variety of methods e.g. picture tests
PAEDIATRICS AND CHILD HEALTH --:-
Receptive skills A child’s understanding can be assessed using objects/photos and pictures that a child is familiar with and would have access to at home/school. We typically assess a child’s understanding in terms of how much information they can process at any one time, referred to as information carrying words (ICW’s) or key words. For example, for one key word understanding you might ask a child to find a toy/play item from a selection presented to them. This can be repeated for nouns, verbs and adjectives within a more informal setting and with a range of materials. The complexity of spoken information can be increased in terms of
Examples of formal assessments Area of language
Assessment
Understanding vocabulary (single word level)
Peabody Picture Vocabulary Test (PPVT) Child selects from choice of four pictures British Picture Vocabulary Scale Sub-tests of Pre-school & School aged CELF-UK Sections of Preschool Language Scales
Language assessment: Grammar; sentence length Play and early language
Table 2
3
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
occurring from the earliest stages of communication seen in typically developing individuals. It is a parent or carer reported questionnaire that is completed with a Clinician. The matrix has a strong research basis and also has high inner-rater reliability between parents and professionals and inter-rater reliability between professionals. In addition we can use other checklists and questionnaires that give an insight into the child’s skills but also the parents understanding of their child’s communication. For example: the Receptive-Expressive Emergent Language Test (REEL) the Vineland Adaptive Behaviour Scales and the Communication and Symbolic Behaviour Scales (CSBS).
Objects Most iconic
Colour photos
Miniatures Colour symbols Black and white
Abstract symbols Least iconic
Assessments designed specifically for child with physical impairments
Written words
In addition to adaptations to traditional assessment materials which may be more available to SLTs, computer based assessments which have been specifically designed for children with physical disabilities have also been devised: The Computer Based Accessible Receptive Language Assessment (CARLA) has been designed with the National Health Service (NHS) Institute for Health Research. The Computer Based Instrument for Low Motor Language Testing (C-BILLT) has been developed and this assessment has been standardised for children with severe CP from the ages of 1e6½ years. The C-BILLT is a Dutch assessment and has not yet been translated into English.
Figure 2 The symbolic continuum.
number of key words and grammar/morphology. This gives us an approximate age level for a child. Informal assessment allows us to look at specific support a child benefits from. This is known as scaffolding. For example, a child may find it easier to understand when we supplement spoken language with Makaton sign or pictures/symbols; or when we use an indirect question instead of a direct question. In addition, when considering augmentative support for a child (AAC) we need to know their understanding of symbolic representation. A useful guide is the Symbolic Continuum which ranges from most iconic (objects) to least iconic (written words) (Figure 2).
Assessment of speech Many people with CP have a motor speech disorder, dysarthria. It results from impaired movement of the muscles used for speech production, including the lips, tongue, vocal folds, and/or diaphragm. The type and severity depends on which area of the nervous system is affected. Around 35% of people with CP have dysarthria impacting on speech intelligibility. A further 20% are nonverbal. Dysarthria refers to specific difficulties with: respiration, phonation, resonance and articulation. In the World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF) conceptual framework, dysarthria is an impairment of speech function. Reductions in speech intelligibility arising from dysarthria cause activity limitations in the production of spoken messages in communication. We can classify speech as normal (speech appropriate for age), mild dysarthria (intelligible speech with slight slurred articulation and breathy voice) through to severe dysarthria (unintelligible speech), based on direct observation of the child’s speech and additional assessment. There are specific tools available to assess a child’s speech, for example the Diagnostic Evaluation of Articulation and Phonology and the Children’s Speech Intelligibility Measure. In this article we are not looking at specific interventions and whether they can improve speech intelligibility of children with CP who have dysarthria. However, assessment of a child’s speech skills can give information about the prognosis for intelligible speech and whether augmentative systems should be part of the child’s expressive language. The children with higher GMFCS scores (IV & V) are less likely to use speech as their predominant mode of communication.
Expressive language Using a framework to support our assessment of expressive language is useful for children who use little or no conventional speech. The most common framework used to explore the expressive language of children with limited or no speech is the ‘Means, Reasons and Opportunities’ model. These areas can be defined in the following way: Means: how can a child express themselves? Are the modalities that the child uses understood by their communication partners? Do their modes of communication meet their needs or do other systems need to be considered? For example: speech, nonverbal modes and paralinguistic features. Reasons: what does the child want to communicate about? What motivates the child to communicate? For example: gaining attention, sharing information, wants/needs, rejecting. Opportunities: who can the child communicate with? Where can they use their communication system? Can the child access communication systems throughout the day? The model can help families and professionals working with the child to identify what the child can do and how they communicate. It is also a useful model to help professionals identify areas of difficulty and where to target support. Frameworks to obtain parent information about expressive language, such as the Communication Matrix can be useful assessment tools. This allows us to gather information about a communication function and how and what a child communicates about. The matrix covers seven levels of communication
PAEDIATRICS AND CHILD HEALTH --:-
4
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
Speech intelligibility is the strongest indicator to predict interaction patterns. Children with increased speech intelligibility start more exchanges and provide more information. They also use a wider range of communicative functions compared to those who were less intelligible. Interaction is affected by a child’s motor function and intelligibility. Therefore our assessment not only needs to explore the specific dynamic areas of dysarthria but most importantly how these impact on a child’s level of intelligibility and ongoing communication with families, friends and less familiar people. There are many variations in assessment and interventions and research is increasing gradually. Interventions with the most evidence are motor learning therapies that are designed to increase control of respiratory effort and co-ordination of breathing and phonation rather than specific articulation focus. For example, therapy that develops a child’s ability to control breath support, phonation and speech rate is more successful.
FURTHER READING Geytenbeek JJ, Vermeulen RJ, Becher JG, Oostrom KJ. Comprehension of spoken language in non-speaking children with severe cerebral palsy: an explorative study on associations with motor type and disabilities. Dev Med Child Neurol 2015; 57: 294e300. Kaiser AP, Hester PP, McDuffie AS. Supporting communication in young children with development disabilities. Ment Retard Dev Disabil Res Rev 2001; 7: 143e50. Mary Watson R, Pennington L. Assessment and management of the communication difficulties of children with cerebral palsy: a UK survey of SLT practice. Int J Lang Commun Disord 2015; 50: 241e59. Murphy J, Cameron L. Let your Mats do the talking. Speech Lang Ther Pract Spring 2002; 2002: 18e20 [Talking Mats website], www. talkingmats.com. Mirenda P, Locke PA. A comparison of symbol transparency in nonspeaking persons with intellectual disabilities. J Speech Hear Disord 1989; 54: 131e40. Money D, Thurman S. Talkabout communication. Bull Coll Speech Lang Ther 1994; 504: 12e3. Pennington L, McConachie H. Predicting patterns of interaction between children with CP and their mothers. Dev Med Child Neurol 2001; 43: 83e90. Pennington L, Cockerill H. What interventions can improve the speech intelligibility of children with cerebral palsy who have dysarthria. Royal College of Speech and Language Therapists e Bulletin, July 2015 [Ask the Experts]. Rowland C, Fried-Oken M. Communication matrix: a clinical and research assessment tool targeting children with severe communication disorders. J Pediatr Rehabil Med 2010; 3: 319e29. SPARCLE e a study of participation and quality of life of children with CP living in Europe Denmark, France, Germany, Ireland, Italy, Sweden, England and Northern Ireland. February 2017, http:// research.ncl.ac.uk/sparcle. Voorman JM, Dallmejer AJ, Van Eck M, Schuengel C, Becher JG. Social functioning and communication in children with CP: association with disease characteristics and personal and environmental factors. Dev Med Child Neurol 2010; 52: 441e7. World Health Organization. ICF :International classification of functioning, disability and Health/World Health Organization. Geneva: World Health Organization, 2001.
Functional communication Although direct structured assessment is important, it is imperative that we consider how a child communicates within a functional context. For example, how does a child convey information to family, friends and professionals who they work with and in which situations? The WHO ICF framework provides professionals with a common framework, not only for documenting difficulties at an impairment level; structures of the body and body functions, but it also allows professionals to consider the child at a more functional level and examine communication in the domains of activity and participation. This framework also takes into account the child’s personal and environmental factors; factors which are important to consider as they can support participation, but equally can be a barrier.
Conclusion It is recognised that children with CP may have language and communication difficulties and therefore professionals involved with a family need to use their clinical expertise to carry out a robust assessment. Questioning what you see, why that might be and how you can adapt what you do to understand a child is the same as within any clinical role. We are competent practitioners who are skilled at identifying a child’s language and communication strengths and difficulties. By doing so we are then able to support the child and family by providing a meaningful place to start. Assessment is complex but necessary and the resulting profile can then enable us to identify the most appropriate systems to support communication development. Understanding a child’s diagnosis, including other associated impairments that are common in motor disorders further strengthens our assessment. In order to create meaningful goals for intervention, examining a child’s functional communication is just as important as formal, structured assessments which provide a profile of a child’s communication at an impairment level. Combining both aspects of assessment information allows professionals to create meaningful, realistic and achievable goals to support a child’s language and communication. A
PAEDIATRICS AND CHILD HEALTH --:-
Practice points C
C
C
C
5
The are no agreed clinical standards for the speech and language therapy assessments for children with cerebral palsy Assessment should include: play: receptive language; expressive language and speech Detailed assessment (informal and formal) is necessary to establish meaningful goals for intervention Participation and function are the ultimate goals of intervention following assessment.
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
Assessing communication for children with movement disorders e a practical approach
ataxic); aetiology and neuroanatomical basis. There are helpful tools that describe a child’s impact in terms of gross motor function: the Gross Motor Function Classification Scales (GMFCS levels IeV); manual ability and function: the Manual Ability Classification System (MACS levels IeV) and communication: Communication Function Classification System (CFCS levels IeV). Not every child with a movement disorder will have CP. Therefore it is important to be aware of the aetiology, phenotype and classification of a child’s diagnosis before considering how and what you will focus on in assessment. CP can coexist alongside neurodevelopmental conditions such as Autism Spectrum Disorder (ASD) and Attention Deficit Hyperactivity Disorder (ADHD). The prevalence of ASD in the CP population is higher compared to general population. It is important that difficulties are not attributed purely to a child’s movement difficulties and that differential diagnoses are made where appropriate. Neurodevelopmental difficulties may further impact on a child’s participation and function.
Kim Bates Katrina Macleod
Abstract Children with movement disorders, for example Cerebral Palsy, can have speech and language difficulties. In order to identify strengths and weaknesses within their communication profile individual assessment is required. This assessment should inform clinical decision making. The principles of a communication assessment are the same as those used with children who do not have movement disorders; however due to some children’s motor difficulties accessing traditional assessments may be difficult, therefore adaptations and accommodations to the assessment may be required. Assessment at an impairment level can support in identifying areas of difficulties, however assessment of a child’s functional communication is equally as important. Participation is the ultimate goal when we decide on interventions. We can only support this if we are aware of a child’s present abilities, limitations and the impact of these on daily life. Thorough assessment enables us to do this and this article outlines which approaches in practice are most useful in children with both communication difficulties and movement disorder.
The purpose of a language assessment Communication impairments are common in children with CP. At a population level communication difficulties are associated with gross motor function, intellectual impairments, sensory impairments, prematurity and seizures. Studies have shown that the prevalence of communication disability directly correlates to the severity of the motor impairment. In children with GMFCS I eIII 50e75% of children will have receptive and/or expressive difficulties and 100% of children with GMFCS IV and V will have communication difficulties. Although the severity of impairments tends to correlate within the CP population, such correlations cannot be assumed at an individual level, therefore careful individual assessment of a child’s communication is crucial. It is important that communication difficulties are identified as social and educational participation may be reduced and quality of life may also be impacted.
Keywords cerebral palsy; communication; language; language tests; speech
Augmentative Alternative Communication Epidemiology
Children with CP may require additional support for their communication. This can be in the form of Augmentative Alternative Communication (AAC). AAC describes all forms of communication, other than speech. For children who have severe speech and language difficulties, AAC may supplement speech or replace speech if it is unintelligible. AAC may require no additional equipment; this may be termed as ‘unaided communication’ for example gestures, signing, pointing. AAC can make use of equipment; this can be described as ‘aided communication’. The equipment that is used may be low-tech and does not require power. Such systems include paper based systems, such as communication books or boards which use symbols and photos. AAC can also be high tech and requires power to operate. These range from simple single message switches to tablet devices. It is recognised that if the introduction of communication support and AAC is delayed, there may be difficulties in: language development, social interaction, learning, development of life skills. There may be difficulties in controlling one’s environment and also limitations in participation which can impact leisure, education and employment. In order to set meaningful goals and provide appropriate support
Cerebral Palsy (CP) is the most common of all movement disorders in childhood. It affects approximately one in four hundred live births in the UK, and between 1.5 and 4 per 1000 live births in the world. CP is an umbrella term for a group of disorders of the development of movement and posture. It is a consequence of disturbance that occurred in the developing fetal or infant brain; it is often accompanied by disturbances of sensation, cognition, communication, perception and/or behaviour and/or by a seizure disorder. It is non progressive but consequences may change over time. We can describe CP in terms of distribution in the body (hemiplegia vs diplegia); motor subtype (spastic, dystonic, mixed,
Kim Bates BSc MRCSLT, is a Speech & Language Therapist in the Neurodisability Service, Great Ormond Street Hospital, London, UK. Conflict of interest: There are no conflicts of interest. Katrina Macleod BSc MRCSLT, is a Speech & Language Therapist in the Neurodisability Service, Great Ormond Street Hospital, London, UK. Conflict of interest: There are no conflicts of interest.
PAEDIATRICS AND CHILD HEALTH --:-
1
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
and interventions, an assessment to determine a child’s strengths and weaknesses is imperative. Without baselines, it is not possible to ascertain if the support which has been provided has been beneficial.
Language and communication development in children with CP Evidence suggests that although the pattern of language development may be fundamentally similar to that of typically developing children, the patterns of interactions are different. For example, conversations tend to serve a particular purpose, rather than for general discussion. Parent interaction styles are altered and primarily parents are more directive in their communication. For example, they will initiate more, ask more questions and make more requests. Beyond confirming, denying and acknowledging, when a child tries to convey information they are less likely to be understood and clarification is required. Where children have severely reduced speech intelligibility, higher levels of parental directedness have been observed and by comparison, children with more intelligible speech have a wider range of communicative functions, which allows conversation to be more varied. Recent research indicates that children with CP who have communication difficulties have reduced levels of participation (involvement in life situations) and perceived quality of life in the area of interaction with parents.
In order to
Linguistic
Express wants and needs
Operational
Develop social closeness
Social
Exchange information
Strategic
Participate in social etiquette routines
Figure 1 Lights competencies’ model.
model has four domains, each of which has an impact on communication (Figure 1). A detailed case history is required as this can provide a Speech and Language Therapist (SLT) with information about where to start when they begin direct assessment. The information that parents provide is also helpful in understanding where they feel their child’s level of skill is. Helpful questions to ask are included in Box 1 (below). Direct assessment In addition to a child’s level of motor difficulty there are other factors that need to be considered for direct assessment. Although not an exhaustive list, the factors to be considered are summarised in Table 1.
Assessment As with all children who have speech and language difficulties, an assessment will involve a case history, observations, play, social interaction and assessment. It is necessary to start from where the child is now and work up from there. We can use our skills of observation to begin our assessment alongside what we know about their specific diagnosis and the implications of this diagnosis on their abilities and development. Observations should be followed up with assessment (formal and informal) ensuring we challenge our expectations. The most common areas that a language and communication assessment will focus on are: Attention and Listening: how long can the child attend to an adult-directed task and a self-directed task? Is their attention single channelled? Can they demonstrate joint attention? Play: What does the child like to play with? What types of play do they engage in? For example, exploratory, causeeffect, imaginary Receptive Language: What types of words and instructions can the child understand? Expressive Language: How does the child convey information and what communicative functions do they use? Speech: Does the child use vocalisations or any speech? How intelligible is the speech? Social Interaction: Does the child make eye contact? Can they initiate and respond in conversation? Frameworks such as Light’s competencies’ model may be useful to look at to support assessment to identify strengths and in weaknesses in child’s a child’s communication profile. This model is for people who require AAC, however the competencies can be applied to general communicative competence. Lights’
PAEDIATRICS AND CHILD HEALTH --:-
Domain
The child’s opinion As well as obtaining information from parents and professionals working with the child, where possible opportunities for the child to give their opinions is essential. For example: what are their interests? What do they want to communicate about? Who do they want to talk to? What are their preferred communication methods? Using a tool such as Talking Mats will enable a child, through the use of pictures/photos to explore their opinions and feelings about activities, people and places in their lives. Formal assessment When assessing children with the most severe movement disorders (GMFCS IVeV), the traditional standardised assessments that SLTs often use to assess language can be difficult for this group of children to access. These assessments typically require children to point to pictures and/or to manipulate objects. Assessments may require a child to provide a verbal response and
Taking a history: helpful questions C C C C
C C C
What does your child do when they want more of an activity? How do they indicate that they want to finish? How does your child indicate that they would like a toy? Can your child request a particular activity in such a way that you know for sure what activity is requested? Does your child look at people or objects when they are named? Can your child make a choice when options are presented? Can your child give a yes and no response?
Box 1
2
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
that the child can look at a target word to select it (rather than point); or give a yes/no response to a question relating to picture stimuli (rather than point). Table 2 below summarises some of these assessments. The key to using formal assessments is being able to make enough adaptations without changing the parameters of the standardisation.
Factors to consider in making a direct assessment Factor
Considerations
Vision
Can the child detect, see and look at any visual materials? Do they know and recognise what has been presented? Can they deliberately shift and fix their gaze on materials that they are shown? Does the child need to be assessed in their own seating system to allow for optimum positioning to best access the assessment? How is the child going to access the assessment? Has a reliable selection method been identified? For example: reaching/eye pointing/yes-no response Are there additional diagnoses that may impact on assessment performance such as seizures? Does the assessment need to carried out over a number of sessions if it physically and/or cognitively demanding to access? Where is the assessment taking place? Is it a familiar or unfamiliar setting? Is the assessment in one to one or within a busier environment such as a classroom?
Positioning
Access method
Additional diagnosis Fatigue
Environment
Informal assessment Informal assessment is a key part to any clinician’s “tool box”. However, consideration should be given to developing your own clinical protocol so you know what areas you are assessing and why. A specific protocol can then be repeated. Assessment for anyone, but particularly children, should allow creativity, fun and success at whichever level a child is functioning at. A range of informal, language and play based activities can be used to target specific areas of language and communication skills across a range of environments. We need to be able to assess how much language the child can understand and to establish what sort of support enhances a child’s response (signs/level of language/visual support). Our choice of materials should reflect a child’s developmental level as well as being sensitive to the chronological age and specific interests of the child. Play is a key area of informal assessment. Playing with toys/ board games is essential and with appropriate physical support the child is able to manipulate toys/materials to the best of their ability, or direct others to. This type of assessment can easily engage parents/caregivers and other professionals and gives them the opportunity to see value in exploring and then developing play skills.
Table 1
all commonly used standardised language assessments have a visual component. These challenges can make SLTs feel less confident or deskilled in how to carry out an assessment. We find that we can use formal assessments with children with movement disorders. When we refer to formal we typically mean an assessment that is standardised on a population of children without movement disorders; that is repeatable; that allows for assessments of specific areas of language and communication. It is understandable that we question whether we should use formal assessments to inform our knowledge of a child if an assessment has not been standardised on a child with the same movement disorder. However, it can be argued that these assessments provide us with a unique opportunity to measure a discreet set of language skills. We can establish an approximate age equivalent provided we are able to minimise the access issues and maximise their ability to participate in the process. Adaptations do not have to be significant to make use of this format. Specific language comprehension tests for children with severe movement disorders are scarce (see below). Therefore we need to adapt the tools we do have available. Formal assessments are part of the overall assessment. They should not be used as a ‘stand-alone’ and are no substitute for observations, informal play and learning opportunities. But they are part of the process of gaining a clinical picture of a child. In addition, lack of standard assessment practices prevents comparisons across time. Examples of formal assessments that lend themselves to use with a child with movement disorders are ones where access to the items can be through a variety of methods e.g. picture tests
PAEDIATRICS AND CHILD HEALTH --:-
Receptive skills A child’s understanding can be assessed using objects/photos and pictures that a child is familiar with and would have access to at home/school. We typically assess a child’s understanding in terms of how much information they can process at any one time, referred to as information carrying words (ICW’s) or key words. For example, for one key word understanding you might ask a child to find a toy/play item from a selection presented to them. This can be repeated for nouns, verbs and adjectives within a more informal setting and with a range of materials. The complexity of spoken information can be increased in terms of
Examples of formal assessments Area of language
Assessment
Understanding vocabulary (single word level)
Peabody Picture Vocabulary Test (PPVT) Child selects from choice of four pictures British Picture Vocabulary Scale Sub-tests of Pre-school & School aged CELF-UK Sections of Preschool Language Scales
Language assessment: Grammar; sentence length Play and early language
Table 2
3
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
occurring from the earliest stages of communication seen in typically developing individuals. It is a parent or carer reported questionnaire that is completed with a Clinician. The matrix has a strong research basis and also has high inner-rater reliability between parents and professionals and inter-rater reliability between professionals. In addition we can use other checklists and questionnaires that give an insight into the child’s skills but also the parents understanding of their child’s communication. For example: the Receptive-Expressive Emergent Language Test (REEL) the Vineland Adaptive Behaviour Scales and the Communication and Symbolic Behaviour Scales (CSBS).
Objects Most iconic
Colour photos
Miniatures Colour symbols Black and white
Abstract symbols Least iconic
Assessments designed specifically for child with physical impairments
Written words
In addition to adaptations to traditional assessment materials which may be more available to SLTs, computer based assessments which have been specifically designed for children with physical disabilities have also been devised: The Computer Based Accessible Receptive Language Assessment (CARLA) has been designed with the National Health Service (NHS) Institute for Health Research. The Computer Based Instrument for Low Motor Language Testing (C-BILLT) has been developed and this assessment has been standardised for children with severe CP from the ages of 1e6½ years. The C-BILLT is a Dutch assessment and has not yet been translated into English.
Figure 2 The symbolic continuum.
number of key words and grammar/morphology. This gives us an approximate age level for a child. Informal assessment allows us to look at specific support a child benefits from. This is known as scaffolding. For example, a child may find it easier to understand when we supplement spoken language with Makaton sign or pictures/symbols; or when we use an indirect question instead of a direct question. In addition, when considering augmentative support for a child (AAC) we need to know their understanding of symbolic representation. A useful guide is the Symbolic Continuum which ranges from most iconic (objects) to least iconic (written words) (Figure 2).
Assessment of speech Many people with CP have a motor speech disorder, dysarthria. It results from impaired movement of the muscles used for speech production, including the lips, tongue, vocal folds, and/or diaphragm. The type and severity depends on which area of the nervous system is affected. Around 35% of people with CP have dysarthria impacting on speech intelligibility. A further 20% are nonverbal. Dysarthria refers to specific difficulties with: respiration, phonation, resonance and articulation. In the World Health Organization’s (WHO) International Classification of Functioning, Disability and Health (ICF) conceptual framework, dysarthria is an impairment of speech function. Reductions in speech intelligibility arising from dysarthria cause activity limitations in the production of spoken messages in communication. We can classify speech as normal (speech appropriate for age), mild dysarthria (intelligible speech with slight slurred articulation and breathy voice) through to severe dysarthria (unintelligible speech), based on direct observation of the child’s speech and additional assessment. There are specific tools available to assess a child’s speech, for example the Diagnostic Evaluation of Articulation and Phonology and the Children’s Speech Intelligibility Measure. In this article we are not looking at specific interventions and whether they can improve speech intelligibility of children with CP who have dysarthria. However, assessment of a child’s speech skills can give information about the prognosis for intelligible speech and whether augmentative systems should be part of the child’s expressive language. The children with higher GMFCS scores (IV & V) are less likely to use speech as their predominant mode of communication.
Expressive language Using a framework to support our assessment of expressive language is useful for children who use little or no conventional speech. The most common framework used to explore the expressive language of children with limited or no speech is the ‘Means, Reasons and Opportunities’ model. These areas can be defined in the following way: Means: how can a child express themselves? Are the modalities that the child uses understood by their communication partners? Do their modes of communication meet their needs or do other systems need to be considered? For example: speech, nonverbal modes and paralinguistic features. Reasons: what does the child want to communicate about? What motivates the child to communicate? For example: gaining attention, sharing information, wants/needs, rejecting. Opportunities: who can the child communicate with? Where can they use their communication system? Can the child access communication systems throughout the day? The model can help families and professionals working with the child to identify what the child can do and how they communicate. It is also a useful model to help professionals identify areas of difficulty and where to target support. Frameworks to obtain parent information about expressive language, such as the Communication Matrix can be useful assessment tools. This allows us to gather information about a communication function and how and what a child communicates about. The matrix covers seven levels of communication
PAEDIATRICS AND CHILD HEALTH --:-
4
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006
SYMPOSIUM: NEURODISABILITY
Speech intelligibility is the strongest indicator to predict interaction patterns. Children with increased speech intelligibility start more exchanges and provide more information. They also use a wider range of communicative functions compared to those who were less intelligible. Interaction is affected by a child’s motor function and intelligibility. Therefore our assessment not only needs to explore the specific dynamic areas of dysarthria but most importantly how these impact on a child’s level of intelligibility and ongoing communication with families, friends and less familiar people. There are many variations in assessment and interventions and research is increasing gradually. Interventions with the most evidence are motor learning therapies that are designed to increase control of respiratory effort and co-ordination of breathing and phonation rather than specific articulation focus. For example, therapy that develops a child’s ability to control breath support, phonation and speech rate is more successful.
FURTHER READING Geytenbeek JJ, Vermeulen RJ, Becher JG, Oostrom KJ. Comprehension of spoken language in non-speaking children with severe cerebral palsy: an explorative study on associations with motor type and disabilities. Dev Med Child Neurol 2015; 57: 294e300. Kaiser AP, Hester PP, McDuffie AS. Supporting communication in young children with development disabilities. Ment Retard Dev Disabil Res Rev 2001; 7: 143e50. Mary Watson R, Pennington L. Assessment and management of the communication difficulties of children with cerebral palsy: a UK survey of SLT practice. Int J Lang Commun Disord 2015; 50: 241e59. Murphy J, Cameron L. Let your Mats do the talking. Speech Lang Ther Pract Spring 2002; 2002: 18e20 [Talking Mats website], www. talkingmats.com. Mirenda P, Locke PA. A comparison of symbol transparency in nonspeaking persons with intellectual disabilities. J Speech Hear Disord 1989; 54: 131e40. Money D, Thurman S. Talkabout communication. Bull Coll Speech Lang Ther 1994; 504: 12e3. Pennington L, McConachie H. Predicting patterns of interaction between children with CP and their mothers. Dev Med Child Neurol 2001; 43: 83e90. Pennington L, Cockerill H. What interventions can improve the speech intelligibility of children with cerebral palsy who have dysarthria. Royal College of Speech and Language Therapists e Bulletin, July 2015 [Ask the Experts]. Rowland C, Fried-Oken M. Communication matrix: a clinical and research assessment tool targeting children with severe communication disorders. J Pediatr Rehabil Med 2010; 3: 319e29. SPARCLE e a study of participation and quality of life of children with CP living in Europe Denmark, France, Germany, Ireland, Italy, Sweden, England and Northern Ireland. February 2017, http:// research.ncl.ac.uk/sparcle. Voorman JM, Dallmejer AJ, Van Eck M, Schuengel C, Becher JG. Social functioning and communication in children with CP: association with disease characteristics and personal and environmental factors. Dev Med Child Neurol 2010; 52: 441e7. World Health Organization. ICF :International classification of functioning, disability and Health/World Health Organization. Geneva: World Health Organization, 2001.
Functional communication Although direct structured assessment is important, it is imperative that we consider how a child communicates within a functional context. For example, how does a child convey information to family, friends and professionals who they work with and in which situations? The WHO ICF framework provides professionals with a common framework, not only for documenting difficulties at an impairment level; structures of the body and body functions, but it also allows professionals to consider the child at a more functional level and examine communication in the domains of activity and participation. This framework also takes into account the child’s personal and environmental factors; factors which are important to consider as they can support participation, but equally can be a barrier.
Conclusion It is recognised that children with CP may have language and communication difficulties and therefore professionals involved with a family need to use their clinical expertise to carry out a robust assessment. Questioning what you see, why that might be and how you can adapt what you do to understand a child is the same as within any clinical role. We are competent practitioners who are skilled at identifying a child’s language and communication strengths and difficulties. By doing so we are then able to support the child and family by providing a meaningful place to start. Assessment is complex but necessary and the resulting profile can then enable us to identify the most appropriate systems to support communication development. Understanding a child’s diagnosis, including other associated impairments that are common in motor disorders further strengthens our assessment. In order to create meaningful goals for intervention, examining a child’s functional communication is just as important as formal, structured assessments which provide a profile of a child’s communication at an impairment level. Combining both aspects of assessment information allows professionals to create meaningful, realistic and achievable goals to support a child’s language and communication. A
PAEDIATRICS AND CHILD HEALTH --:-
Practice points C
C
C
C
5
The are no agreed clinical standards for the speech and language therapy assessments for children with cerebral palsy Assessment should include: play: receptive language; expressive language and speech Detailed assessment (informal and formal) is necessary to establish meaningful goals for intervention Participation and function are the ultimate goals of intervention following assessment.
Crown Copyright Ó 2017 Published by Elsevier Ltd. All rights reserved.
Please cite this article in press as: Bates K, Macleod K, Assessing communication for children with movement disorders e a practical approach, Paediatrics and Child Health (2017), http://dx.doi.org/10.1016/j.paed.2017.06.006