Advances in Speech–Language Pathology, June 2005; 7(2): 65 – 76
Meaning and purpose: A conceptual model for speech pathology terminology
REGINA WALSH Education Queensland, Woolloongabba, Queensland, Australia
Abstract Within speech pathology, one term is sometimes used to cover a range of different constructs, or sometimes several terms refer to one construct. This leads to the high level of inconsistency which characterizes our professional terminology. The speech pathology profession is impeded on several fronts due to this inconsistent terminology. There is an urgent need to develop more appropriate and more consistent terminology to allow the profession to advance in both professional and public forums. This article aims to initiate a debate about how to improve the current situation by exploring the impact of inconsistency on the profession and its clients, and highlighting some of the factors contributing to inconsistency. These factors are the reason the profession has not developed universal and straightforward terminology. Work on improving consistency in speech pathology terminology must first focus on understanding, resolving or minimizing the impact of these underlying factors. This article then proposes the development of a conceptual model based on the purposes of terminology. Such a conceptual model could be developed if the profession investigated the various purposes of terminology, and developed a framework which included definitions and parameters of these purposes, and only then looked at examples of appropriate terms to meet these purposes. A proposal for a conceptual model is presented as a provocation to the profession.
Keywords: Terminology, consistency, speech pathology, language, conceptual model, framework, communication.
Introduction While working as a speech pathologist in a large government agency over the last 20 years, I have been frustrated by the problems inherent in speech pathology terminology, the misunderstandings that result from these problems, and the subsequent waste of energy and effort. This article is based on the desire to see an end to such waste. Clearer and more consistent terminology would allow the profession to advance in both professional and public forums. A first step toward greater consistency is to debate some questions fundamental to the profession. This debate should be broad ranging and inclusive. This article aims to initiate this debate by exploring the impact of inconsistency on the profession and its clients, and highlighting some of the factors contributing to speech pathology’s inconsistent terminology. These factors are the reason the profession has not developed a universal and straightforward list of consistent terminology. Work on improving consistency in speech pathology terminology will make little progress until we address these underlying factors.
This article differs from previous writing about this issue in the proposal for how the profession should tackle the problem. Instead of a focus on the meaning of individual terms, this article proposes the development of a conceptual model for terminology based on the purposes of the terminology. A conceptual model for terminology would provide a framework for debate about the profession’s terminology and would cater for the wide diversity within our profession. While a conceptual model should be developed by debate and collaboration across the profession, an example model is presented to demonstrate the idea. This article contains examples related to the area of communication, although it is assumed similar issues and possible solutions would apply to the area of swallowing. Impacts on the profession Most speech pathologists have had experiences of how inconsistent terminology impacts negatively, both on clients and on professionals. Leonard (1998) said speech pathologists’ clients are invisible, overlooked because of the excessive number of terms that
Correspondence: Regina Walsh, Disability Services Support Unit, Education Queensland, 141 Merton Road, Woolloongabba Qld 4102, Australia. Tel/Fax: + 61 7 3269 2799. E-mail:
[email protected] ISSN 1441-7049 print/ISSN 1742-9528 online ª The Speech Pathology Association of Australia Limited Published by Taylor & Francis Group Ltd DOI: 10.1080/14417040500125285
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have been employed. Clients are not represented clearly in broad government service planning, data collection at the population level, or in political decision making (Australian Institute of Health and Welfare (AIHW), 2003b). Prevalence data are not strong (Blum-Harasty & Rosenthal, 1992; Wake & Reilly, 2001) so the arguments about unmet needs are also not strong. In my opinion, the public profile of the profession languishes due to the lack of appropriate and consistent terminology. Professional communication is also affected. The inconsistency which plagues our profession was recently highlighted in a report by the AIHW (2003b, p. 55) which noted: Classification and terminology used to describe speech impairments are particularly fraught with inconsistency, in particular the use of different interpretations for the same terminology or different terminologies for the same meaning.
Lack of a common framework and consistent terminology means that there is limited informational value and generalizability of findings in the clinical and research literature on communication disabilities (Simeonsson, 2003). Factors contributing to inconsistency Several complex underlying factors contribute to the profession’s inconsistency. These include: 1. 2. 3. 4. 5. 6.
Speech pathologists’ factors Complexity of human communication Model of disability Varying paradigms of speech pathology practice The tendency toward descriptive ‘diagnostic’ terminology Multiple purposes of terminology.
Speech pathologists’ factors An important characteristic to acknowledge is that some level of inconsistency seems to be a feature of being human. Inconsistency to a degree that impedes communication, however, is not helpful to the profession. In a review of case notes, Cowie, Wanger, Cartwright, Bailey, Millar, Price and Henry (2001) found that terminology was used inconsistently not only between speech pathologists, but also between different cases kept by the same speech pathologist. They recommended the use of a common standardized vocabulary as a logical progression towards the goal of sharing information. Simmons-Mackie (2004) reported little consistency in how respondents assessed or reported outcomes, but saw potential in the International classification of functioning, disability and health (ICF) (World Health Organization
(WHO), 2001) for organizing the current terminology into a consistent framework. Another relevant characteristic of speech pathologists is the tendency towards exhaustive accuracy using scientifically-based ideas and words. The profession is replete with lengthy terms with complex concepts underpinning them (e.g., see Hedge & Davis, 1999). This does not allow easy communication with the public, however. Kamhi (2004) says that people generally use ideas that are simple and make intuitive sense, rather than those that require scientific knowledge and expertise to understand. Words and ideas that persist are those that are most easily passed on, not necessarily those that are useful or true. Kamhi (2004, p. 111) points out that ‘‘unfortunately science, truth and logic have little impact on our professional identity . . . and how the nonprofessional community views our scope of practice and expertise’’. Due to their preference for complex and exhaustively accurate terms, speech pathologists have been unable to agree on consistent and simple terms for public communication. This indicates that there is a need for terminology that allows public ease of understanding, as well as a parallel need for accurate clinical terminology which allows precision in professional communication. A fundamental dichotomy for speech pathology terminology is between public terminology and profession-specific terminology. Complexity of human communication A second factor that makes consistent terminology difficult to achieve is the complexity of the area of human communication development and disorder. Compounding this is the complex relationship between communication and the areas of cognition, learning and social skills. Classifications systems tend to oversimplify the complex reality that is human communication (Worrall, McCooey, Davidson, Larkins & Hickson, 2002). Speech pathology makes distinctions between normal variations in development, delay, disorders, damage and the changes associated with ageing. There are further complex distinctions, often poorly made, about the nature of the relationship of oral communication with written communication (McArthur, Hogben, Edwards, Heath, & Mengler, 2000). This complexity is compounded because of the lack of clear and consistent terminology for professional debate. Before considering the arguments about these distinctions and relationships, however, the profession would be well served by looking at how it defines the core concepts related to human communication. There are common uses of the terms speech, language and communication, generally meaning talking. Then there are technical meanings of these terms used by the different disciplines that study human communication (e.g., neurology, developmental
A conceptual model for terminology psychology, linguistics, speech pathology, audiology, teaching English as a second language). Each discipline explores different aspects of human communication, and each uses these same words with their own specific but different meanings (Kamhi, 2004). These various definitions can be a barrier to communication, and are often highlighted as a concern regarding speech pathology terminology (O’Keeffe & McDowell, 2004; Webb, 2004). I think, however, that it may be inappropriate to lay the blame for our terminology problems with the way other people define our core terms. Kamhi (2004) said the profession lacks simple and intuitive terms to communicate to other people, and that speech pathology’s meaning of language is not well understood and difficult to communicate. But does the profession have a clear operational definition for language and other key terms? It has been argued that the espoused definitions of language (e.g., ASHA, 1993) do not infiltrate the profession’s theories and approaches to intervention (Snow, 1996; Apel 1999). Therefore an operational or ‘‘applied’’ definition has to be extrapolated from use in the profession’s literature, which reveals that a large number of concepts are bundled up together in the term language. Speech pathologists use this one word to mean the social tool and the symbolic system and the mental function of making meaning and the specific neurological processes of the brain and the linguistic subsystems and the actual form or content and the output or product – sometimes all at the one time, or sometimes opting for one of the meanings. This use of a single term to discuss ‘‘decidedly different phenomena’’ creates endless problems (Apel, 1999, p. 105). Apel (1999) argues that the lack of attention to definitions leads to a breakdown in communication and the exchange of ideas in the scientific community. The concept of language, like much of the profession’s terminology, is not fully explored and this results in inconsistency and confusion (AIHW, 2003b). If the profession were to define its key words better, or to develop a number of words for the various meanings currently bundled into one term, debates about delay versus disorder, for example, may be less problematic. If there were clearer definitions for the profession’s core terminology, it may be easier to discuss the relationships between human communication and other areas of human functioning. Before the profession can make progress in becoming more consistent, it needs to revisit and rejuvenate its core terminology to more accurately reflect the complex phenomenon of human communication. Many writers have commented on this need (Aram, 1991; Snow, 1996; Kamhi, 1998; Apel, 1999; Kamhi, 2004), but without a concerted effort, there may well be years of wandering and wondering ahead.
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Model of disability A third factor contributing to inconsistent terminology is the lack of a satisfactory model of communication disability. In analyzing models of communication disability, Simeonsson (2003, p. S5) pointed out that earlier work (citing Rapin, 1996; Hall, 1997; Bishop & Rosenbloom, 1987) ‘‘reflect a mixture of diagnostic, etiological and clinical elements’’. Oates (2004) said that the etiological and diagnostic confusions make it extremely difficult to conduct prevalence and natural history studies. This confusion indicates the lack of a model of disability that compares concepts of equivalent nature (e.g., etiological terms compared only with other etiological terms), and related in a coherent and consistent way to concepts of a different nature (e.g., showing a causal relationship to functional terms such as those indicating the impact on communication). Simeonsson (2003) argues that the profession needs a shared model of communication disability in order to promote professional debate. One example of the profession’s lack of an agreed model of disability is the use of term impairment. Impairment is defined within the ICF as denoting problems in body function or structure (WHO, 2002). The term language impairment therefore denotes damage or disorder to parts of the body (neurological system) responsible for language. In speech pathology literature, however, language impairment is often used to describe poor results on language assessment (for one of many examples see Shriberg, Tomblin & McSweeny, 1999). In this situation, it is the language output itself which is being described as impaired, presumably based on a different definition of impairment to that of the ICF. The WHO definition of impairment implies a specific type of etiology, so it is inappropriate to describe a poor score on a language test alone as language impairment. The undefined use of the terminology for the various aspects of disability – the biological, the behavioural, the experiential, the interpersonal, and the social – adds to the inconsistency in speech pathology terminology. Existing models of disability, including the biopsychosocial model underlying the ICF (WHO, 2001), should be investigated. Different paradigms of speech pathology practice A fourth factor contributing to inconsistency is the number of different paradigms of practice within the speech pathology profession. The medical paradigm dominates, but there are well developed educational and social models. Terminology reflects the differences between the paradigms in the following ways: 1.
Terminology can take different perspectives: that of the client; that of the service provider; that of the biological mechanisms involved.
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3.
4.
R. Walsh Terminology can have different scope: some terms explain the condition, as most often found in medical terminology; some terms describe the behaviours observed, as most often in the social model; some terms indicate the general area of support needed, as often seen in the educational model. Terminology can have different implied prognosis or long term status: a biological model of language may imply that the problems may be immutable; a behavioural model may imply that a person needs support to overcome a language problem. Terminology can have varying stigma: there is greater stigma attached to learning or behavioural labels while there is less attached to medical labels (Rice, Hadley & Alexander, 1993; Kamhi, 2004). The terms dyslexia, attention deficit disorder and dyspraxia are considered less stigmatizing than learning disabilities, behaviour disorder and severe phonological disorder (Kamhi, 1998).
Miscommunications frequently occur across these different paradigms (O’Keeffe & McDowell, 2004) due to these varying features of terminology. For example, speech pathologists and teachers may take different implications from a term because of their different paradigms (Webb, 2004). It is not possible to take terminology developed in one paradigm and simply apply it in another. An understanding of these differences would assist the profession to communicate better across the varying paradigms and with the public. The tendency toward descriptive ‘‘diagnostic’’ terminology The fifth factor contributing to speech pathology’s inconsistent terminology comes courtesy of the sociology of the discipline of psychiatry. This is the tendency to describe a number of behavioural symptoms and give this grouping a label as a disorder. The behaviours or symptoms overlap with other so called disorders. The ‘‘disorder’’ label implies an etiology or cause where none is actually established. Terminology from psychiatry is well respected, despite the fact that many terms are not well defined, and have no clear cut off points, and imply an etiology which is not clearly established (Mirowsky & Ross, 1989). The issue has resurfaced in the preparatory literature for the Diagnostic and statistical manual of mental disorders – 5th edition (DSM-V) which details a research agenda to assist psychiatry in moving from the current definitions to a stronger basis in biology (First, 2002). This tendency toward descriptive labels has gradually pervaded social, educational and disability services. Over a decade ago, Aram (1991) warned
that the profession may lose its key role in communication as a result of its move away from explaining the nature of communication disorders toward simply describing them. A tendency exists in the language sciences to describe a few language behaviours and label this group as a disorder (Gagnon, Mottron & Joanette, 1997). This results in a plethora of terms for ‘conditions’ with overlapping symptoms or features. Once a formal term comes into existence, it denotes a clinical entity with an implied etiology. Gagnon et al. (1997, p. 37) pointed out that ‘‘It is a much more difficult task to abandon an outdated or ill-founded clinical entity than it is to introduce a new one’’. They cautioned against this tendency with the reminder that explicit and distinctive diagnostic criteria are required to identify a clinical entity – only then can an entity (a disorder) be empirically demonstrated (Gagnon et al., 1997). Problems arise when a term which is a descriptive label is interpreted as an explanatory or diagnostic label. This is a feature of much of the debate about whether certain conditions can validly be said to exist. For examples, see the writing about auditory processing disorder (Cacace & McFarland, 1998; Nittrouer, 2002), nonverbal learning disability (Volden 2004), developmental apraxia (Forrest, 2003), semantic pragmatic disorder (Gagnon et al, 1997) and specific language impairment (Eadie, Parsons & Douglas, 1997; Friel-Patti, 1999; Pearce, McCormack & James, 2003). The profession expends considerable energy and resources debating the clinical validity of ‘‘disorders’’ based on this descriptive terminology. A pointer to the descriptive nature of a term is the use of circular reasoning to ‘‘explain’’ the condition. This type of argument follows the pattern: Why does this person do x behaviour? . . . because they have y condition. How do you know they have y condition? . . . because they do x behaviour. This type of circular reasoning fails to advance professional debate or understanding (Kamhi, 1998). While it is reasonable to have a period of flux and debate when a clinical entity is in the process of being identified, this should resolve within a reasonable period (Gagnon et al, 1997). If this does not occur, it may point to a problem with the clinical entity itself and may indicate that the label refers to something other than a discrete clinical entity. This is not an argument that all speech pathology terminology should have a biological basis. This is, instead, an appeal to the profession to be clearer about the distinction between terms that are descriptive (describing a group of symptoms e.g., auditory processing disorder) and those that are explanatory (explaining the cause/mechanism e.g., phonological working memory disorder). Conti-Ramdsen and Hesketh (2003) point out the speech pathology profession’s tendency to mix up symptoms and identifying markers on one hand with the underlying causes on the other. A symptom does not equal a
A conceptual model for terminology diagnosis, and a label does not necessarily denote a clinical entity – the profession needs to be much clearer about the difference in order to have fruitful debate about the nature of communication and its disorders. Multiple purposes of terminology The sixth factor that contributes to inconsistency is the multiple purposes for terminology. Purpose relates to the ‘‘scope’’ of the terminology, as explained in the Australian Senate Inquiry into the education of students with disabilities which stated: Depending on the scope of the terminology, rights are protected; funds are allocated; research is commissioned, and policy is evaluated. The definition [of a word] becomes particularly important when it provides a mechanism to compete for funds (EWRE References Committee, 2002, p. 15).
Speech pathology has an extensive clinical terminology which serves a number of profession-specific
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purposes. However, this clinical terminology is inadequate and inappropriate for the many other vital purposes of terminology in the public arena. The profession needs consistent terminology for advocacy for clients, to fight for a share of government resources, to argue for increased staffing, and to justify appropriate levels of compensation and insurance. There are no consistently-used, short, functional terms for these purposes that, importantly, keep the focus on clients, not on speech pathologists as service providers. Terminology for the public arena needs to have educational and political relevance. Summary of factors contributing to inconsistency The six factors which have been highlighted as areas for further professional consideration are summarized in Table I. Each factor alone is complex, and together they contribute to the profession’s inconsistency in terminology. These factors have stymied the profession in attempts to develop universal and straightforward
Table I. Summary of factors contributing to inconsistent terminology. Factor
Details
For future consideration
Speech pathologists’ factors
The profession is replete with complex, Need both profession-specific terminology exhaustively accurate, scientific terminology. and public terminology. Some inconsistency is to be expected. Need to accept some degree of inconsistency, but not that which impedes the profession.
Complexity of human communication
Difference between development, delay, disorder, damage and ageing. Relationship to other areas of human functioning. Unclear definitions of core terminology.
Need to revisit core terminology of ‘‘speech’’, ‘‘language’’ and ‘‘communication’’. Better definitions will allow more fruitful debate and discussion about human communication.
Model of disability
Lack of shared model with definitions of various aspects of disability.
Need to investigate existing models to develop a shared model for communication disability.
Varying paradigms of speech pathology practice
Speech pathology practice has developed differently across medical, educational and social paradigms. Each paradigm has different use and implicatures of its terminology.
Need to investigate the use of terminology across paradigms further to understand the distinctions and to assist professional and public communication.
The tendency toward descriptive ‘‘diagnostic’’ terminology
A group of symptoms may be given a label, but this does not necessarily constitute a clinical entity. There is confusion between descriptive and explanatory terms. There is confusion between the symptoms and the underlying cause. Circular reasoning fails to advance professional understanding.
Need to guard against the creation of terms for ‘‘conditions’’ that lack explicit and distinctive diagnostic criteria. Need to explore and clarify the difference between descriptive and explanatory terminology further. Need to guard against the use of circular reasoning.
Multiple purposes of terminology
There are multiple profession-specific and public purposes of terminology. Clinical terminology is inappropriate for public purposes. Public terminology needs to be accessible, and have educational and political relevance.
Need to explore collaboratively the purposes for which the profession requires terminology. Need to look at existing terminology related to service delivery, data analysis, legislation, and other purposes.
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terminology. Work on improving consistency in speech pathology terminology must look first at understanding, resolving or minimizing the impact of these underlying factors. Can existing terminology systems assist speech pathology? Most speech pathologists will be familiar with the World Health Organization family of international classifications (WHO, 2002). They may be less familiar with the motivation behind this work: the recognition of the role of terminology in the marginalizing of people with disabilities. The underlying problem (WHO, 1980, p. 32) was identified as: . . .concepts relating to disability and disadvantage have been insufficiently explored, and, as a result, no systematized language usage specific to these concerns has developed.
The ICF (WHO, 2001) aims to provide a consistent and comprehensive classification system for terminology related to health, disability and functioning. The relevance of the ICF for speech pathologists has been explored previously (Schindler, Manassero, Dao, Giraudo, Grosso, Tiddia & Schinder, 2002; Eadie, 2003; Threats & Worrall, 2004a, b; Schindler, Muo, Di Rosa, Manassero, Vernero & Schindler, 2004; McLeod & Bleile, 2004). A second area of considerable work on terminology is the development of electronic patient recording (EPR) systems for use in health settings. EPR systems have resulted in greater attention being placed on clinical terminologies and nomenclatures (Chute, Elkin, Sherertz & Tuttle, 1999). One example of an EPR is the Systematized Nomenclature of Medicine – Clinical Terms, known as SNOMED-CT1 (NHSIA, 2002). Terminology related to speech pathology is currently being developed by speech pathologists in the UK (A. Whateley, personal communication, 24 August 2004). The ICF (WHO, 2001) and SNOMED-CT1 (NHSIA, 2002) are examples of the two main types of organizational systems: the first is a classification system and the second is a clinical terminology (NHSIA, 2002). Classification systems are suitable for counting and data sharing, but not so useful for recording care or service that is provided. They include items with definitions and sometimes inclusion criteria (Chute, 2000). Clinical terminologies, on the other hand, are suitable for communicating decisions about treatment plans, assessment, diagnoses and symptoms, but such terminologies are not ideal for counting or aggregating clients, or for statistical purposes. However, clinical terminologies do not usually define the terminology. Thus, classification systems and clinical terminologies serve different purposes. In order to communicate infor-
mation about the client and the service (as needed by clients, their families, and service providers) and to count it accurately (as needed by service managers, funding providers, and for public health initiatives) both are needed (Roberts, Innes, Walker & Scott, 2004). Speech pathologists need to understand this important distinction when discussing possible application of the various terminology systems. It is possible that these existing systems will assist the profession to develop more consistent terminology. It is imperative that the profession engages with, and feeds back into these broad terminology systems (Threats & Worrall, 2004a) as implementation is underway in several countries. However, it is likely that the issues that have plagued the profession will impede integration with these systems. For example, the lack of definitions for the clinical terminology of SNOMED-CT1 fails to address the key problem of varying definitions of terms within speech pathology (A. Whateley, personal communication, 24 August, 2004). When unexplored or unclear terminology is integrated into new organizational systems, it carries the same inherent problems. So while there is potential in these existing systems, revisiting and reinvigorating speech pathology terminology is necessary before the profession can work fruitfully on the broader scale. A model for consistency It is doubtful that a single, functional, universal list of terminology with agreed definitions could be formulated. Both the complexities of human communication and the broad scope of the profession seem to be major hurdles. When pondering terminology in the child language area, Kamhi (1998) expressed the view that it was unrealistic to expect the area would ever achieve consistency. Bishop and Rosenbloom (1987, p. 36) suggested that ‘‘attempts to impose an order on the chaotic variety of language disorders . . . are bound to be imperfect’’. Perhaps there is limited potential in looking at the meaning of the terminology. There may be a way forward if the focus is shifted, instead, to the purposes of our terminology. Kamhi (1998, p. 36) appealed for at least some ‘‘logic to the inconsistency’’. A conceptual model for the purposes of speech pathology terminology could provide this logic. Madden and Hogan (1997) argued that terminology has played a crucial role in achieving improved policy and perceptions in the disability field. They suggest that it is not necessarily possible to arrive at agreed uniform definitions. Instead, they promote the development of a framework or model for terminology. Within such a framework, the purpose and scope of various terms can be clarified. A model provides a number of parameters that define the purpose of a word, but enables adaptations for local needs, such as existing terminology systems. Such a framework would provide some ‘‘common language, common
A conceptual model for terminology reference points and . . . data items which can be related to each other’’ (Madden & Hogan, 1997, p. 28). If the profession were to establish an internationally shared conceptual model for speech pathology terminology it would assist the profession to advance on several fronts. A conceptual model would provide the shared reference point for formulating, debating, sharing and critiquing terminology, and ultimately enable the profession to improve consistency. A model of the purposes of speech pathology terminology should be generated, debated and agreed to by the profession at large, with client involvement. One individual cannot impose a model. However, a proposed model is presented here as a provocation to the profession. This proposal explores terminology at a more fundamental level than a clinical terminology system or a classification system, by categorizing the various purposes that the profession needs to achieve with terminology. The model makes a primary distinction between profession-specific and public purposes for terminology as presented in Table II. The features of profession-specific terminology are based on its purposes for communication within the profession, while the features of public terminology are based on its purposes of advocacy, data collection, broad service planning, etc. Under each of these two main headings of profession-specific terminology and public terminology, there are several types of terminology, serving different purposes. Profession-specific terminology The purposes to be considered within professionspecific terminology include: . . . . . .
Diagnostic purposes Descriptive purposes Research purposes Tentative clinical labels Discredited labels Others.
Each of these purposes requires a definition and a set of parameters to be established by the profession. Individual terms could then be considered against these parameters.
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Diagnostic purposes These are what have been referred to previously as the true clinical entities. These terms attempt to explain the underlying condition. They represent conditions that have explicit and distinctive diagnostic criteria which allow the condition to be empirically validated. Descriptive purposes These are the terms used to describe a group of symptoms that are observed, without necessarily denoting the existence of a clinical entity. They have a role in the development of professional understanding, but they must always be recognized as distinct from diagnostic labels. The distinction between diagnostic and descriptive terms has been explored earlier. Research purposes and tentative clinical labels These are terms created by researchers to label a group of subjects. It is important that such labels are not used as diagnostic labels until research findings are firmly established. An example of a research grouping being used as a diagnostic label is the case of specific language impairment (SLI). Stark and Tallal (1981) proposed criteria in an attempt to operationalize the concept of SLI. These criteria have since been widely applied as diagnostic criteria without the clinical entity of SLI being clearly established, and despite major issues with the interpretation of the criteria (Eadie et al, 1997; Plante, 1998). The profession must guard against the use of terms created for research purposes moving to other purposes without sufficient scientific rigour and process. (It could be argued that SLI is, in fact, more useful as a service delivery term). Discredited clinical labels A model may need a category for terminology which is clearly not useful. However, it may be misuse of a label that is the problem, and it could usefully be assigned to another category. Whether this is a real need would be established over time. These and other potentially useful professionspecific purpose categories will only be arrived at
Table II. The features of profession-specific terminology contrasted with those of public terminology. Profession-specific terminology features
Public terminology features
Scientifically based and cover all aspects of concern
Not excruciatingly accurate and comprehensive, and not necessarily scientifically based Make intuitive sense Must be short Take perspective of the person experiencing it
Complex understanding required May be lengthy Take perspective of underlying/biological mechanism or activity limitations for the person Indicate problem/type of specific therapy area
Indicate general support/service needed
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through extensive debate and collaborative work across the profession. This will allow the development of a model of these purposes (presented in Table III) which would be a useful tool for considering individual terms within the professionspecific terminology. Public terminology Speech pathologists may find it challenging to let go of the characteristics of profession-specific terminology (as explored in Table II) to agree on terms to meet the purposes of public terminology. The profession could consider terminology for a number of public purposes including: . . . .
Service delivery purposes Lobbying and advocacy purposes Political and legislative purposes Others.
Again, each of these purposes requires a definition and a set of parameters to be established by the profession. Individual terms could then be considered against these parameters. It may be decided that several terms are required within a particular purpose (such as the need for many service delivery groups) or that one term could meet several purposes (such as advocacy and political purposes). Service delivery purposes These terms serve to group individuals for services and for data collection at a service level; they increase the understanding about the general area of the person’s needs; and they are a ‘‘handle’’ with which to compete for funds within a service sector. This concept of terminology for service delivery purposes was highlighted by Stanovich (1994, p. 16) who pointed out that learning disability/difficulty (LD) was ‘‘coined largely as a school service delivery category’’. LD has been very effective in terms of service delivery and in terms of advocacy, as it assists the grouping of individuals in order to provide appropriate educational resources. This is in contrast to the use of LD as a clinical term, which remains confusing and problematic (McArthur et al., 2000). The confusion of a service delivery label as a clinical label is commonly experienced in educa-
tional settings. Dahle (2003, p. 238) highlights the issue of those children who receive a clinical diagnosis of autistic spectrum disorder (ASD) from their doctor, whose parents are then surprised to find that ‘‘school personnel have to conduct additional specific tests before they can determine if their child is eligible to receive special education and related services’’. Dahle (2003) describes this as the confusion between two diagnostic systems. It could also be viewed as the result of the same term being used for two different purposes. The first is a diagnostic purpose, while the second is a service delivery purpose to group children with ASD for specialized educational services and funding. Most organizations, particularly large government agencies, operate with categorical systems for resource allocation, which require the creation of service delivery categories (Kauffman, McGee & Brigham, 2004). Terms for service delivery categories become a problem when they are misunderstood as clinical or diagnostic terminology. An example comes from speech pathologists in Education Queensland who have created service delivery terms to assist in communication with others within the department. The broadest term is special needs in communication (SNIC) which encompasses all children with problems in communication – regardless of questions of delay, disorder, short or long term nature, etiology etc., – for whom speech pathologists could potentially provide a service (Department of Education, 2003). SNIC is not a diagnostic label; it is a service delivery term for planning and data collection. This service delivery term has also been useful in public relations and departmental discussions about service management. A second service delivery label, speech-language impairment, has proved more problematic, with confusion caused by its use as both a service delivery and a diagnostic term. Speech-language impairment serves to group those students with significant and long term speech and/or language problems which impact on the child’s learning, in order to provide appropriate educational support from specialist teachers (Department of Education, 2003). Examples of service delivery terms that may be useful for the profession could include a term for late talkers, a term for people whose speech is not sufficiently intelligible for communication, a term for people whose communication difficulties affect
Table III. Some proposed purposes of profession-specific terminology and public terminology. Profession-specific terminology purposes
Public terminology purposes
Diagnostic purposes Descriptive purposes Research purposes and tentative clinical labels Discredited labels Other purposes to be considered
Service delivery purposes Lobbying and advocacy purposes Political and legislative purposes Other purposes to be considered
A conceptual model for terminology their employment options, etc. Across the broad range of speech pathology practice, there may be a need for many such terms, as each work setting will impose different service delivery terminology systems. Lobbying and advocacy purposes These are terms that delineate a group of individuals in order to advance their needs and rights; they can be a ‘handle’ to lobby for resources; and they can help to redresses misunderstanding which may exist in society. Speech pathologists’ clients have an enormous need for clear, appropriate and consistent terminology for this purpose. Dermatologist T. J. Ryan (2003, p. 113) writes about the increased ability of patients to lobby to influence management and government since his profession embraced a language that all users can understand, and turned away from the ‘‘incomprehensible language of investigative and clinical dermatology’’. Dermatology adopted a language which focuses more on the consequences for the person rather than the etiology or expression of disease. The key point is that terminology for lobbying and advocacy should take the perspective of the client. In my experience, public relations go flat when based on clinical terms, and advocacy for clients’ needs is dismissed as self promotion of the profession. The reality of lobbying for appropriate resource allocation is ‘that which is not measured . . . is unlikely to be reflected in the allocation of resources or policy priorities (EWRE References Committee, 2002, p. 27). Measurement requires consistent and unambiguous terminology. Terminology has also played an important role in redressing misunderstanding in various social justice movements (Kauffman, McGee & Brigham, 2004). Consistent and appropriate terminology referring to the needs of people who have disabilities can assist understanding, better support and inclusion of people with disabilities within society. It would be ideal if the profession, and its clients, could agree on a small number of terms to identify people with problems in communication and eating/ drinking. Existing terminology systems would influence this decision. The ICF (WHO 2001) concept of communication restriction would be worth considering for this purpose. Political and legislative purposes This would be the broadest concept for all people whom speech pathologists could assist, currently occasionally referred to as people with communication disability (and sometimes inferring the inclusion of people with eating disability). Appropriate, consistent terminology for the clients of speech pathologists at this level enables representation in
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legislation, in national population statistics, and in social planning. Investigation of possible terminology should include that currently used in legislation, which has its own inconsistencies! Some of the relevant legislation in Australia (e.g., Commonwealth Disability Discrimination Act, Australian Government, 1992) refers to the ICF (WHO, 2001) or its predecessor, the ICIDH-2 (WHO, 1997). The ICF also provides the basis for organizing statistical information about people with disabilities at a population level (ABS, 1999; Madden, Choi & Sykes, 2003) and is used in recent government documents such as the recent Australian report ‘‘Communication restrictions – the experience of people with a disability in the community’’ (AIHW, 2003a). Varying legislation and service environments may necessitate a range of terms across the world for this purpose, but if there were common parameters through reference to a conceptual model, it would be possible to make comparisons internationally. However, it would be ideal if the profession could agree on one term for each of the areas of communication and swallowing; with the widespread and consistent use of an appropriate term for this purpose, the profession would be better placed to wield influence with political and legislative decision-makers. The most useful categories for public terminology purposes will be developed by considered debate and collaborative work across the profession. A table made up only of the headings, such as those listed in Table III, cannot indicate the potential relationships and dynamism between the various purposes. This is yet to be explored. While the profession’s initial interest, and greater comfort, might be in the profession-specific terminology, it may be more strategic to concentrate first on the public terminology purposes. Parameters of a conceptual model A fully developed conceptual model for speech pathology terminology could take the shape proposed in Table IV. It would include a statement of purposes, the definition and parameters of each purpose, examples of the terminology that meet this purpose, and ultimately, recommendations for the terminology which could be consistently used across the profession. It would be inappropriate to complete this model at this stage, as it will only have power for the profession if it is developed by the profession, as broadly and inclusively as possible. Conclusions Inconsistent terminology causes extensive problems for speech pathology. This article has presented a possible way out of the profession’s current predicament. The development of a conceptual model for
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R. Walsh Table IV. Proposal for a conceptual model for speech pathology terminology.
Purpose Profession-specific terminology purposes Diagnostic purposes
Definition & parameters
Research purposes and tentative labels
Including: explicit and distinctive criteria Including: grouping of observed symptoms/behaviours Including: concept and criteria being investigated
Discredited labels
May or may not need this category
Descriptive purposes
Examples
Recommended term/s
Would have many terms for different clinical entities Would have many terms Would not be able to recommend as unknown what needs will be identified
Others Public terminology purposes Service delivery purposes
Including: grouping of clients for the provision of services
Lobbying and advocacy purposes Including: describing the experience and implications for the person Political and legislative purposes Including: describing the implications for the person
Special needs in communication Would have many terms for different groupings and across different paradigms Ideally have few terms
Communication restriction
Ideally have one term for each of communication and eating areas. Possibly in common with advocacy purposes
Eating disability Others
terminology would address many issues, and would be a platform for further work on the development of profession-specific clinical terminologies, the development of appropriate public terminology, and the integration within the broader systems of terminology across the world. Considerable effort will be required to move the profession forward. There needs to be wide ranging debate at conferences, in literature and in work settings. The profession needs an international collaboration of professional associations to participate in a project on terminology. Such a project needs to be as inclusive, representative and collaborative as possible, and to include both professionals and clients. It would have extended timelines, with the status quo as the first main hurdle. During the course of such a project issues will arise: issues in ensuring continuity over time, issues related to language and cultural differences, issues in the inherent dangers in premature decisions and simplification in model making (Julia, 2001), and issues about labeling itself. These issues must not distract the profession from the aim of improving consistency in terminology. The main beneficiaries of a project on terminology would be our clients, who with more consistent, accessible, and appropriate terminology would have a greater chance of having their needs identified and met. International interest in consistent terminology is growing and individuals within the profession are hankering for change. The enormity of the effort required for change is not an excuse for inaction. The issue of inconsistent terminology is fundamental: unless and until
we grapple with it, we will continue to struggle in both professional and public communication. The time for action is now.
Acknowledgments Thanks to Lindy McAllister, Gina Privitera, Anthony Walsh and Paul Middleton for feedback on drafts, and to staff at Education Queensland for their support along this thought path.
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