AVALIAÇÃO COGNITIVA, DEFICIÊNCIA E ACOLHIMENTO INSTITUCIONAL: DESAFIOS E POSSIBILIDADES TEÓRICO-METODOLÓGICAS
REGISTRO DOI: 10.5281/zenodo.7551721
Yuri Leandro do Carmo de Souza
Matheus dos Santos da Silveira
Simone Souza da Costa Silva
Abstract
Cognitive evaluation is a complex process that supports proposals for environmental and social rehabilitation and stimulation. There are several studies on cognitive evaluation, applied even in the institutional environment; however, restricted when it comes to people with disabilities. This study aims to present theoretical and methodological aspects of the cognitive evaluation of people with disabilities under institutional care. It is a theoretical study that discusses the use and adequacy of the assessment and its instruments for people with disabilities under institutional care and presents new methodological and theoretical proposals. The concept of ecological tasks is defended as a theoretical tool for analysis and production of instruments that enable ecological access to the cognitive behavior of people with disabilities, especially those under institutional care. It is vital to consider ecological approaches that allow for a more reliable analysis of the functional cognitive performance of the individuals evaluated, seeking to reduce the observer’s bias.
Keywords: Cognitive Evaluation; Cognition; Human Development; Disability; Institutional Care.
Resumo
A avaliação cognitiva é um processo complexo que dá suporte a propostas de reabilitação e estimulação ambiental e social. Existem vários estudos sobre avaliação cognitiva, aplicados até no ambiente institucional; no entanto, restrito quando se trata de pessoas com deficiência. Este estudo tem como objetivo apresentar aspectos teóricos e metodológicos da avaliação cognitiva de pessoas com deficiência sob cuidados institucionais. É um estudo teórico que discute a utilização e adequação da avaliação e seus instrumentos para pessoas com deficiência sob cuidados institucionais e apresenta novas propostas metodológicas e teóricas apresentadas. O conceito de tarefas ecológicas é defendido como uma ferramenta teórica para análise e produção de instrumentos que possibilitem o acesso ecológico ao comportamento cognitivo de pessoas com deficiência, especialmente aquelas sob cuidados institucionais. É imprescindível considerar abordagens ecológicas que permitam uma análise mais confiável do desempenho cognitivo funcional dos indivíduos avaliados, visando reduzir o viés do observador.
Palavras-chave: Avaliação Cognitiva; Conhecimento; Desenvolvimento Humano; Incapacidade; Cuidado institucional.
1. Introduction
The evaluation process in psychology serves to support proposals for rehabilitation environmental and social stimulation. Studies on cognitive evaluation are distinct and broad, and are applied in most diverse contexts, including in the institutional environment; however, restricted when it comes to people with disabilities (Cardoso & Dias, 2019; Mecca, Dias, Seabra, Jana and Macedo, 2016). With this scenario in mind, this essay seeks to present theoretical-methodological aspects of the cognitive evaluation of people with disabilities under institutional care.
The cognitive evaluation process is complex and there are still several misunderstandings in the context of psychology, such as the argument that the use of standardized evaluation instruments is aligned with the individual’s purely diagnostic or pathological conception, or the reduction of the individual to a number, based only on the quantitative result (Cardoso & Dias, 2019). Nevertheless, the use of standardized evaluation instruments and their possible applications are basic sources of information that can serve for academic, clinical, and rehabilitation or diagnostic purposes (Cardoso & Dias, 2019).
The construction and use of evaluation instruments, as well as the product of this process, is a blooming field in psychology. Based on the Cattell-Horn-Carroll (CHC) theory of intelligence, it is understood that the measurement of different cognitive skills (reasoning, abstract thinking, language, memory, attention, creativity, problem-solving, and intelligence) is the challenge of the evaluation. This challenge is even greater when dealing with people with disabilities.
Empirical evidence indicates that the development and use of evaluation tests are mostly aimed at people without disabilities (Cardoso & Dias, 2019; Mecca, et. Al., 2016). Although it is clear that these are people with a particular cognitive behavior, evaluation tests are prepared based on typical development parameters. The reference to typical patterns of development demonstrates the harsh task of submitting people with disabilities to the neuropsychological evaluation process and producing results that reveal their cognitive behavior. This complexity increases when considering the role played by the environment in the development process and, therefore, also needs to be considered in the evaluation.
1.1 Atypical development, Cognition, and Environment: investigations at the locus of institutional care.
When talking about cognition, the tests that evaluate this dimension of human development are historically used to assist in the evaluation of deficits in intellectual functioning. However, the use of the Intelligence Quotient (IQ) score as a single measure of intelligence can hinder the diagnosis. The exclusive use of intelligence tests may limit information on specific abilities of individuals or not adequately translate the relationship between IQ and everyday aspects, which can be demonstrated from the systematic observation (Alves & Laros, 2017) of routine tasks, which can constitute increments to the evaluation process. This broad and systemic perspective of the evaluation may be more appropriate, especially when dealing with people with disabilities.
In addition to the disability factor, the context of institutional care is an additional element when considering the complexity of the evaluation process. This process can be described as the collection and integration of related data that aims to make a psychological estimate (Cohen, Swerdick & Sturman, 2014). To carry out it competently, the evaluation process must consider, in addition to instruments such as interviews, tests, behavioral observation, and other measurement devices, the knowledge of those who use them, as well as the skill and experience of the evaluator (Cohen, Swerdick & Sturman, 2014).
The skills of the evaluator need to be connected, in addition to the instruments applied, to the context characteristics of the person evaluated, the ecological system that he/she is part of and under which he/she is developing, which can enhance or restrict the maturation of his/her cognitive abilities. Other than that, it is a serious mistake to confuse the evaluation process with pure psychological testing, where the procedure is limited to measuring variables related to psychology through instruments or procedures designed to obtain a simple sample of behavior (Cohen, Swerdick & Sturman, 2014).
When addressing institutional care environments, it is observed that professionals who carry out evaluations need to account for two aspects barely explored in the literature, namely: the peculiarities of the cognitive behavior of people with disabilities and the dynamics of institutional care spaces and its repercussions on the development of those hosted. These aspects also need to be considered during the evaluation process of children, adolescents and adults hosted.
The understanding of the cognitive evaluation process for people with disabilities is still limited. When reviewing published studies on neuropsychological assessment of people with brain injury, Tambaquim, Lima and Ciasca (2009) point out that, although a large number of publications deal with the assessment of memory, attention, and executive functions, the quantification of publications related to the neuropsychological evaluation of people with brain injury, their results are still incipient, which impacts the intervention programs planned for this audience.
Freire and Duarte (2012) consider that the neuropsychological assessment should highlight the compensatory and substitutive processes adopted by the individual in his/her development context. These can (and should) be attributes present in the evaluation process, as well as in their respective instruments. Schlindwein-Zanini, Todeschini, Silva and Conte (2013) consider that there are some useful tools for this practice, such as RAVLT, Rey Complex Figures, Wisconsin Card Classification Test (WCST), Wechsler Intelligence Scale for children (WISC), Wechsler Intelligence Scale for adults (WAIS). However, they emphasize the urgent need for Brazilian research on neuropsychological instruments suitable for individuals with physical/sensory limitations. The inadequate indication of tests in the ANP can harm the results and the ensuing clinical conduct (Schlindwein-Zanini, Todeschini, Silva and Conte, 2013). These implications become more troubling when it comes to people with disabilities who live in institutional care settings.
Despite being considered a protective and exceptional measure to protect and guarantee the rights of children and adolescents, the negative effects of institutional care are extensively reviewed by the literature, especially regarding the population without disabilities. The deprivation of environmental, social, emotional stimuli, little social contact, restricted interactions, and unskilled technical staff are among the factors that contribute to this negative impact on the cognitive development of the individuals hosted (Acioli, Barreira, Lima & Assis, 2018; Piske, Yunes, Bersch & Pietro, 2018).
Despite the negative impacts, the institutional environment may also present protective factors, especially about the institutional culture of continuing education for professionals involved in the care and attention of children and adolescents and encouraging family and community coexistence (Cavalcante, Magalhães, Corrêa, Costa & Cruz, 2018; Corrêa & Cavalcante, 2014; Corrêa, Cavalcante & Magalhães, 2014; Lemos, Gechele & Andrade, 2017). However, studies with hosted participants with disabilities are almost non-existent, whether considering risk or protective factors.
Taking this into account, the debate on the process of evaluating people with disabilities who live in hosting spaces is urgent. Evaluation in these spaces has been used in planning interventions, in stimulating people with disabilities, and as an instrument to obtain legal proof. The evaluation procedures can contribute to the individual’s departure from institutional contexts, whether through adoption or family reintegration since this is one of the purposes of the hosting process.
In view of these considerations, the applicability of evaluation processes of mental functioning is necessary, thus requiring extreme consideration of contextual, personal, and temporal specificities. Based on the notion that the environment has a direct influence on development (Bronfenbrenner, 2011), this process needs to be aligned with a perspective that considers the different interactions existing in the multiple natural contexts in which the individual is inserted.
The proposal presented by Urie Bronfenbrenner (2011) considers that human development is a complex and dynamic system marked by the combination of several components, namely: person, process, context, and time. In this sense, in order to understand development, it is necessary to access the individual’s bioecological system, that is, his convictions, activity level, temperament, aspects that constitute the person being evaluated, endowed with characteristics that influence and shape his/her development, functioning as a product and producer of changes over time, namely, strength, resources, and demands.
This person in development is immersed in a context, understood by events that can influence and be influenced by the person in development. This context is arranged in four interconnected structures: Micro, Meso, Exo, and Macrosystem. The microsystem refers to the relationships established by the person in their most immediate context, such as the relationship with caregivers in the institution, the relationship with other people hosted, environments where the individual interacts directly, affecting them, and having his development course affected by them. At the next level, there is the mesosystem, being recognized for connecting the relationships of two or more environments in which the person actively participates, thus being a system formed by microsystems, such as the school and the institution, or even rehabilitation services (Bronfenbrenner, 2011).
A context in which the person is not present, but is influenced by the events that occur within it, is defined as an ecosystem, which is exemplified by the family relationships of caregivers and their relationship in the institution, or even the legal occurrences that regulate the permanence or not in the institution. The last structure is the macrosystem, which is connected to the culture where the individual is inserted, the belief systems in force in its context, the social and political organization. Thereby, it characterizes the most comprehensive structure that influences the development of the individual, such as the institutional culture itself or even the national understanding of the hosting processes (Bronfenbrenner, 2011).
It is within the context that the Process takes place, and affects the entire course of the individual’s development. Characterized by patterns of reciprocal and increasingly complex interactions between an active human organism and people, symbols, objects that make up its environment (Bronfenbrenner, 2011). The process presents itself as the engine of development that drives people over time, suffering influences and influencing the strength, power, and direction of the relationships established between the individual and his/her environment. This progression in human development occurs when articulating these processes with the individual’s characteristics, with the historical time, and with the context where the individual is inserted (Bronfenbrenner, 2011).
The role played by the environment on human development was also considered by Luria (1990), who stated that the cerebral cortex is formed under the direct action of ecological forces, marked by the repercussions of the environmental systems of which the person is a part. The conception of cognitive development related to the socio-historical process of evolution of man’s behavior remains current, especially marked by the emergence of work, which is a great impetus for the specialization of higher brain functions, manual skills, among others (Luria, 1990).
Based on the understanding of Bronfenbrenner and Luria, who highlight the role of the environment under development, the proposition presented here is the use of this premise not only in the analysis of data from testing but also in the production of tasks and even tests, especially for people with disabilities. In so doing, it is expected to access what is understood as cognition more appropriately. Therefore, it is necessary to assume that the person with disabilities under evaluation is a product, but also a producer of their development and their environment, marked by peculiarities in their functioning that demand creative ways of accessing them, such as ecological tasks (Zimmermann, et.al., 2014).
Recent research on neuropsychological evaluation (Cardoso & Dias, 2019) and its use in different contexts point to the growing need to produce appropriate ecological tasks, that is, to carry out an evaluation based on the individual’s reality, considering his/her life context and the use of the resources available. The use of ecological tasks involves quantitative and qualitative measurements, in order to seek to develop more and more proximity to routine tasks of the daily life of the individual evaluated, where his cognitive development can be manifest. The use of this type of tool will make it possible to obtain data that are more consistent with the person’s behavior, that is, information that is valid, that reveals the individual’s cognitive functioning in his/her context (Chaytor & Schmitter-Edgecombe, 2003); (Zimmermann, et.al., 2014).
2. Discussion
2.1 Cognition and new possibilities for evaluation
The term “cognition” is often used by different fields to describe human mental behavior. In psychology, cognition can be understood as a set of mental functions that involve the acquisition, storage, retention, and use of knowledge, including attention, perception, memory, reasoning, learning, and intelligence (Flores-Mendoza, 2010). In other fields, such as occupational therapy, the definition of cognition is not consensual or clearly described, is related to motor manifestation, the individual’s occupational performance (daily activities, work, and productive activities, as well as leisure or fun activities) in the contexts where the individual is inserted.
Despite their differences, both psychology and occupational therapy understand that, by performing such functions, human beings understand and interact with the world, planning, judging, and solving problems. The domain, to a lesser or greater extent, of cognitive functions, as well as their changes and maturation, is largely related to social changes and the environment where the individual is inserted (Bronfenbrenner, 2011; Luria, 1990). Thus, it is understood that a certain cognitive ability is related to the ease of dealing with a type of information, requiring some degree of investment and stimulation for it to become a competence, be it social or educational (Zimmermann, et.al., 2014). It is these investments in human development that draw attention in institutional care environments and that can be used as subsidies for the cognitive evaluation process. The greater or lesser investment in environmental enrichment, in the tasks performed, in the proposed activities can point to a cognitive performance of greater or lesser magnitude.
In order to conceptualize strategies for people with cognitive impairment and who could not cope with their daily routine activities, Allen built the Human Disability Model (ACDM) (Allen & Allen, 1987). Based on the notion that cognition is expressed in actions oriented towards specific purposes, such as problem-solving in routine tasks, Allen suggests that cognition can be inferred from the observation of people’s behavior in the task. The investigation of behavior in the occupational area has its scope within occupational therapy and ACDM emerges in this theoretical scope as a proposal for cognitive evaluation and rehabilitation (Pontes & Helene, 2016).
Several studies (Pontes & Helene, 2016; Su, Tsai, Su, Tang & Tsai, 2011; Mello, 2018) use the theoretical understanding of the model and instruments developed from Allen’s proposal in the field of cognitive rehabilitation. In this perspective, cognition is seen as one of the main components that influence occupational performance, since daily activities, such as work and leisure, require some degree of perception and thinking skills and thus, cognitive execution (Cardoso & Dias, 2019). Thus, thinking about rehabilitation with regard to occupational therapy, the work involves remedying or improving specific cognitive abilities. This proposal then seems to be in line with the ecological possibilities presented for the cognitive evaluation process of people with disabilities.
In Allen’s view, the evaluation process that allows for the classification of individuals into cognitive levels involves not only revealing their deficiencies, but also highlighting their functionality behind the execution, or not, of a certain task. However, it is not enough to describe the execution or the form of the action, and it is necessary to describe the thought used to guide the different functional states, that is, the measurement of the cognition involved in the neuropsychological process. This is the proposal of the six cognitive levels presented by HDM: to describe the qualitative differences between functional states (Allen & Allen, 1987). This description can reveal the capacities that are preserved, or that must be stimulated in the individual, or even make more evident what can or cannot be used for the ecological basis of the neuropsychological evaluation.
Allen’s description of cognitive levels is an upward variation, between 0 and 6, in which 0 is the state of coma and 6 is the state of most functionality, which makes it possible to plan and predict the effects of an individual’s behavior and compare hypothetical results (Allen & Allen, 1987; Melo, 2018). It was observed that the classification in the levels of cognitive disability is related to the individual’s functional-occupational performance in observable activities that can express their cognitive behavior. It is, therefore, at the intersection of cognitive abilities, motor actions, and the context where the individual behaves that “functional cognition” emerges (Melo, 2018).
In practical terms, the alignment between occupational functional evaluation and neuropsychological investigation has been observed. However, the alignment between usual and important definitions of occupational therapy and psychology such as cognition and intelligence is not always evident, which can be a source of misunderstandings on both sides.
Cognition in psychology is often spoken of as the expression of diverse skills verified through specific tasks, such as attention, reasoning, construction, guidance tasks, generally related to numerical performance, as in the case of intelligence, often debated when it is about IQ. Thus, this view is well accepted and frequently used uniformly in psychology. On the other hand, this uniformity is not evident with regard to occupational therapy. Allen and Allen (1987) already mentioned intrinsic difficulties in the area when highlighting the use of the terms cognition and intelligence as synonyms, expressed by manifestations of behavioral performance, often related to the individual’s functionality in the face of occupational tasks.
Taking into account that both areas present voluptuous contributions to cognitive development and that the use of the concept of cognition must show conformity in the face of the evaluation process, the present study suggests that the evaluation of people with disabilities living in hosting spaces is built on the concept of ecological tasks.
2.2 Ecological tasks: new theoretical and methodological possibilities
Throughout the history of neuropsychology, there has been a concern with a real measure of performance produced by cognitive evaluation instruments. More recently, the ecological concept has been highlighted in the evaluation process. Ecological instruments, or tasks, can be characterized by the standardized form of application associated with tasks that simulate daily situations of cognitive demand (Zimmermann, et. al, 2014). These tasks can also be described by the combination of several evaluation possibilities, involving the evaluator’s posture in observing, making strategies, and analyzing data from this procedure (Zimmermann, et. Al., 2014).
Ecological tasks combine principles and methods of standardized and functional evaluations, seeking to develop scoring tools and procedures, but also to simulate everyday situations in which neurocognitive demands are required (Zimmermann, et.al, 2014).
This concern with the collection of information in an ecological manner about cognitive performance in the evaluation process is not recent, and it is possible to observe it in the initial models of brain functioning described by Luria (Zimmermann, et.al, 2014). Despite the evident interest in understanding the cognitive processes underlying the functional complaints and deficiencies, Chaytor and Schmitter-Edgecombe, (2003) emphasize that the construction of evaluation procedures encounters obstacles since there is a lack of consensus regarding the evaluated constructs and its theoretical definitions.
In view of this, it is necessary to consider that the behavior manifested in the evaluation is a sample of the individual; therefore, it may fail or vary over time. In the face of different configurations, the evaluation process must use different strategies that allow the individual evaluated to issue behaviors and thus reduce the chances of the performance presented not reflecting their real potential to complete real-life tasks (Chaytor & Schmitter -Edgecombe, 2003).
Finally, the role of factors that can be considered non-cognitive, i.e., emotional, behavioral, and physical characteristics, which can reduce the equivalence between performance in ecological tasks and the individual’s daily behavior (Chaytor & Schmitter-Edgecombe, 2003). All of these aspects must be aligned with the need to apply ecological tasks in the face of the cognitive evaluation process.
Strategies to reduce the existing gap between the fields that are part of this process, such as occupational therapy and psychology are a sine qua non condition for defending the concept of ecological tasks. Zimmermann et. al. (2014) indicate that the neurocognitive evaluation is composed of different types of processes, techniques, and instruments and that traditionally standardized clinical resources have been the first choice in neuropsychological research and clinical practice.
A good example that illustrates these recommendations for concepts and the reduction of existing gaps is the instrument called Allen Cognitive Level Screen (ACL), a standardized screening tool designed to assess a person’s necessary cognitive functions from instructions to be followed with needles and lines on a leather board. Based on the ACDM (Allen’s Cognitive Disability Model), it has been related to the ability to perform daily activities, as well as social competence and several cognitive disadvantages, such as processing speed, verbal memory, executive functions, and fluid skills (Su, Tsai, Su, Tang & Tsai, 2011; Lee, Gargiullo, Brayman, Kinsey, Jones and Shotwell, 2003).
Considering these thoughts, it is possible to assume that the defense of the combination of evaluation with tools that consider the performance of the individual in an ecological sense. This is not the purpose at this point, neither is to indicate instruments that achieve this objective, but rather to show that possible classifications in levels of functionality, or even to measure the influence of cognitive disabilities on routine tasks, their consequences regarding limitations and potentials for performance, or furthermore, carrying out specific analyses in general life situations is possible methodological for an ecological proposal for cognitive assessment.
This relationship between occupational performance and the individual’s cognitive level allows for a better understanding of functional impairments and the need for assistance. This fusion of occupational performance with the cognitive level is expressed in functional cognition, in routine tasks, such as dressing clothes, preparing food, using transportation, changing the environment to guarantee a safe life, sanitary disposal of body waste, as well as earning and spending money.
It is interesting to note that behaviors related to routine maintenance are observed during the process of completing the steps while proceeding with the task. These behaviors do not occur in isolation, thus leading to the investigation of other possible explanations related to the association of behavior linked to voluntary actions and brain functioning (Allen & Allen, 1987). Thus, this routine task behavior can be influenced by a person’s medical condition, individual differences in the person’s past experiences, and the task itself (Allen & Allen, 1987).
In general, to think about the development and the evaluation process in the context of institutional care is to take into account the characteristics of the individuals hosted, as well as the environment where this process takes place, its general characteristics, and its possible impact on cognitive development. This argument is widely accepted in terms of qualitative Lurian neuropsychological evaluation. This neuropsychological evaluation approach uses understandings of intellectual functioning based on the concept of function for the individual, thus allowing the differentiation of learning and behavior problems, caused by lack of maturation and/or by characteristics of brain structure resulting from mismatch associated with inadequate teaching or compromised characteristics of the child’s personality (Glozman, 2014).
In this sense, the idea that evaluations with fixed and immutable measures need to be used with the utmost caution is defensible, as each person’s potential should be the most valued, considering their development possibilities, given the next stage to be achieved (Glozman, 2014).
Thus, it seems that this approach comes close to the understanding of an evaluation process that considers the function of the activity and its cognition behind the execution, which reveals the zone of proximal development of each individual (Vygotsky, 1984, Luria, 1990). Additionally, the proposal here is to consider, despite people in institutional care situations presenting impairments in their cognitive functions, to capture their cognitive efficiency beyond the reasoning tasks proposed in traditional evaluation instruments.
Brain impairments are resulting from disability, as well as cognitive impairments arising from situations involving institutional care, but some forces can be described as promoters, which affect development even in the face of adverse situations. Such forces need to be considered and can be assessed and compose a more reliable cognitive profile when it comes to people with disabilities.
3. Conclusion
Several studies in the Brazilian and international context are conducted with a focus on children and adolescents in foster care, in many of which the cognitive aspect of their participants is contemplated. However, there is still little research on people with disabilities in the hosting context and even less expressive with regard to the cognition of people with disabilities who live in these situations.
Empirical studies and clinical practice show purely quantitative aspects from psychological evaluation instruments. Even considering the qualitative considerations of the professional application, contextual aspects, such as location and access to new environments, as well as personal aspects, such as disability characteristics, can influence the evaluation process, which may not necessarily reflect a cognitive profile of the individual concerned.
Thus, considering the peculiarities that mark the development of children with disabilities and the characteristics that distinguish the hosting contexts from other contexts, the use of two important concepts already mentioned in the literature is proposed, namely: functional cognition and ecological tasks.
Functional cognition is understood as a theoretical tool for the analysis and production of instruments that can enable ecological access to the cognitive functioning of people with disabilities under institutional care. Albeit the fact that its objective is to guarantee rights and protection, institutional care is a measure that is not effective in terms of preserving aspects of cognitive development. It is vital to consider ecological approaches, that is, approaches that allow for a more reliable analysis of the functional cognitive performance of the individuals evaluated, seeking to reduce the observer’s bias, naturally present in the evaluation processes.
Additionally, the concept of ecological tasks is proposed as a theoretical tool for the analysis and production of instruments that can enable ecological access to the cognitive behavior of people with disabilities, especially in institutional care situations. With this, it is expected to obtain more accurate information on cognitive behavior, affecting the production of effective interventions that will enable the theoretical and methodological improvement of the evaluation instruments, especially for people with disabilities.
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1ORCID: 0000-0002-7985-9728
https://orcid.org/0000-0002-7985-9728
Instituição: Universidade Federal do Pará
2ORCID: 0000-0003-4724-4443
https://orcid.org/0000-0003-4724-4443
Instituição: Universidade Federal do Pará
3ORCID: 0000-0003-0795-2998
https://orcid.org/0000-0003-0795-2998
Instituição: Universidade Federal do Pará