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Schizophrenia, instrumental activities of daily living and executive functions: a qualitative multidimensional approach1 1 Study approved by the opinion nº 673/2014 of the Ethics Committee of the Higher School of Health Technology of Porto and by the opinion nº 638.793 of the Ethics Committee of the Health Sector of the Federal University of Paraná. Work linked to the Ph.D. research project: “Rehabilitation of the executive functions of people with schizophrenia: proposal of a serious game contextualized in the instrumental activities of daily life” (FPCE -UP).

Abstract

Introduction:

People with schizophrenia often present difficulties in social and occupational reintegration that may be associated with problems in performing daily activities. Executive dysfunction is one of the factors associated to these difficulties.

Objective:

In this study we sought to know and analyze the potentialities and difficulties of people with schizophrenia regarding the Instrumental Activities of Daily Living, specifically the components related to executive dysfunction through the perception of people with schizophrenia, family members and professionals who participate in support associations in Brazil and In Portugal. Method: Data was obtained through 2 focus groups for each representation (users, family and professionals), with a mean of 6.7 participants per group (N=40). Data were analyzed through Interpretive Phenomenological Analysis.

Results:

We identified three main themes and their respective subtopics: The to (not) do in its essence - lack of meaning, dissatisfaction and lack of autonomy; Impediments - decreased volition, inflexibility and action and difficulty in planning routines and tasks; Environmental factors - family, association and professionals.

Conclusion:

We conclude that the insufficiency in the occupational performance of people with schizophrenia in relation to IADL, directly related to executive dysfunction, reveals the importance of specific rehabilitation programs for this population, aiming at cognitive and occupational improvements.

Keywords:
Schizophrenia; Executive Function; Daily Activities

Resumo

Introdução:

Pessoas com esquizofrenia frequentemente apresentam dificuldades na reinserção social e ocupacional, as quais podem estar associadas a problemas na realização das atividades cotidianas. A disfunção executiva é um dos fatores que têm sido relacionados a essas dificuldades. Objetivo: Conhecer e analisar as potencialidades e dificuldades de pessoas com esquizofrenia frente às Atividades Instrumentais da Vida Diária, especificamente os componentes relacionados à disfunção executiva.

Método:

Participaram da pesquisa pessoas com esquizofrenia, familiares e profissionais inseridos em associações de apoio no Brasil e em Portugal. Para a obtenção dos dados, foram realizados dois grupos focais para cada grupo ‒ usuários, familiares e profissionais ‒, com média de 6,7 participantes (N=40). Os dados foram analisados através da Análise Fenomenológica Interpretativa.

Resultados:

Foram identificados três temas principais e seus respectivos subtemas: O (não) fazer na sua essência - falta de significado, insatisfação e falta de autonomia; Impedimentos - diminuição da volição, inflexibilidade de ação e dificuldade de planejar rotinas e tarefas; Fatores Ambientais - família, associação e profissionais.

Conclusão:

A insuficiência no desempenho ocupacional das pessoas com esquizofrenia que participaram deste estudo, relativamente às Atividades Instrumentais da Vida Diária, está diretamente relacionada aos componentes da disfunção executiva e revela a importância de programas de reabilitação específicos para essa população, visando a melhorias cognitivas e ocupacionais.

Palavras-chave:
Esquizofrenia; Função Executiva; Atividades Cotidianas

1 Introduction

Several interventions have been proposed under the aegis of the Psychosocial Rehabilitation, which advocates the transformation of the healthcare services and society, proposing the facilitation of the functioning of individuals through the minimization of disabilities and disadvantages of people with mental disorders. One of the precepts of the Psychosocial Rehabilitation is that the service spaces enable to construct or reinvent everyday life through ​interdisciplinary dialogues and intersectoral actions, involving professionals, family members, and users, proposing the de-stigmatization and the education of society (AMORIM; OTANI, 2015AMORIM, M. D. F.; OTANI, M. A. P. A reabilitação psicossocial nos Centros de Atenção Psicossocial: uma revisão integrativa. SMAD Revista Eletrônica Saúde Mental Álcool e Drogas, Ribeirão Preto, v. 11, n. 3, p. 168-177, 2015.; HIRDES; KANTORSKI, 2004HIRDES, A.; KANTORSKI, L. P. Reabilitaçao psicossocial: objetivos, princípios e valores. Revista de Enfermagem UERJ, Rio de Janeiro, v. 12, n. 12, p. 217-221, 2004.).

The participation in socio-representative associations has been a locus for the development of skills and abilities of people with mental disorders. It allows the sharing of individual learning and the construction of theoretical structures that support and refer to the associated group. According to Rodrigues, Brognoli, and Spricigo (2006RODRIGUES, J.; BROGNOLI, F. F.; SPRICIGO, J. S. Associação dos usuários de um centro de atenção psicossocial: desvelando sua significação. Texto & Contexto - Enfermagem, Florianópolis, v. 15, n. 2, p. 240-245, 2006., p. 242), this associative experience enables an interpretation of reality that “organizes the relationships of the individual with the world and guides their conduct and behavior in the social environment”. Also, according to Nicolau (2015NICOLAU, S. M. Grupos na atenção básica: enraizar-se em uma comunidade. In: MAXIMINO, V.; LIBERMAN, F. Grupos e terapia ocupacional: formação, pesquisa e ações. São Paulo: Summus Editorial, 2015. p. 264-274., p. 267), teamwork “enhances transformations in daily activities and in the ways people interrelate.”

In our professional practice as occupational therapists both in Brazil and in Portugal, we noticed that people with mental disorders, especially people with schizophrenia, have limitations in the execution of daily actions, necessary for work, engagement and social participation, corroborating with the findings of Katz et al. (2007KATZ, N. et al. Validity of the executive function performance test in individuals with schizophrenia. OTJR. Occupational Participation & Health, Thousand Oaks, v. 27, n. 2, p. 44-52, 2007.), Monteiro e Louzã (2007MONTEIRO, L. C.; LOUZÃ, M. R. Cognitive deficits in schizophrenia: functional consequences and therapeutic approaches. Archives of Clinical Psychiatry, São Paulo, v. 34, n. 2, p. 179-183, 2007.) e Ricci e Leal (2016RICCI, E. C.; LEAL, E. M. Cotidiano, esquizofrenia e narrativas da experiência de adoecimento. Cadernos de Terapia Ocupacional da UFSCar, São Carlos, v. 24, n. 2, p. 363-372, 2016.). The need to understand these limitations is justified by the understanding that man and social contexts are related, constituting the individual and society, dialogically, through human action/activity on nature (SIRGADO, 2000SIRGADO, A. P. O social e o cultural na obra de Vigotski. Educação & Sociedade, Campinas, v. 21, n. 71, p. 45-78, 2000.; VIGOTSKI, 2000VIGOTSKI, L. S. Lev S. Vigotski: manuscrito de 1929. Educação & Sociedade, Campinas, v. 21, n. 71, p. 21-44, 2000.; ZANELLA, 2004ZANELLA, A. V. Atividade, significação e constituição do sujeito: considerações à luz da psicologia histórico-cultural. Psicologia em Estudo, Maringá, v. 9, n. 1, p. 127-135, 2004.; TOASSA, 2016TOASSA, G. “Atrás da consciência, está a vida”: o afastamento teórico Leontiev-Vigotski na dinâmica dos círculos Vigotskianos. Educação & Sociedade, Campinas, v. 37, n. 135, p. 445-462, 2016.). Thus, we understand that it is probably in this dialogue that the tasks are signified and organized in families, in communities, in territories, including the (re) insertion, or not, of individuals with occupational limitations.

Studies have reported that executive dysfunction is one of the factors that influence occupational deficits in people with schizophrenia at home and in the community as well as interfering in the achievement of positive results in the processes of social reintegration (BARCH; CEASER, 2012BARCH, D. M.; CEASER, A. Cognition in schizophrenia: core psychological and neural mechanisms. Trends in Cognitive Sciences, Kidlington, v. 16, n. 1, p. 27-34, 2012.; BAUM; KATZ, 2010BAUM, C.; KATZ, N. Occupational therapy approach to assessing the relationship between cognition and function. In: MARCOTTE, T. D.; GRANT, I. Neuropsychology of everyday functioning. New York: Guilford Press, 2010. p. 63-90.; CLARK; WARMAN; LYSAKER, 2010CLARK, L. K.; WARMAN, D.; LYSAKER, P. H. The relationships between schizophrenia symptom dimensions and executive functioning components. Schizophrenia Research, Amsterdam, v. 124, n. 1-3, p. 169-175, 2010.; GREENWOOD et al., 2008GREENWOOD, K. E. et al. Executive functioning in schizophrenia and the relationship with symptom profile and chronicity. Journal of the International Neuropsychological Society, New York, v. 14, n. 5, p. 782-792, 2008.; HADAS-LIDOR et al., 2001HADAS-LIDOR, N. et al. Effectiveness of dynamic cognitive intervention in rehabilitation of clients with schizophrenia. Clinical Rehabilitation, London, v. 15, n. 4, p. 349-359, 2001.; KLUWE-SCHIAVON et al., 2013KLUWE-SCHIAVON, B. et al. Executive functions rehabilitation for schizophrenia: a critical systematic review. Journal of Psychiatric Research, Oxford, v. 47, n. 1, p. 91-104, 2013.; LYSAKER; WHITNEY; DAVIS, 2006LYSAKER, P. H.; WHITNEY, K. A.; DAVIS, L. W. Awareness of illness in schizophrenia: associations with multiple assessments of executive function. The Journal of Neuropsychiatry and Clinical Neurosciences, Arlington, v. 18, n. 4, p. 516-520, 2006.; SETER et al., 2011SETER, C. et al. Everyday action planning in schizophrenia. Neuropsychological Rehabilitation, London, v. 21, n. 2, p. 224-249, 2011.). The Executive Functions (EF) are flexible and adaptive behavior actions in the individual´s interaction with the world, in an intentional way. This set of skills allows planning, monitoring behavior, directing and sustaining attention in a task (LAWS et al., 2008LAWS, K. R.; PATEL, D. D.; TYSON, P. J. Awareness of everyday executive difficulties precede overt executive dysfunction in schizotypal subjects. Psychiatry Research, Amsterdam, v. 160, n. 1, p. 8-14, 2008.). Lezak et al. (2004LEZAK, M. D. et al. Neuropsychological assessment. New York: Oxford University Press Norris, 2004.) define executive functioning through four basic components: a) volition, which involves aptitudes, ​as in formulating goals, ​the intention, motivation and self-awareness; b) planning, which is the capacity for conceptual formation, abstraction, creating of alternatives for action, formulating the steps and sequencing of an activity; c) intentional action, which encompasses the skills necessary to transpose an intention or plan of a productive activity into an action; d) effective performance, which includes capacities, such as self-monitoring, self-direction, self-regulation, ​relative to ​intensity, rhythm and other qualitative aspects of the action.

The advancement of research in schizophrenia has led to effective treatment approaches in reducing the positive symptoms of the disease. However, there are still limitations to performing complex tasks, such as the Instrumental Activities of Daily Life (IADL), which are activities guided to interact with the environment, support daily life at home and in the community, as well as confer autonomy on the performance of occupational roles in the social context in which individuals are inserted (AMERICAN..., 2015AMERICAN OCCUPATIONAL THERAPY ASSOCIATION - AOTA. Estrutura da prática da terapia ocupacional: domínio e processo. Revista de Terapia Ocupacional da Universidade de São Paulo, São Paulo, v. 26, p. 1-49, 2015. Edição Especial.; LIPSKAYA; JARUS; KOTLER, 2011LIPSKAYA, L.; JARUS, T.; KOTLER, M. Influence of cognition and symptoms of schizophrenia on IADL performance. Scandinavian Journal of Occupational Therapy, Oslo, v. 18, n. 3, p. 180-187, 2011.). Performing IADL usually requires the handling of instruments or tools, requiring skills such as planning, self-monitoring, and problem-solving skills. However, factors impairing the performance of people with schizophrenia in IADL are still poorly understood (LIPSKAYA; JARUS; KOTLER, 2011; NAKANISHI et al., 2007NAKANISHI, M. et al. Symptom dimensions and needs of care among patients with schizophrenia in hospital and the community. Psychiatry and Clinical Neurosciences, Australia, v. 61, n. 5, p. 495-501, 2007.), and it is necessary to explore how these occupational dysfunctions are related to deficits in executive functions.

Thus, the objective of this study was to know and analyze the potentialities and difficulties of people with schizophrenia in relation to IADL, specifically, the components related to executive dysfunction through the perception of people with schizophrenia, family members, and professionals who participate in associations to support individuals and families with mental disorders.

2 Method

This study was carried out with the participation of people from the Arnaldo Gilberti Association (Brazil) and the Nova Aurora Association (Portugal), partners of the Federal University of Paraná (Brazil) and the University of Porto (Portugal) respectively, in several actions (curricular internship, extension projects and research) coordinated by the authors. The first one presents ​as its mission the favoring of the autonomy of people with mental disorders, supporting them in their socioeconomic, political and cultural needs, through diverse workshops, ​an income generation project, among other activities offered. It aims to contribute to the reduction of stigma and enable the exercise of citizenship. The second one is to promote quality of life, functionality and social insertion, with a primary focus on combating stigma, through programs of activities that aim at socioeconomic and cultural support, enhancing opportunities for participation and social insertion.

The participants were allocated to three groups to obtaining the data: people with schizophrenia, professionals, and relatives of people with schizophrenia. The inclusion criterion common to all groups was the participation in an association of support for people with schizophrenia.

The following specific inclusion criteria were listed: a) people with schizophrenia: diagnosis of schizophrenia confirmed by a psychiatrist, ​be over 18 years old and ​be on ​steady ​use ​of medication for at least six months; b) relatives: be a first-degree relative of a person with schizophrenia and over be 18 years old; c) professionals: be a health professional or social worker with at least two years of experience in the care of people with schizophrenia.

All users of the associations that met the inclusion criteria were invited to join the study through telephone contact provided by the secretariats of the associations, where the objectives and procedures of the groups were exposed. Those who were interested in participating were called to join the groups at a date and time previously scheduled.

This study is part of the Ph.D. project of the first author, held at the Faculty of Psychology and Educational Sciences of the University of Porto, and supported by the opinion nº 673/2014 of the Ethics Committee of the School of Health Technology of Porto and by the opinion nº 638.793 of the Ethics Committee of the Health Sector of the Federal University of Paraná. All selected members participated in the study after agreeing, reading and signing the Informed Consent Term.

Focal Groups were conducted to learn the performance of people with schizophrenia in the IADL. This is a methodological procedure that offers a way to generate data from the qualitative interaction, exploring different conceptions about a topic. In this context, the participants express and clarify their points of view on the proposed theme (MAZZA; MELO; CHIESA, 2009MAZZA, V. D. A.; MELO, N. S.; CHIESA, A. M. O grupo focal como técnica de coleta de dados na pesquisa qualitativa: relato de experiência. Cogitare Enfermagem, Curitiba, v. 14, n. 1, p. 183-188, 2009.). The focus on ​the ​subjective aspects of ​the participant’s narratives allowed to highlight the understanding and interpretation of the social reality experienced, as well as the meanings given by the actors to their lived experiences (GALHEIGO, 2003GALHEIGO, S. M. O cotidiano na terapia ocupacional: cultura, subjetividade e contexto histórico-social. Revista de Terapia Ocupacional da Universidade de São Paulo, São Paulo, v. 14, n. 3, p. 104-109, 2003.).

In this sense, we investigate three guiding questions associated with the occupational performance of this people in the IADL: a) “if” and “how” they perform them; b) difficulties of achievement and indicators of executive dysfunction; c) strategies used to overcome or compensate for difficulties.

Six focal groups (two from each group) were established in institutions that support users with schizophrenia, one in Portugal and another in Brazil. The two associations share the same principles of social and occupational reintegration, offering users and families activities aimed at reintegrating people with experience of mental illness in the work and social contexts.

The sessions were recorded in audio and video from January to July 2015, and each focus group lasted approximately 90 minutes, conducted under a pre-established guide, common to all groups. The guide was composed of five facilitative domains on the theme: 1) opening (presentation and objectives); 2) introduction to the topic (sensitization, daily activities and people with schizophrenia); 3) transition to the topic (contextualization of the IADL); 4) key issues (such as, why, difficulties), and 5) finalization.

After performing each group, the data were transcribed and analyzed through Interpretive Phenomenological Analysis (IPA), which provides for the following steps: several transcription readings, identification of initial themes, grouping, and definition of the main themes. This method of analysis enables the understanding of subjective experience, as well as the cognitions and emotions that ground the opinions on specific individuals in a descriptive and profound way (BIGGERSTAFF; THOMPSON, 2008BIGGERSTAFF, D.; THOMPSON, A. R. Interpretative phenomenological analysis (IPA): a qualitative methodology of choice in healthcare research. Qualitative Research in Psych, United Kingdom, v. 5, n. 3, p. 214-224, 2008.).

3 Results

There were 40 participants in the study. The specific sociodemographic characteristics of each group - professionals, people with schizophrenia and family members - are described below, in Tables 1, 2 and 3, respectively.

Table 1
Sociodemographic data of participants - professionals.

Table 2
Sociodemographic data of the participants - people with schizophrenia.

Table 3
Sociodemographic data of participants - relatives of people with schizophrenia.

The Interpretive Phenomenological Analysis (IPA) had three main themes disaggregated in their respective subtopics and presented in Table 4. The subtopics of the main themes “Do (not) it at their core” and “Limitations” were related to the probable affected executive functions of the participants. The subtopics of the theme “Environmental factors” emerge as a reaction of the environment to the difficulties presented, and can be a support factor or barrier.

Table 4
Themes and sub-themes identified in IPA.

4 Discussion

Two aspects guided and systematized the discussion of the results. The first aspect is the subjective perspective applied in the study, with the analysis of the listening of the participants from three points of view - users, family and professionals -, which led to adopt those inherent to culture in the which participants are inserted as reference standards for the performance of IADL - Brazil and Portugal -, mainly described in the discourse of family members and professionals. This option is based on the conception of Vygotsky (REY, 1993REY, F. G. Psicología social, teoría marxista y el aporte de Vigotsky. Revista Cubana de Psicologia, Cuba, v. 10, n. 2, p. 164-169, 1993.), who declares that each person is the reflection of the totality of social relationships since all are embedded in forms of daily organization that are concretized in values, social practices, modes of being as a characteristic of a culture. The second aspect refers to the fact that there are no differences in the results presented by the Portuguese and Brazilian participants, regarding the types of difficulties in performing the IADL, as well as their facilitators and barriers, which allowed to discuss the set of results as a whole.

The reports of the three groups reveal that the occupational performance of people with schizophrenia in the IADL is impaired when it comes to doing content and how to do it. The limitations between these themes/sub-themes are subtle, intertwined in their causalities and consequences, and eventually suggest some overlap, such as lack of meaning and volition. However, they were very explicit in the participants´ discourses that we have chosen to approach each separately.

4.1 The Doing (or not) in its essence

The first theme highlights difficulties that characterize the functionality of people with schizophrenia, through subjective elements about the sense of doing it or not doing it. When deepening into the analysis of the doing (or not) in its essence, we found subtopics related to lack of meaning, dissatisfaction and lack of autonomy for action that are also associated with other areas of occupational performance of people with schizophrenia such as work and leisure (MOTIZUKI; MARIOTTI, 2014MOTIZUKI, C. S.; MARIOTTI, M. C. Percepções de indivíduos com transtornos mentais e familiares sobre o desempenho ocupacional: contribuições da terapia ocupacional. Revista de Terapia Ocupacional da Universidade de São Paulo, São Paulo, v. 25, n. 2, p. 101-110, 2014.).

4.1.1 Lack of meaning

In this subtheme, there is an apparent lack of meaning for people with schizophrenia when performing the IADL. Taking as a theoretical reference the Vygotskian perspective for understanding this topic, meaning refers to “what things mean.” The meaning is related to the appropriation of the activity, involving “know-how”, “understanding” and the dynamics of the relation between instruments-actions-objectives (ZANELLA, 2004ZANELLA, A. V. Atividade, significação e constituição do sujeito: considerações à luz da psicologia histórico-cultural. Psicologia em Estudo, Maringá, v. 9, n. 1, p. 127-135, 2004.). Thus, from this conception, we understand that, for these participants, the performance of IADL seems to be “not very good” for people with schizophrenia, especially to understanding the objectives of the tasks required, which, as a rule, precedes the action, that is, “I act according to what I wish to accomplish.”

In the analysis of these reports, we realized that the doing dynamics of people with schizophrenia and their respective goals do not match the cultural standards expected in their countries. We emphasize that the non-meaning of doing, apparently is not related to issue of not knowing how to do, but to the non-meaning of “why” to perform the IADL daily. Not doing activities that are expected and, above all, important in the daily lives of people can lead to negative reactions and consequences, such as repeated complaints from family members. The same behavior was observed in participants from Brazil and Portugal.

4.1.2 Dissatisfaction

The subtheme dissatisfaction refers to the levels of satisfaction and acceptance of the results of tasks performed by people with schizophrenia, by family members and professionals. We analyzed this discussion from the satisfaction parameters referenced by the theory of discrepancy2 2 Discrepancy Theory: According to Williams (1994) the discrepancy model argues that satisfaction is entirely relative, defined in large part by the perceived discrepancy between patient expectations and real experience. , whose levels are calculated based on the difference between the expected result and the perception of the experience (ESPERIDIÃO; TRAD, 2006ESPERIDIÃO, M. A.; TRAD, L. A. B. Avaliação de satisfação de usuários : considerações teórico-conceituais. Caderno de Saúde Publica, Rio de Janeiro, v. 22, n. 6, p. 1267-1276, 2006.).

From this understanding, the results obtained reveal the dissatisfaction of the family members and professionals involved, since when the activities are carried out by people with schizophrenia, they are not in the pattern expected/established/desired by them. However, contradictorily, for most participants with schizophrenia, the tasks are performed with satisfaction, demonstrating a difficulty of self-monitoring in the execution of these activities. In this set of participants, we can deduce that the functionality and perception of performance of people with schizophrenia in the IADL are below expectations and do not correspond to the expectations of their relatives and professionals. Changes in performance may also generate overload for the caregivers, who often need to redo tasks as reported by family participants. Thus, the meaning of the IADL for the family and professional groups have a social value relative to autonomy and independence and are similar in both groups. However, for the group of users, we suggest that meaning seem to be related to subjective values, linked to the low perception of social values.

Nonetheless, we also identify another perspective of dissatisfaction observed in the discourse of people with schizophrenia when referring to the collection imposed on the quality of the tasks. From their point of view, they expect their behavior/performance to be accepted, but they are often perceived as unsatisfactory. There is a space of divergence here that may be related to limitations in the ability to self-monitor and self-regulate the qualitative elements in the performance of the activity, as well as the low tolerance and frustration, which is related to the effective performance component of the EF. Executive dysfunction can be seen in practical difficulties, as well as in behavioral responses, such as motivational lability, inhibition of response or even dealing with tasks that vary in degree of relevance and priority (SABOYA et al., 2007SABOYA, E. et al. Disfunção executiva como uma medida de funcionalidade em adultos com TDAH. Jornal Brasileiro de Psiquiatria, Rio de Janeiro, v. 56, p. 30-33, 2007. Suplemento 1.).

4.1.3 Lack of autonomy

The autonomy is related to the capacity for self-regulation when facing a situation. This quality calls for the responsibility to act in the face of a decision made, that is, it requires consideration of several alternatives, the possibility of choosing the right one and putting it into action (ZATTI, 2007ZATTI, V. Autonomia e educação em Immanuel Kant e Paulo Freire. Porto Alegre: EDIPUC, 2007.). From this reference, the results in this group of participants show apathy towards the attitudes required daily. It seems that although there is apparently the capacity to perform, from being independent to action, people with schizophrenia need to be oriented or even urged to perform daily activities, which reveals the lack of autonomy, that is, the difficulty of make the decision and start the activity. The behavior of these individuals in the IADL seems to demonstrate the need to be constantly guided, reflecting the lack of initiative for the daily demands.

The performance of an objective that generates an action - or the initiation, maintenance, modification or even interruption of an activity - is correlated with the autonomy, the functional expression of the element of the EF, that is, the intentional action. Thus, the lack of autonomy described in the discourse of these participants can be explained by an executive dysfunction, namely in the subset of intentional action (LEZAK et al., 2004LEZAK, M. D. et al. Neuropsychological assessment. New York: Oxford University Press Norris, 2004.; POWELL; VOELLER, 2004POWELL, K. B.; VOELLER, K. K. S. Prefrontal executive function syndromes in children. Journal of Child Neurology, Minnesota, v. 19, n. 10, p. 785-797, 2004.).

4.2 Limitations

The second main theme brings the three predominant difficulties in the performance of IADL: decreased volition, inflexibility of thought and action, and difficulty in planning and organizing routines and tasks, which, according to the EF reference proposed by Lezak et al. (2004LEZAK, M. D. et al. Neuropsychological assessment. New York: Oxford University Press Norris, 2004.), it allows to associate the difficulties for the elements of executive dysfunction.

4.2.1 Decrease in volition

Volition or will refers to the process by which people are motivated and choose what to do. The concept of volition admits that all human beings have the desire to engage in occupations and that this desire is continually shaped through lived experiences, that is, how tasks are performed (FORSYTH; KIELHOFNER, 2011FORSYTH, K.; KIELHOFNER, G. The model of human occupation. In: DUNCAN, E. Foundations for practice in occupational therapy. London: Elsevier Inc., 2011. p. 51-80.). The will refers to thoughts and feelings that occur in a cycle: thinking about the possibilities of what to do, choosing what to do, experiencing doing and then interpreting the experience. Unlike the motivation, which has the direction of the environment for the individual (for example, a reward), the volition is intrinsic - from the individual to the environment (for example, preferences, identity) and, therefore, it can minimize obstacles found in the performance as well as facilitating the initiation of actions and maximizing attention during the execution. Considering the existence of a threshold of intention for action, when desire is below that threshold, we can determine that it is the motivation that drives doing. Likewise, when desire crosses a threshold of intention at a purely motivational level, it reaches the volition (SHAH; GARDNER, 2008SHAH, J. Y.; GARDNER, W. L. Handbook of motivation science. New York: Guilford Press, 2008.).

Described as one of the negative symptoms of schizophrenia (FERREIRA JUNIOR et al., 2010FERREIRA JUNIOR, B. et al. Alterações cognitivas na esquizofrenia: atualização. Revista de Psiquiatria do Rio Grande do Sul, Porto Alegre, v. 32, n. 2, p. 57-63, 2010.; MONTEIRO; LOUZÃ, 2007MONTEIRO, L. C.; LOUZÃ, M. R. Cognitive deficits in schizophrenia: functional consequences and therapeutic approaches. Archives of Clinical Psychiatry, São Paulo, v. 34, n. 2, p. 179-183, 2007.; NAKANISHI et al., 2007NAKANISHI, M. et al. Symptom dimensions and needs of care among patients with schizophrenia in hospital and the community. Psychiatry and Clinical Neurosciences, Australia, v. 61, n. 5, p. 495-501, 2007.), and as one of the elements of executive dysfunction (NEILL; ROSSELL, 2013NEILL, E.; ROSSELL, S. L. Executive functioning in schizophrenia: the result of impairments in lower order cognitive skills? Schizophrenia Research, Amsterdam, v. 150, n. 1, p. 76-80, 2013.; ORELLANA; SLACHEVSKY, 2013ORELLANA, G.; SLACHEVSKY, A. Executive functioning in schizophrenia. Frontiers in Psychiatry, Switzerland, v. 4, p. 1-35, 2013.), the lack of volition was mentioned in the participants´ reports. Procrastination may also be a manifestation of the lack of volition and may be related to a lower degree of attention and long-term reward. This result may confirm what we have previously proposed about difficulties in occupational performance in IADL not related to the lack of competence, but to be an aspect associated with executive dysfunction (CAHN-WEINER; BOYLE; MALLOY, 2002CAHN-WEINER, D.; BOYLE, P. A.; MALLOY, P. F. Tests of executive function predict instrumental activities of daily living in community-dwelling older individuals. Applied Neuropsychology, Copenhagen, v. 9, n. 3, p. 187-191, 2002.; ORELLANA; SLACHEVSKY, 2013).

4.2.2 Inflexibility of thought

One of the reported characteristics about the attitude of people with schizophrenia is the behavioral perseveration in the accomplishment of tasks and in the confrontation of daily situations (FERREIRA JUNIOR et al., 2010FERREIRA JUNIOR, B. et al. Alterações cognitivas na esquizofrenia: atualização. Revista de Psiquiatria do Rio Grande do Sul, Porto Alegre, v. 32, n. 2, p. 57-63, 2010.; MONTEIRO; LOUZÃ, 2007MONTEIRO, L. C.; LOUZÃ, M. R. Cognitive deficits in schizophrenia: functional consequences and therapeutic approaches. Archives of Clinical Psychiatry, São Paulo, v. 34, n. 2, p. 179-183, 2007.; ORELLANA; SLACHEVSKY, 2013ORELLANA, G.; SLACHEVSKY, A. Executive functioning in schizophrenia. Frontiers in Psychiatry, Switzerland, v. 4, p. 1-35, 2013.). In this study, the reports that concretized this concept are present, mostly, in the discourse of family and professionals. There is a perceived intuition in these two groups that people with schizophrenia, although potentially empowered to perform everyday tasks, limited in their ability to overcome any unplanned demands. This is also described in issues such as time, place or materials, demonstrating a decrease in mental flexibility.

The inflexibility or perseverance of thought and, consequently, actions and therefore the lack of volition, is related to executive dysfunction, as already described, and also to limitations in the social and occupational performance of this population.

4.2.3 Difficulty in planning and organizing routines and tasks

Planning is an important step for the success in achieving a goal. Defined as the ability to think about the future, it consists of choosing the most efficient strategies, determining the steps and organizing them in sequence to complete a successful task (SETER et al., 2011SETER, C. et al. Everyday action planning in schizophrenia. Neuropsychological Rehabilitation, London, v. 21, n. 2, p. 224-249, 2011.). The organization is an intrinsic condition, both for the planning and the execution of the activities. This is related to how information is available or a system to achieve desired results. The organization and planning are elements of the EF and are directly related to the expected occupational performance in the day-to-day tasks (LAWS; PATEL; TYSON, 2008LAWS, K. R.; PATEL, D. D.; TYSON, P. J. Awareness of everyday executive difficulties precede overt executive dysfunction in schizotypal subjects. Psychiatry Research, Amsterdam, v. 160, n. 1, p. 8-14, 2008.).

The difficulty in planning activities may be one of the factors that explain the systematic supervision of the users, found in the reports of family members and professionals investigated. It has also been observed that they perform the tasks in advance, to avoid disruptions and frustrations for both parties.

In order to systematize the findings in this discussion so far, Figure 1 shows the relationship between the listed difficulties and the presence of executive dysfunction.

Figure 1
Relationship between the components of the executive functions and the difficulties reported in this study.

Thus, the results are similar to many studies (HADAS-LIDOR et al., 2001HADAS-LIDOR, N. et al. Effectiveness of dynamic cognitive intervention in rehabilitation of clients with schizophrenia. Clinical Rehabilitation, London, v. 15, n. 4, p. 349-359, 2001.; KLUWE-SCHIAVON et al., 2013KLUWE-SCHIAVON, B. et al. Executive functions rehabilitation for schizophrenia: a critical systematic review. Journal of Psychiatric Research, Oxford, v. 47, n. 1, p. 91-104, 2013.; LAWS; PATEL; TYSON, 2008LAWS, K. R.; PATEL, D. D.; TYSON, P. J. Awareness of everyday executive difficulties precede overt executive dysfunction in schizotypal subjects. Psychiatry Research, Amsterdam, v. 160, n. 1, p. 8-14, 2008.; LIPSKAYA; JARUS; KOTLER, 2011LIPSKAYA, L.; JARUS, T.; KOTLER, M. Influence of cognition and symptoms of schizophrenia on IADL performance. Scandinavian Journal of Occupational Therapy, Oslo, v. 18, n. 3, p. 180-187, 2011.; SETER et al., 2011SETER, C. et al. Everyday action planning in schizophrenia. Neuropsychological Rehabilitation, London, v. 21, n. 2, p. 224-249, 2011.), regarding the relationship between EF and functionality, that is, problems in executive functioning directly affect the pattern of daily activities, as well as the quality of life and autonomy of people with schizophrenia (EVANS et al., 2004EVANS, J. D. et al. Cognitive and clinical predictors of success in vocational rehabilitation in schizophrenia. Schizophrenia Research, Amsterdam, v. 70, n. 2-3, p. 331-342, 2004.).

4.3 Environmental factors (facilitators and barriers)

The challenge of experiencing and coping with the difficulties faced by people with schizophrenia was the third major theme emerging in this study, which demonstrates the strategies adopted by the users, the family members and the professionals in facing the obstacles found in the performance of IADL. Fundamentally, we found three resources used, described below.

4.3.1 Family - Stimulus and Obstacle

The substitution of the hospital-centered model by the Psychosocial Rehabilitation places the family as a central support network in the reorganization of the social networks of individuals with schizophrenia, granting them a task that demands preparation and dedication (CASAGRANDE; MARIOTTI; CARDOSO, 2015CASAGRANDE, R. P.; MARIOTTI, M. C.; CARDOSO, M. DE M. Contribuições da Terapia Ocupacional no apoio e assistência a familiares de pessoas com transtornos mentais. Cadernos de Terapia Ocupacional da UFSCar, São Carlos, v. 23, n. 2, p. 427-437, 2015.; SANTOS; CAPOCCI, 2003SANTOS, S. S.; CAPOCCI, P. O. Importância do apoio familiar aos pacientes com esquizofrenia. Revista de Enfermagem Unisa, Santo Amaro, v. 4, p. 13-16, 2003.). Thus, this sub-theme demonstrates the adjustment of all the participants of the two countries to the new models of rehabilitation advocated by the public policies of mental health in Brazil and Portugal, regarding the proposal of the family as a partner in overcoming difficulties. It should be noted that, in both countries, the Psychosocial Rehabilitation precepts are used as guiding principles for mental health care, called the Psychosocial Care Network (RAPS) in Brazil and the National Network of Continuing Integrated Care Mental Health (RNCCI-CCISM), in Portugal (BRASIL, 2011BRASIL. Portaria nº 3.088, de 23 de dezembro de 2011. Institui a Rede de Atenção Psicossocial para pessoas com sofrimento ou transtorno mental e com necessidades decorrentes do uso de crack, álcool e outras drogas, no âmbito do Sistema Único de Saúde. Diário Oficial [da] República Federativa do Brasil, Brasília, DF, 30 dez. 2011.; PORTUGAL, 2011PORTUGAL. Decreto Lei n° 8, de 28 de janeiro de 2011. Redefine a vertente estrutural do Plano Nacional de Saúde Mental 2007-2016 e alarga a Rede Nacional de Cuidados Integrados (RNCCI). Diário da República, Portugal, 28 jan. 2011.).

Notably, the family members continually encourage users to be active and carry out day-to-day activities. However, contradictorily, sometimes they are also agents of obstruction of the doing when they do not facilitate or do not guide the accomplishment of the tasks. As an important part of the rehabilitation process, it was evidenced in this study that families of people with schizophrenia should be integrated into the treatment programs to guide them about strategies that potentiate their capacities, as well as provide optimize and resignify the doing of their limbs affected by the pathology.

4.3.2 Share with peers - associations

The second sub-theme on environmental factors (facilitators and barriers) is also closely associated with the psychiatric reform and the new equipment that emerged from it. The modality of coexistence in associations was pointed out as an efficient device for the improvement of several aspects of the life of the people with schizophrenia, namely in the motivation for the daily doing. The social support networks contribute to face the problems experienced, providing support and protection to the individual (BRUSAMARELLO et al., 2011BRUSAMARELLO, T. et al. Redes sociais de apoio de pessoas com transtornos mentais e familiares. Texto & Contexto - Enfermagem, Florianópolis, v. 20, n. 1, p. 33-40, 2011.; FERRO et al., 2012FERRO, L. F. et al. Grupo de convivência em saúde mental: perspectivas de usuários e a experiência do curso de Terapia Ocupacional da Universidade Federal do Paraná. Revista de Terapia Ocupacional da Universidade de São Paulo, São Paulo, v. 23, n. 2, p. 146-152, 2012.).

For both users and their families, this space is reported as a place to alleviate stigma and strengthen potentialities. These social devices allow an egalitarian experience, favoring the development or the rescue of capacities and abilities through different ways of doing, establishing it as an effective resource in the psychosocial rehabilitation of the people with schizophrenia.

4.3.3 Health professionals and social assistance

Despite the differences in techniques used by the professionals participating in the two countries studied, the effect produced seems to be equivalent. In Portugal, professionals reported specific procedures for the training of IADL in laboratory context, through simulation of activities in the Association´s premises, and in a real context, when the activities were trained/carried out at home visits or in supermarket, shopping, etc. ., as well as techniques of approaches for cognitive dysfunction through computational cognitive rehabilitation programs.

Otherwise, Brazilian professionals reported that the treatment of occupational dysfunction is performed through cognitive therapy, family care, and skills training in a laboratory context. No specific approaches have been reported for cognitive deficits or for improving the occupational performance of IADL.

We observed that, despite the different treatments given to the difficulties of performing the IADL by people with schizophrenia, both groups of professionals reported observing improvement of the occupational performance of the users in these specific activities (DOMINGO et al., 2015DOMINGO, S. Z. et al. Cognition cognitive performance associated to functional outcomes in stable outpatients with schizophrenia. Schizophrenia Research. Cognition, New York, v. 2, n. 3, p. 146-158, 2015.; SAVLA et al., 2012SAVLA, G. N. et al. Dimensions of executive functioning in schizophrenia and their relationship with processing speed. Schizophrenia Bulletin, Budapest, v. 38, n. 4, p. 760-768, 2012.).

5 Conclusion

The results of this study emphasized the insufficiency of participants with schizophrenia in occupational performance in the IADL. The participants´ reports suggest limitations in the functioning of the EF when they bring concrete illustrations of impairment in their elements, which negatively impact the performance of daily activities.

Nevertheless, in this study, we did not find any actions that directly focused the rehabilitation of the EF. On the other hand, in spite of transcending our objectives, we noticed that the Environmental Factors to face difficulties evidenced are consonant with the precepts of Psychosocial Rehabilitation, as well as reveal that this population is inserted and enjoying the available devices. However, we point out that the number of participants in this study is a limiting factor for the generalization of the results.

The reflection on the determinations of daily life contributes to the movements of its re-signification. For people with schizophrenia, this is revealed in the dynamics of self-determination in the face of the changes in their lives. Thus, in addition to the naming and understanding obtained on the multidimensional factors involved in this research, we also sought to contribute with guiding elements for the construction of treatment and rehabilitation programs, not only for skills and competences, but also to the more favorable contexts for its real effectiveness.

Finally, the main contribution of this study was to identify the difficulties related to executive dysfunction and its impact on the daily lives of people with schizophrenia, through the reports of the participants. This evidences the relevance of specific rehabilitation programs for this population, aiming at cognitive and functional improvements, indicating that this area is to have its knowledge deepened by new studies in new contexts, and also be a profitable area for the performance of the Occupational Therapist.

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  • Funding Source

    Research Project funded by the Coordenação de Aperfeiçoamento de Pessoal de Ensino Superior - CAPES. Process BEX n.º 1703137.

Notes

  • 1
    Study approved by the opinion nº 673/2014 of the Ethics Committee of the Higher School of Health Technology of Porto and by the opinion nº 638.793 of the Ethics Committee of the Health Sector of the Federal University of Paraná. Work linked to the Ph.D. research project: “Rehabilitation of the executive functions of people with schizophrenia: proposal of a serious game contextualized in the instrumental activities of daily life” (FPCE -UP).
  • 2
    Discrepancy Theory: According to Williams (1994)WILLIAMS, B. Patient satisfaction: a valid concept? Society of Science Medicine, Oxford, v. 38, n. 4, p. 509-516, 1994. the discrepancy model argues that satisfaction is entirely relative, defined in large part by the perceived discrepancy between patient expectations and real experience.

Publication Dates

  • Publication in this collection
    Apr 2018

History

  • Received
    04 May 2017
  • Reviewed
    06 Sept 2017
  • Accepted
    20 Mar 2018
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