Orientador: Regina Yu Shon Chun / Dissertação (mestrado) - Universidade Estadual de Campinas, Faculdade de Ciências Médicas / Made available in DSpace on 2018-08-17T18:44:27Z (GMT). No. of bitstreams: 1 DiGiulio_RafaelaMarques_M.pdf: 1132136 bytes, checksum: c7ecacdc23c99838a12fbf1e78c299bc (MD5) Previous issue date: 2011 / Resumo: INTRODUÇÃO: O acidente vascular cerebral (AVC) representa a terceira causa de morte em países industrializados. Além de alta incidência, a sequela mais comum de AVC é a afasia, o que traz sérios impactos sobre a qualidade de vida dos indivíduos. Os comprometimentos lingüístico-cognitivos e psíquicos repercutem nas relações entre a pessoa com afasia e seus familiares, geram a demanda de cuidados diferenciados e implicam a participação de um cuidador, geralmente um dos membros familiares. No âmbito da Fonoaudiologia, existem poucos estudos voltados aos cuidadores e/ou familiares na afasia. OBJETIVOS: investigar o impacto da afasia no cuidar de sujeitos afásicos fluentes e não-fluentes bem como nas relações de comunicação entre eles e seus cuidadores e/ou familiares. Esse estudo também procura verificar como a atuação fonoaudiológica, na ótica dos cuidadores e/ou familiares, pode contribuir para o processo de comunicação. SUJEITOS E MÉTODO: Participaram da pesquisa 18 cuidadores e/ou familiares de pessoas afásicas participantes de um Centro de Convivência de Afásicos do Instituto de Estudos da Linguagem/UNICAMP e do Grupo Fonoaudiológico de Comunicação Suplementar e/ou Alternativa do CEPRE/FCM - UNICAMP. Para a coleta de dados foram realizados quatro grupos focais (com uma média de três a sete integrantes), conduzidos pela pesquisadora. Os encontros foram gravados em vídeo e transcritos. Além disso, foram realizadas leituras do material, utilizando-se os critérios de repetição e de relevância para estabelecimento das categorias de análise. Foram estabelecidos dois grandes eixos temáticos para análise, o impacto da afasia (i) no processo de cuidar e (ii) nas relações de comunicação entre os sujeitos afásicos e seus familiares/cuidadores. RESULTADOS: Os resultados evidenciam o impacto que a afasia causa para o próprio indivíduo e para o seu cuidador e/ou familiar, com influências nas relações entre eles e repercussão no dia-a-dia da dinâmica familiar. Embora essa situação traga conseqüências para toda a família, comumente, o cuidado principal é assumido por um único familiar, geralmente cônjuges e filhos, o que gera mudanças no dia-a-dia dos cuidadores, com sobrecargas física e emocional, capazes de alterar sua qualidade de vida. Em relação à linguagem, verifica-se que a dificuldade em se expressar faz com que o cuidador, algumas vezes, exclua a pessoa afásica de conversas. Observa-se também que foram estabelecidas entre os afásicos e seus cuidadores e/ou familiares formas próprias de comunicação, sendo a CSA um recurso que se mostrou um importante instrumento para o favorecimento da linguagem do sujeito afásico. CONCLUSÃO: Os achados evidenciam que a dificuldade de linguagem afeta as relações sociais entre o sujeito e sua família/cuidador. Ademais, os resultados reiteram a necessidade de espaços que promovam momentos de escuta e acolhimento das demandas dos familiares, bem como salientam a importância da atuação fonoaudiológica com esse grupo / Abstract: INTRODUCTION: The cerebral vascular accident (AVC) is the third cause of death in industrialized countries. Besides its high incidence, the most prevalent sequel of AVC is aphasia, an acquired communication disorder that impairs a person?s ability to process language. Linguistic-cognitive impairments and psychological impacts on the relationships between the individual with aphasia and his family (the focus of this study) generate a need for special care, which involves the participation of a caregiver, usually a family member. From the perspective of Speech, Language and Hearing Science, few studies have focused on caregivers and family members in the treatment of aphasia. OBJECTIVES: To analyze the impacts of aphasia on the care process of patients (non-fluent and fluent), and to identify the impacts of aphasia on the communication between these patients and their caregivers and/or family members. This study also seeks to verify how the Speech-Language Pathology can contribute in the communication process from the perspective of caregivers and/or family members. SUBJECTS AND METHOD: Eighteen caregivers and/or family members of aphasic patients participated in this study. They are involved with Aphasia Center (CCA) of Institute of Language Studies (IEL-UNICAMP) and the group of Speech-Language Pathology of Augmentative and Alternative Communication (AAC) - (CEPRE/ FCM - UNICAMP). To collect the data we carried out four focus groups (with an average of three to seven members) led by the researcher. The meetings were videotaped and transcribed. In addition, there were readings of the material, using the criteria of repetition and relevance to establish the categories of analysis. We established two major themes for analysis: (i) the impact of aphasia on the care process and (ii) the impact of aphasia on the communication between the aphasic patients and their caregivers/family members. RESULTS: The results show that aphasia brings serious impacts on the relations between patients and their caregivers and/or families, which influence their routine and family dynamics. We also observed that even though the impacts of aphasia brings consequences for the whole family, usually the main care is assumed by a single member (spouses and daughters/sons), which generates changes in caregivers? routine with physical and emotional consequences, affecting their quality of life. Considering some difficulties of communication and comprehension, we observe that caregivers/family members, in general, exclude aphasic patients of meetings and regular conversations. We also observed that aphasic patients have tried to establish their own forms of communication. In these cases, it is common that the patients adopt the Augmentative and Alternative Communication (AAC), which is an important instrument for facilitating the language of individuals with aphasia. CONCLUSION: These findings highlight how difficulties of language can affect social relations between individuals with aphasia and their families/caregivers. Moreover, the results confirm the need for aphasia groups and aphasia centers, which can provide moments to listen to and embrace the demands of families of aphasic patients. The results also emphasize the important role of the Speech-Language Pathology practice with these all individuals, which can help reconnect persons with aphasia to their family members, and bring positive repercussions not only for the patients but also for those who are responsible for their care process / Mestrado / Saude, Interdisciplinaridade e Reabilitação / Mestre em Saúde, Interdisciplinaridade e Reabilitação

The body of work contained in this dissertation consists of seven studies investigating conversational skills in people with aphasia (PWA). The predominant focus is on establishing reliable measures of language skills in unstructured conversation in PWA. Overall, ten measures are investigated, and much of the work is concerned with establishing interrater reliability and test-retest stability. These measures are needed to determine generalization of aphasia intervention to conversation, to inform treatment decision-making, and to develop future interventions that have the capacity to improve language abilities at a conversation-level. The initial work focused on microlinguistic skills (i.e., word and sentence-level language; Leaman & Edmonds, 2019a; 2019c), and then evolved to include macrolinguistic skills (discourse-level language) with a focus on global coherence (Leaman & Edmonds, in press) and topic initiation (Leaman & Edmonds, 2020). In addition, questions emerged regarding: a) the relationship of language production in monologue and in conversation (due to the predominance of monologue testing, as opposed to conversation, in clinical environments; b) normative data for the measures in monologue and in conversation; c) the sensitivity of the measures as treatment outcome measures. Research questions regarding items a and b are addressed in the novel research conducted for the dissertation (reported in the last two manuscripts in this document, i.e., Dissertation Studies 1 and 2 (DS1 and DS2)), and item c is addressed in Obermeyer et al., (in press). In addition, a related outcome of this research is a methodology, The Conversation Collection Protocol (CCP). The CCP was developed to consistently collect unstructured conversations that would have similar interactional features that could be used as language samples. The protocol is based on conversational interactions in typical speakers, and is primarily informed by the Conversation Analysis literature (for an overview see Schegloff, 2007). The CPP was piloted to train SLP conversation partners to use typical, familiar, social, adult-style interactions during the conversations (rather than traditional therapy or instructional behaviors) in the first study (Leaman & Edmonds, 2019a). The protocol was further developed prior to data collection for the dissertation studies. In this development phase, the systemized training protocol was expanded to include excerpted readings from literature regarding conversational interaction, and a post-training quiz for the partners. In addition, a session fidelity protocol was developed and implemented. Use of the CCP in all of the studies contributed to achieving similarity in the SLP partners’ interactional styles across conversational dyads, allowed fostering of social conversations which were desired (i.e., as opposed to interview-style conversations often used in the literature), and promoted the PWA to direct their own communication decisions and topics of discussion which in typical therapy interactions may be drastically limited by the clinician (Simmons-Mackie & Damico, 1999). The CCP resulted in high session fidelity (98-99%) across the 27 SLPs who participated in the two dissertation studies. The CCP training also resulted in a corpus of conversations that are similar in content and complexity (measured by mean length of utterance and type-token ratio), with similar topics and an equitable distribution of topic-initiating utterances between the PWA and the partners (Leaman & Edmonds, 2019a; DS1). This research agenda is motivated by a clinical need and vision for a dramatic shift in aphasia intervention, which moves away from structured, decontextualized therapy tasks and towards use of everyday conversation as the primary vehicle of intervention. Prerequisite to development of such an intervention is development of outcome measures capable of capturing real-world changes in conversation. Without such measures, it is not possible to determine whether treatment has the intended effects on conversation. Because conversation is a complex, multi-modal, and contextually-bound phenomenon, treatment that improves everyday conversation could potentially affect many aspects of communication. Change in conversation can be realized by treatment focused on verbal skills, nonverbal skills, compensatory strategies, participation, and/or partner training, and ideally should combine all of these communication parameters. Currently, measures and scales exist for each of these areas, except for in the area of language ability in conversation. It is this clinical and research gap, the lack of reliable measures to evaluate language in its most commonly used context, conversation, that fuels this line of research. The publications, in press manuscripts, and two manuscripts resulting from the dissertation research are presented in their order of publication. Conclusions, clinical implications, and future directions are presented in each. However, in brief summary, the primary findings of this body of work are: 1. Reliability and Stability of Language in Conversation Measurement of language production skills in PWA can be accomplished with a high-level of reliability and stability for all measures investigated except for: a) the measure of behavioral manifestations of lexical retrieval (LEXoth; Leaman & Edmonds, 2019a); and b) referential cohesion (REF), which demonstrated variability that precluded test-retest stability in two studies (Leaman & Edmonds, 2019a; DS1). The clinical implication is that language in unstructured conversation, for certain measures, is reliable and stable. 2. Language Production Relationships in Monologue and Conversation Language production in monologue does not tend to parallel language production in unstructured conversation, thus performance during monologue therapy tasks cannot reliably predict conversational language production for most measures investigated (DS2). Consequently, language findings based on a monologue task (this research used a story narrative monologue) cannot be extrapolated for understanding of conversational language skills for most of the measures investigated. Thus, if the desired outcome of treatment is impact at a conversation level, evaluation of the effectiveness of the intervention to achieve this aim cannot be estimated with use of a story narrative monologue language sample. Further, development of intervention relevant to language needs in conversation cannot be adequately developed based on a story narrative monologue. Further investigation is needed regarding the relationship between single picture description tasks and conversation in terms of language production skills. 3. Topic Initiation Mechanisms in PWA and Their Partners PWA often use similar mechanisms to alert listeners that a new topic is being initiated as their communication partners without aphasia, such as waiting for an old topic to end, or using a marker like “oh, and by the way…”. In interactions between individuals without communication disorders, these mechanisms are often layered and used simultaneously. However, the findings of this research demonstrate that as aphasia severity increases, individuals use fewer simultaneous mechanisms to introduce topics. In addition, for people with moderate to severe aphasia, the fewer topic initiation mechanisms they use, the less successful they are during their topic initiating utterances (Leaman & Edmonds, 2020). This work provides a broader analysis of topic initiating behaviors in PWA with a larger sample size (n=10) than had been previously available. In addition, it established a needed methodology for locating the beginning and end of topic locations in unstructured conversation. This ability to reliably locate topics within conversation is also key to the subsequent research regarding global coherence in conversation, which depends on analysis of each utterances coherence to the overall topic being discussed (Leaman & Edmonds, in press; DS1). An important clinical implication suggests that explicit teaching PWA to use simultaneous methods of topic initiation may have therapeutic benefit to support a greater level of successfulness when they initiate new topics during conversation. Further, teaching both PWA and their regular partners about mechanisms of topic initiation may facilitate improved awareness of these mechanisms with positive therapeutic effect in conversation. 4. Sensitivity of Linguistic Measures as Post-Treatment Outcomes Evidence of stability and sensitivity of linguistic measures in conversation is provided in an intervention case study (Obermeyer et al., in press). As a case study, this research suggests preliminary evidence that a discourse-level intervention (Attentive Reading and Constrained Summarization -Written) can affect change in conversation, and that measures investigated in the research presented here may be sensitive to such change. 5. Development and Use of the CCP to Train SLPs as Conversation Partners Although not addressed as a research question, the CCP appears to be effective as a systematic method to collect unstructured conversations suitable for language analysis. Further, the CCP training is brief (less than an hour), and a large group of SLPs (27) demonstrated learning and adherence to the protocol, as evidenced by high session fidelity and resulting conversations that are similar in terms of vocabulary use frequency, mean length of utterance, type-token ratio, and even distribution of topic-initiating turns between the PWA and their partners, and similar topical content across the conversations (Leaman & Edmonds, 2019a; DS1). Further, in the dissertation research over 90 conversations were collected using the CCP training (some were not analyzed due to subsequent ineligibility of the participant), and no conversation resembled an interview or traditional didactic therapy interaction. The clinical implication is that SLPs can be efficiently and effectively trained as conversation partners to collect unstructured (social) conversational samples for the purpose of assessment. Next steps in this line of research are detailed in the conclusion of each of the seven articles and manuscripts. In addition, a summary of the findings and future directions based on the entire body of work are included in the Epilogue of this dissertation.

Made available in DSpace on 2017-06-01T18:24:32Z (GMT). No. of bitstreams: 1 dissertacao_angela_aragao.pdf: 2331190 bytes, checksum: 9c2adc94211ed5b096e2a430cc00776d (MD5) Previous issue date: 2008-02-28 / Aphasia is a disease that interferes directly in the communication of the individual, specially the in expressive one. In most cases, when the aphasic is in the process of (re) empowerment, is given more emphasis on the aspect of oral, leaving aside the writing. However, communication consists of two ways, and therefore it is interesting development work aimed also to write. It is noted that in some cases, the writing, is so poor as to oral and it is necessary to include it in the therapeutic process. Thus, the study of textual production, in written form, using the different genres textual, had intended to observe the changes that aphasia carries on writing of the subject affected by this pathology, in addition to providing a new therapeutic approach in the process of afásico. To do so, participated in this search 04 subject bearers of aphasia that are part of the Workshop on Writing Group's Convivência of the Catholic University of Pernambuco (UNICAP), which aims to address the issues and work related to the written language. The analysis of the qualitative data was, as this study is proposed to observe the production textual the aphasic before textual different genres, and so identify what kind textual more applicant and produced more easily by the bearer of aphasia. After analysis of the data collected has been that afásicos showed ease in producing textual genres linked to concrete situations, as opposed to production of the genera needing achieve a relationship with abstract situations. Thus, it is important that fonoaudiólogos, admit a posture functional instead of organicista, enabling the distancing of tests, focusing uses descontextualizados of language, which exclude the heterogeneous and subjective aspects of the language. Therefore, the (re) Empowerment of aphasia should allow the afásicos use practices of writing that only the written genres can provide, since this attitude shows itself as a path for the fruitful work therapeutic fonoaudiológico / alterações que a afasia acarreta na escrita do sujeito acometido por esta patologia, além de proporcionar uma nova abordagem no processo terapêutico do afásico. Para tanto, participaram desta pesquisa 04 sujeitos portadores de afasia que fazem parte da Oficina de Escrita do Grupo de Convivência da Universidade Católica de Pernambuco (UNICAP), a qual tem como finalidade abordar e trabalhar os aspectos relacionados à linguagem escrita. A análise dos dados foi qualitativa, uma vez que este estudo se propôs a observar a produção textual do afásico diante de diferentes gêneros textuais, e assim identificar qual o gênero textual mais recorrente e produzido com maior facilidade pelo portador de afasia. Após a análise dos dados coletados, foi possível observar que os afásicos apresentaram facilidade em produzir gêneros textuais ligados a situações concretas, em contraposição à produção dos gêneros que necessitaram realizar uma relação com situações abstratas. Deste modo, é importante que os fonoaudiólogos admitam uma postura funcional ao invés da organicista, possibilitando o distanciamento dos testes que focalizam usos descontextualizados da linguagem, os quais excluem os aspectos subjetivos e heterogêneos da linguagem. Portanto, a (re)habilitação da afasia deve permitir que os afásicos utilizem práticas de escrita que só os gêneros escritos podem proporcionar, uma vez que esta postura mostra-se como um caminho frutífero para o trabalho terapêutico fonoaudiológico