Communication strategies for adults in palliative care: the speech-language therapists' perspective.

BACKGROUND: Communication disorders are a challenge that many patients in palliative care (PC) may encounter. This intervention area is emerging for the speech-language therapist (SLT), the professional who works in preventing, assessing, diagnosing, and treating human communication disorders. This study aims to identify and classify the communication strategies considered most important by SLTs for use in PC and evaluate whether there are any differences in perception regarding the importance of strategies between SLTs with and without PC experience. METHODS: This cross-sectional quantitative study was conducted using a survey, which employed a well-structured, self-completion questionnaire previously validated by a panel of experts with over six years of PC experience. RESULTS: The strategies rated as most important within each group were the following: (i) adjust the patient's position and minimise environmental noise; (ii) establish eye contact and adjust the pace of speech; (iii) adjust the language level and raise one topic at a time; (iv) use images of the patient's interests and their personal objects; (v) use orality and multimodal form; (vi) use simplified language and structured pauses; and (vii) use tables with images and books with pictures. CONCLUSIONS: Verbal and non-verbal strategies were rated as highly important. There was no evidence of differences in perception in terms of importance between the SLTs with or without experience in PC, but more studies are needed to support this aspect. The patient's communication ability is one of the cornerstones of PC quality. Through their actions, speech-language professionals could empower the patient with strategies so that they can autonomously and self-determinedly express their experiences and most significant needs.

Dysphagia in Alzheimer's disease: a systematic review / A disfagia na Doença de Alzheimer: uma revisão sistemática

ABSTRACT Dysphagia is described as a highly relevant comorbidity of Alzheimer's disease (AD). However, there is a scarcity of studies aiming at the characteristics and progression of dysphagia. Objective: The objective of this study was to identify the specific characteristics, progression, and prevalence of dysphagia in AD. Methods: Publications were searched in the PubMed (MEDLINE), EBSCO, ScienceDirect, and BASE databases. Critical appraisal and evidence-level analysis were conducted using the Joanna Briggs Institute and Effective Public Health Practice Project's (EPHPP) tools. Results: A total of 26 studies were reviewed. Symptoms begin in the early stage of AD, as oral phase impairments, and progress to pharyngeal symptoms and swallowing apraxia in the later stages of AD. Dysphagia progresses, as AD, along a continuum, with severity depending on individual variability. There were no studies found on prevalence. Conclusions: Dysphagia is a complex and important comorbidity in AD that impacts the quality of life. No recent publications on prevalence may imply that is not being coded as a potential cause for pneumonia deaths in AD.

RESUMO A disfagia é uma comorbidade relevante da doença de Alzheimer (DA). No entanto, existem poucos estudos sobre as suas características e progressão. Objetivo: Identificar as características específicas, a progressão e a prevalência da disfagia na DA. Métodos: Pesquisa conduzida nas bases PubMed (Medical Literature Analysis and Retrieval System Online — MEDLINE), EBSCO, ScienceDirect e BASE. Avaliação crítica e análise do nível de evidência foram conduzidas usando as ferramentas do Joanna Briggs Institute e do Effective Public Health Practice Project (EPHPP). Resultados: Incluíram-se 26 estudos. Os sintomas iniciam-se no estádio inicial da DA, como alterações de fase oral, progredindo para alterações faríngeas e apraxia de deglutição no estádio grave. A disfagia progride, como a DA, num continuum, com a gravidade dependendo da variabilidade individual. Não foram encontrados estudos de prevalência. Conclusões: A disfagia é uma comorbidade complexa e importante que tem impacto na qualidade de vida. A escassez de publicações atuais de prevalência pode indicar que não é considerada como potencial causa de morte por pneumonia na DA.

Dysphagia in Alzheimer's disease: a systematic review.

Dysphagia is described as a highly relevant comorbidity of Alzheimer's disease (AD). However, there is a scarcity of studies aiming at the characteristics and progression of dysphagia. OBJECTIVE: The objective of this study was to identify the specific characteristics, progression, and prevalence of dysphagia in AD. METHODS: Publications were searched in the PubMed (MEDLINE), EBSCO, ScienceDirect, and BASE databases. Critical appraisal and evidence-level analysis were conducted using the Joanna Briggs Institute and Effective Public Health Practice Project's (EPHPP) tools. RESULTS: A total of 26 studies were reviewed. Symptoms begin in the early stage of AD, as oral phase impairments, and progress to pharyngeal symptoms and swallowing apraxia in the later stages of AD. Dysphagia progresses, as AD, along a continuum, with severity depending on individual variability. There were no studies found on prevalence. CONCLUSIONS: Dysphagia is a complex and important comorbidity in AD that impacts the quality of life. No recent publications on prevalence may imply that is not being coded as a potential cause for pneumonia deaths in AD.

A disfagia é uma comorbidade relevante da doença de Alzheimer (DA). No entanto, existem poucos estudos sobre as suas características e progressão. Objetivo: Identificar as características específicas, a progressão e a prevalência da disfagia na DA. Métodos: Pesquisa conduzida nas bases PubMed (Medical Literature Analysis and Retrieval System Online ­ MEDLINE), EBSCO, ScienceDirect e BASE. Avaliação crítica e análise do nível de evidência foram conduzidas usando as ferramentas do Joanna Briggs Institute e do Effective Public Health Practice Project (EPHPP). Resultados: Incluíram-se 26 estudos. Os sintomas iniciam-se no estádio inicial da DA, como alterações de fase oral, progredindo para alterações faríngeas e apraxia de deglutição no estádio grave. A disfagia progride, como a DA, num continuum, com a gravidade dependendo da variabilidade individual. Não foram encontrados estudos de prevalência. Conclusões: A disfagia é uma comorbidade complexa e importante que tem impacto na qualidade de vida. A escassez de publicações atuais de prevalência pode indicar que não é considerada como potencial causa de morte por pneumonia na DA.

Práticas de investigação do Terapeuta da Fala em Portugal: Necessidades, barreiras e facilitadores / Research practices of the Speech-Language Pathologist in Portugal: Needs, barriers and facilitators / Prácticas de investigación del Fonoaudiólogo en Portugal: necesidades, barreras y facilitadores

Introdução: A necessidade e o interesse na investigação pelos Terapeutas da Fala (TFs) tem sido crescente. Objetivos: (i) caracterizar o nível de autonomia atual dos TFs em Portugal em investigação científica; (ii) caracterizar o nível de autonomia desejado dos TFs em Portugal em investigação científica; (iii) caracterizar as necessidades de formação assim como identificar as barreiras e facilitadores de práticas de investigação dos TFs em Portugal. Métodos: 86 TFs preencheram um questionário validado por um painel de peritos. A recolha de dados incidiu sobre: (i) nível de autonomia atual e desejado para a prática de investigação; (ii) barreiras e facilitadores inerentes à prática da investigação. Resultados: Os níveis de autonomia foram significativamente inferiores aos níveis desejados (p<0,001). A autonomia atual para a tarefa de criação de uma ideia de investigação foi significativamente inferior quando comparada com as tarefas de definição de metodologia (p<0,05), análise de dados (p<0,001), processamento de dados (p<0,001) e síntese de resultados (p<0,001). Não houve diferenças de autonomia entre a tarefa de comunicação em conferências e a tarefa de criação de uma ideia de investigação (p<0,05). A maioria reportou a necessidade de formação adicional para conseguir integrar a investigação na sua prática clínica. A principal barreira para a realização de investigação foi a ausência de tempo (64,5%). O principal facilitador foi o tempo disponível (27,7%). Conclusão: Os TFs possuem o desejo de maior autonomia no processo de investigação. A identificação de barreiras e facilitadores encontrados poderão permitir uma resposta mais adequada às capacidades e necessidades dos TFs.

Introduction: Speech-language pathologists' (SLPs) research needs and interests have been increasing over the years. Objectives: (i) characterize the SLPs' current research autonomy level in Portugal; (ii) characterize the SLPs' desired research autonomy level in Portugal; (iii) characterize the SLP's training needs as well as identify barriers and facilitators of the research practice in Portugal. Methods: 86 SLPs completed a questionnaire validated by a panel of experts. The data collection focused on: (i) current and desired research practice autonomy level; (ii) barriers and facilitators inherent to the research practice. Results: The current research autonomy levels were significantly lower than the desired levels (p<0.001). The current autonomy level of conceptualizing a research idea was significantly lower when compared to several tasks, such as defining methodology (p<0.05), data analysis (p<0.001), data processing (p<0.001) and results synthesis (p<0.001). There was no difference in autonomy between a conference communication task and research idea conceptualization task (p>0.05). Most of SLPs reported the need for additional training in order to integrate research into their clinical practice. The main barrier to conducting research was the lack of time (64.5%). The main facilitator suggested was increasing the available time (27.7%). Conclusion: SLPs have the desire to have greater autonomy in the research process. The identification of barriers and facilitators may allow a more adequate response to the research competences and needs of SLPs.

Introducción: La necesidad e interés en la investigación de los Fonoaudiólogos (FAs) está yendo en aumento. Objetivos: caracterizar: (i) el nivel actual de autonomía de los FAs en la investigación científica tomando Portugal como referencia; (ii) el nivel deseado de autonomía de los FAs en Portugal en la investigación científica; (iii) las necesidades de formación, así como barreras y facilitadores de las prácticas de investigación de los FAs en Portugal. Métodos: 86 FAs completaron un cuestionario validado por un panel de expertos. La recopilación de datos se centró en: (i) el nivel de autonomía actual y deseado para la práctica de la investigación; (ii) barreras y facilitadores de la práctica de la investigación. Resultados: Los niveles de autonomía fueron significativamente más bajos que los niveles deseados (p<0,001). La autonomía actual para crear/idear investigación fue significativamente menor en comparación con la de definición de métodos (p<0,05), análisis de datos (p<0,001), procesamiento de datos (p<0,001) y síntesis de resultados (p<0,001). No se encontraron diferencias en la autonomía entre la comunicación en conferencias y crear/idear investigación (p<0,05). La mayoría de FAs informó sobre la necesidad de formación adicional para integrar la investigación en su práctica. La principal barrera investigar fue la falta de tiempo (64,5%). El principal facilitador fue el tiempo disponible (27,7%). Conclusión: los FAs desean más autonomía en la investigación. Las barreras y facilitadores identificadas pueden permitir una respuesta más adecuada a las capacidades y necesidades de los FAs.

Communication of mechanically ventilated patients in intensive care units. / A comunicação dos doentes mecanicamente ventilados em unidades de cuidados intensivos.

OBJECTIVE: The aim of this study was to translate and culturally and linguistically adapt the Ease of Communication Scale and to assess the level of communication difficulties for patients undergoing mechanical ventilation with orotracheal intubation, relating these difficulties to clinical and sociodemographic variables. METHODS: This study had three stages: (1) cultural and linguistic adaptation of the Ease of Communication Scale; (2) preliminary assessment of its psychometric properties; and (3) observational, descriptive-correlational and cross-sectional study, conducted from March to August 2015, based on the Ease of Communication Scale - after extubation answers and clinical and sociodemographic variables of 31 adult patients who were extubated, clinically stable and admitted to five Portuguese intensive care units. RESULTS: Expert analysis showed high agreement on content (100%) and relevance (75%). The pretest scores showed a high acceptability regarding the completion of the instrument and its usefulness. The Ease of Communication Scale showed excellent internal consistency (0.951 Cronbach's alpha). The factor analysis explained approximately 81% of the total variance with two scale components. On average, the patients considered the communication experiences during intubation to be "quite hard" (2.99). No significant correlation was observed between the communication difficulties reported and the studied sociodemographic and clinical variables, except for the clinical variable "number of hours after extubation" (p < 0.05). CONCLUSION: This study translated and adapted the first assessment instrument of communication difficulties for mechanically ventilated patients in intensive care units into European Portuguese. The preliminary scale validation suggested high reliability. Patients undergoing mechanical ventilation reported that communication during intubation was "quite hard", and these communication difficulties apparently existed regardless of the presence of other clinical and/or sociodemographic variables.

A comunicação dos doentes mecanicamente ventilados em unidades de cuidados intensivos / Communication of mechanically ventilated patients in intensive care units

RESUMO Objetivo: Traduzir e adaptar cultural e linguisticamente o instrumento Ease of Communication Scale e determinar o nível de dificuldades de comunicação dos doentes submetidos à ventilação mecânica com entubação orotraqueal, relacionando-o a variáveis clínicas e sociodemográficas. Métodos: Este estudo teve três fases: (1) adaptação cultural e linguística da Ease of Communication Scale; (2) avaliação preliminar de suas propriedades psicométricas; e (3) pesquisa observacional, descritivo-correlacional e transversal, realizada entre março e agosto de 2015, com base nas respostas à Ease of Communication Scale - após a extubação, de 31 doentes adultos, extubados e clinicamente estáveis, admitidos em cinco unidades de cuidados intensivos portuguesas, e em suas variáveis clínicas e sociodemográficas. Resultados: A análise dos peritos revelou elevada concordância em relação ao conteúdo (100%) e à pertinência (75%). O pré-teste obteve elevada aceitabilidade ao nível do preenchimento e da sua utilidade. A Ease of Communication Scale apresentou excelente consistência interna (alfa de Cronbach de 0,951). A análise fatorial explicou cerca de 81% da variância total com duas componentes da escala. Em média, os doentes consideraram as experiências de comunicação, durante a entubação, "muito difíceis" (2,99). Não existiu relação estatisticamente significativa entre as dificuldades de comunicação reportadas e as variáveis sociodemográficas e clínicas estudadas, com exceção da variável clínica "número de horas após a extubação" (p < 0,05). Conclusão: Realizou-se a tradução e a adaptação para o português europeu do primeiro instrumento de avaliação das dificuldades de comunicação dos doentes mecanicamente ventilados nas unidades de cuidados intensivos. A validação preliminar da escala sugeriu elevada fiabilidade. Os doentes submetidos à ventilação mecânica consideraram que as experiências de comunicação durante a entubação foram "muito difíceis" e estas dificuldades de comunicação pareceram existir independentemente da presença de outras variáveis clínicas e/ou sociodemográficas.

ABSTRACT Objective: The aim of this study was to translate and culturally and linguistically adapt the Ease of Communication Scale and to assess the level of communication difficulties for patients undergoing mechanical ventilation with orotracheal intubation, relating these difficulties to clinical and sociodemographic variables. Methods: This study had three stages: (1) cultural and linguistic adaptation of the Ease of Communication Scale; (2) preliminary assessment of its psychometric properties; and (3) observational, descriptive-correlational and cross-sectional study, conducted from March to August 2015, based on the Ease of Communication Scale - after extubation answers and clinical and sociodemographic variables of 31 adult patients who were extubated, clinically stable and admitted to five Portuguese intensive care units. Results: Expert analysis showed high agreement on content (100%) and relevance (75%). The pretest scores showed a high acceptability regarding the completion of the instrument and its usefulness. The Ease of Communication Scale showed excellent internal consistency (0.951 Cronbach's alpha). The factor analysis explained approximately 81% of the total variance with two scale components. On average, the patients considered the communication experiences during intubation to be "quite hard" (2.99). No significant correlation was observed between the communication difficulties reported and the studied sociodemographic and clinical variables, except for the clinical variable "number of hours after extubation" (p < 0.05). Conclusion: This study translated and adapted the first assessment instrument of communication difficulties for mechanically ventilated patients in intensive care units into European Portuguese. The preliminary scale validation suggested high reliability. Patients undergoing mechanical ventilation reported that communication during intubation was "quite hard", and these communication difficulties apparently existed regardless of the presence of other clinical and/or sociodemographic variables.

Action verbal fluency in Parkinson's patients.

We compared the performance of 31 non-demented Parkinson's disease (PD) patients to 61 healthy controls in an action verbal fluency task. Semantic and phonemic fluencies, cognitive impairment and behavioural dysfunction were also assessed. The mean disease duration of PD was 9.8 years (standard deviation (SD) = 6.13). There were no age (U = 899.5, p = 0.616), gender(chi-square = 0.00, p = 1.00) or literacy (U = 956, p = 0.96) differences between the two groups. A significant difference was observed between the two groups in the action verbal fluency task (U = 406.5, p < 0.01) that was not found in the other fluency tasks. The education level was the only biographical variable that influenced the action (verb) fluency outcomes, irrespective of disease duration. Our findings suggest a correlation between the disease mechanisms in PD and a specific verb deficit, support the validity of the action (verb) fluency as an executive function measure and suggest that this task provides unique information not captured with traditional executive function tasks.

Action verbal fluency in Parkinson’s patients / Fluência verbal de ação em pacientes com doença de Parkinson

We compared the performance of 31 non-demented Parkinson´s disease (PD) patients to 61 healthy controls in an action verbal fluency task. Semantic and phonemic fluencies, cognitive impairment and behavioural dysfunction were also assessed. The mean disease duration of PD was 9.8 years (standard deviation (SD) = 6.13). There were no age (U = 899.5, p = 0.616), gender(chi-square = 0.00, p = 1.00) or literacy (U = 956, p = 0.96) differences between the two groups. A significant difference was observed between the two groups in the action verbal fluency task (U = 406.5, p < 0.01) that was not found in the other fluency tasks. The education level was the only biographical variable that influenced the action (verb) fluency outcomes, irrespective of disease duration. Our findings suggest a correlation between the disease mechanisms in PD and a specific verb deficit, support the validity of the action (verb) fluency as an executive function measure and suggest that this task provides unique information not captured with traditional executive function tasks.

Este estudo comparou o desempenho em provas de fluência verbal semântica, fonêmica e de ação, em 31 pacientes com doença de Parkinson (DP), sem demência, e 61 controlos saudáveis. As funções executivas e comportamentais foram igualmente avaliadas. O tempo de evolução foi de 9,8 anos (DP = 6,13). Não foram encontradas diferenças de idade (U = 899,5, p = 0,616), género (X2 = 0,00, p = 1,00) ou literacia (U = 956, p = 0,96) entre os dois grupos. Diferenças significativas foram encontradas na prova de fluência verbal de ação (U = 406,5, p < 0,01) que não se verificaram nas restantes provas. O nível educacional foi a única variável biográfica que influenciou o desempenho das tarefas, independentemente do tempo de evolução da doença. Os resultados sugerem uma correlação entre os mecanismos patológicos da DP e um déficit específico para a evocação de verbos e que a prova de fluência de ação providencia uma informação importante que não é detectada pelos restantes testes executivos.

Tradução portuguesa e análise de aspectos psicométricos da escala "Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39)" / Portuguese translation and psychometric properties of the Portuguese version of the Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39)

OBJETIVO: Efetuar a tradução e analisar os aspectos psicométricos da adaptação portuguesa da Stroke and Aphasia Quality of Life Scale-39 (SAQOL-39). Essa escala possui quatro domínios (Físico, Psicossocial, Comunicação e Energia) e foi criada especificamente para pacientes com afasia. MÉTODOS: Foi realizada a tradução e retroversão, a partir da escala original. A versão portuguesa foi aplicada em 33 pacientes com afasia. A avaliação da consistência interna foi obtida através do Alfa de Cronbach e foi efetuado um teste-reteste em 12 pacientes. Foram igualmente utilizados os coeficientes de Pearson e Spearman, para correlacionar os subdomínios da prova e os diferentes dados clínicos e biográficos. RESULTADOS: A versão portuguesa da SAQOL-39 manteve o mesmo formato da versão original, em tamanho e conteúdo semântico. O Alfa de Cronbach da SAQOL-39 foi 0,953 e variou entre 0,882 (domínio psicossocial) e 0,971 (domínio Físico). Os resultados do teste-reteste, referentes à SAQOL-39, foram de 0,927 e variaram de 0,80 a 0,97, entre os diferentes subdomínios. Não se verificou efeito de teto e não houve dados omissos. Não foram encontradas diferenças significativas entre o total da SAQOL-39 e a idade, ou a escolaridade. No entanto, evidenciou-se correlação significativa entre o Quociente de Afasia e o subdomínio Comunicação (r=0,62, p=0,000). CONCLUSÃO: Apesar do tamanho reduzido da amostra, a versão portuguesa da SAQOL-39 apresentou bons valores psicométricos. Este estudo mostra, igualmente, dados preliminares de boa aceitabilidade e confiabilidade dessa adaptação e realça a importância da avaliação da qualidade de vida em pacientes com alterações graves de linguagem.

PURPOSE: The main goals of this study were to translate and assess the psychometric properties and reliability of the Portuguese version of the SAQOL-39 in a group of chronic aphasia patients. METHODS: We used the translation and retroversion method from the original scale to ensure conceptual uniformity. The instrument was administered to 33 aphasia patients. Internal consistency was assessed with Cronbach´s alpha and test-retest reliability was explored (n=12). We also used Pearson´s and Spearman´s correlation coefficients to determine the correlations between the SAQOL-39 domains and other social and clinical variables. RESULTS: The translation process from the original scale was completed without difficulties. Cronbach´s alpha for SAQOL-39 was 0.953 and for each subdomain ranged from 0.882 (Psychosocial) to 0.971 (Physical). The test-retest reliability for total SAQOL-39 was 0.927 and for each subdomain ranged from 0.80 to 0.97. The global scores show neither floor nor ceiling effect and there were no missing data. There was no significant association between the total SAQOL-39 score and either age or years of education. We found a significant correlation between the Communication domain mean score and the Aphasia Quotient outcome (r=0.62, p=0.000). CONCLUSION: Despite the small sample size, the Portuguese version of the SAQOL-39 showed good internal consistency and test-retest reliability. This study also showed preliminary evidence for good acceptability, feasibility and reliability of this adaptation. The importance of communication ability in perceiving the quality of life in patients with aphasia has also been highlighted.