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1.
Palliat Med ; 38(5): 593-601, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38767240

RESUMO

BACKGROUND: Recommendations state that multidisciplinary team expertise should be utilised for more accurate survival predictions. How the multidisciplinary team discusses prognoses during meetings and how they reference time, is yet to be explored. AIM: To explore how temporality is conveyed in relation to patients' prognoses during hospice multidisciplinary team meetings. DESIGN: Video-recordings of 24 hospice multidisciplinary team meetings were transcribed and analysed using Conversation Analysis. SETTING/PARTICIPANTS: A total of 65 staff participating in multidisciplinary team meetings in a UK hospice from May to December 2021. RESULTS: Team members conveyed temporality in three different ways. (i) Staff stated that a patient was dying as part of the patient's current health status. These formulations did not include a time reference per se but described the patient's current situation (as dying) instead. (ii) Staff used specific time period references where another specific reference had been provided previously that somehow constrained the timeframe. In these cases, the prognosis would conflict with other proposed care plans. (iii) Staff members used unspecific time period references where the reference appeared vague and there was greater uncertainty about when the patient was expected to die. CONCLUSIONS: Unspecific time period references are sufficient for achieving meaningful prognostic talk in multidisciplinary teams. In-depth discussion and accurate prediction of patient prognoses are not deemed a priority nor a necessity of these meetings. Providing precise predictions may be too difficult due to uncertainty and accountability. The lack of staff pursuing more specific time references implies shared knowledge between staff and a context-specific use of prognostic estimates.


Assuntos
Equipe de Assistência ao Paciente , Humanos , Prognóstico , Feminino , Masculino , Reino Unido , Fatores de Tempo , Comunicação Interdisciplinar , Cuidados Paliativos na Terminalidade da Vida/organização & administração , Pessoa de Meia-Idade , Hospitais para Doentes Terminais , Comunicação , Adulto
2.
Health Commun ; : 1-9, 2024 Aug 05.
Artigo em Inglês | MEDLINE | ID: mdl-39099415

RESUMO

Prognostication has been found to be a delicate matter in interactions between palliative care professionals and patients. Studies have investigated how these discussions are managed and how speakers orient to their delicate nature. However, the degree to which prognostication is a delicate matter in discussions between palliative care professionals themselves has yet to be investigated. This study explored how hospice multidisciplinary team (MDT) members oriented to the delicacy of prognostication during their meetings. Video-recordings of 24 hospice MDT meetings were transcribed and analyzed using Conversation Analysis. In-depth analysis of the interactions showed how prognostic discussions were oriented to as delicate. This was displayed through markers such as pauses and self-repair organization including cutting off words and restarts, and through accounts accompanying the prognosis. In this way, it was seen that prognostication was not necessarily straightforward. This was further evidenced when prognostic requests were problematic to respond to. It is noteworthy that prognostic discussions are delicate during hospice MDT meetings. Potential reasons may reach further than the taboo of death and lie within prognostic uncertainty and accountability. Research is warranted to explore what causes this delicacy and whether specific support is needed for hospice staff.

3.
Int J Lang Commun Disord ; 56(1): 116-129, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33350040

RESUMO

BACKGROUND: More than 80% of people living with MND (plwMND) develop difficulties with their speech, affecting communication, self-identity and quality of life. Most plwMND eventually use an augmentative and alternative communication device (AAC) to communicate. Some AAC devices provide a synthesized voice for speech, however these voices are often viewed as impersonal and a factor in AAC acceptance. Voice banking creates an approximation of the person's own voice that can be used in AAC and is argued to go some way to preserve a person's identity when natural voice is lost, but there has been little supporting research. AIMS: To understand what plwMND consider when deciding whether or not to bank their voice, what their expectations are, and the expectations of significant communication partners. METHODS: Semi-structured interviews were undertaken with plwMND who had either decided to bank their voice or had decided not to. Thematic analysis was used to provide a qualitative analysis of the data. PROCEDURES: Participants were an opportunistic sample of plwMND within England recruited via an open advert distributed by the MND Association (MNDA). OUTCOMES AND RESULTS: Twelve plwMND were interviewed with nine significant others. Nine participants had decided to bank their voice and three decided not to. The data suggest 'preserving identity' is the overarching motivation in decision making for voice banking. Participants who decided to voice bank considered it would help to maintain their identity and preserve their social and work networks. Participants deciding not to bank their voice highlighted it could not replace their natural voice or preserve their identity. However, few in either group showed an awareness of how a voice bank is used in AAC, and how communication using AAC is significantly different to natural speech. CONCLUSIONS AND IMPLICATIONS: This research is the first study of its kind to examine the considerations for decision making around voice banking for plwMND. Preserving identity is central to decision making when considering whether or not to voice bank. However, the reality of using AAC and voice banking for communication is poorly understood. Professionals have a role to provide plwMND with more information about voice banking in the wider context of using AAC for communication. It may be that the process of voice banking itself is seen as a positive act for plwMND, independent of how it is used later. Further research with associated professionals and stakeholders is indicated. What this paper adds What is already known on this subject Voice banking creates an approximation of the person.s own voice that can be used in AAC, and is argued to go some way to preserve a person's identity when natural voice is lost. There is significant and growing interest in voice banking from the MND community, but there has been little supporting research. What this study adds This research is the first study of its kind to examine decision making surrounding voice banking. It shows how preserving identity is critically important in how people deal with a diagnosis of MND. For those choosing to voice bank, it is seen as an effective way of preserving their identity, a way of 'fighting back' and giving a positive psychological benefit. Those deciding against voice banking do not believe it could maintain their identity and cannot bring back the natural voice they once had. Clinical implications of this study The reality of using AAC and voice banking for communication may be poorly understood. It would be helpful for professionals to provide information about voice banking as part of a wider discussion about the range of options for communication as the condition progresses. It is important that this includes the opportunity to listen to a voice bank to support understanding of how it is used in a communication device, and how different it sounds to natural speech.


Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Voz , Comunicação , Humanos , Motivação , Qualidade de Vida
4.
Palliat Med ; 34(7): 896-905, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-32233831

RESUMO

BACKGROUND: When patients are likely to die in the coming hours or days, families often want prognostic information. Prognostic uncertainty and a lack of end-of-life communication training make these conversations challenging. AIM: The objective of this study is to understand how clinicians and the relatives/friends of patients at the very end of life manage uncertainty and reference time in prognostic conversations. DESIGN: Conversation analysis of audio-recorded conversations between clinicians and the relatives/friends of hospice inpatients. SETTING/PARTICIPANTS: Experienced palliative care clinicians and relatives/friends of imminently dying hospice inpatients. Twenty-three recorded conversations involved prognostic talk and were included in the analysis. RESULTS: Requests for prognostic information were initiated by families in the majority of conversations. Clinicians responded using categorical time references such as 'days', allowing the provision of prognostic estimates without giving a precise time. Explicit terms such as 'dying' were rare during prognostic discussions. Instead, references to time were understood as relating to prognosis. Relatives displayed their awareness of prognostic uncertainty when requesting prognostic information, providing clinicians with 'permission' to be uncertain. In response, clinicians often stated their uncertainty explicitly, but presented evidence for their prognostic estimates, based on changes to the patient's function previously discussed with the family. CONCLUSION: Prognostic uncertainty was managed collaboratively by clinicians and families. Clinicians were able to provide prognostic estimates while being honest about the related uncertainty, in part because relatives displayed their awareness of uncertainty within their requests. The conversation analytic method identified contributions of both clinicians and families, and identified strategies based on real interactions, which could inform communication training.


Assuntos
Família , Assistência Terminal , Comunicação , Morte , Humanos , Prognóstico , Incerteza
5.
Sociol Health Illn ; 42(5): 1202-1219, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32304241

RESUMO

Callers to telephone helplines often seek advice beyond the authorisation of those staffing the service. On health helplines, this poses a problem to the call-taker. How do they manage the dilemma between, on the one hand, exceeding their competence and authority to give medical advice, and, on the other, leaving the caller unsatisfied with the service? We offer a framework in which to set newly identified practices along with those identified in previous studies. Using a set of calls to a medical helpline run by Parkinson's United Kingdom, we show that the call-taker manages the problem by (i) only suggesting courses of action highly marked for impersonality or contingency (displaying a 'low deontic stance', Stevanovic and Peräkylä 2012), and (ii) limiting the interactional risks of tailoring the advice to callers' personal circumstances. We show how our suggested framework of 'advising without personalising' may guide research into the difficult job of delivering advice where the service provider must observe a limit on what they can say.


Assuntos
Aconselhamento , Linhas Diretas , Processos Grupais , Humanos , Telefone , Reino Unido
6.
Clin Linguist Phon ; 34(10-11): 977-997, 2020 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-31899971

RESUMO

Dysarthria is commonly understood as a motor speech disorder characterized by symptoms that are framed as physiologically or acoustically measurable. The effects of dysarthria on social interaction through conversation have been reported but, in comparison with physical measures, remain relatively unexplored. Other-initiated repair sequences are particularly common in dysarthria-in-interaction, drawing attention to the actions of both participants in managing (un)intelligibility, rather than the behavior(s) of the person with dysarthric speech in isolation. These sequences merit detailed and ongoing investigation as they enable us to understand how dysarthria impacts on conversation and, critically, how participants attempt to manage difficulties when they arise. This study explores the organization of other-initiated repair sequences in a dyad where one participant has severe dysarthria arising from amyotrophic lateral sclerosis (ALS) also known as MND. Two hours of recordings were collected on four dates over a 12-month period with the data presented here from recording two. The evidence shows that the participants were able to resolve their troubles, but it required extensive work to both identify the trouble sources and to unravel the problems to reach a satisfactory understanding. The interactions presented in this paper reveal an important limitation of other initiation of repair. Physical restrictions were seen to play an important part in the dysarthric speaker's ability to position his talk in sequential context and successfully accomplish self-repair; particularly, third-turn repair. The present study has offered a depiction of layered conversational problems that other-initiation of repair may not completely resolve or, in some cases, multiply.


Assuntos
Esclerose Lateral Amiotrófica , Disartria , Esclerose Lateral Amiotrófica/complicações , Disartria/etiologia , Humanos , Inteligibilidade da Fala
7.
Clin Linguist Phon ; 34(10-11): 887-893, 2020 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-32885700

RESUMO

Communication disorders pose various challenges for valid and reliable measurement. Previously, we sketched how the prevailing concepts and measurement practices employed in research and speech pathology practice for communication disorders have framed the real-time accomplishment of co-present communication, and contrasted them with its observable properties. We also proposed that distinctive aspects of communication disorders could be divided into three conceptual/causal frames: microgenetic, synchronic, and enchronic. The enchronic frame aligns with the real-time accomplishment of communication, capturing the ways that cognitive processing and language systems are actually put to use for communication. In this special issue, the contributors explore a core aspect of communication - repair organization - in interactions involving people with communication disorders. Each contribution provides detailed insight into population-specific ways that other-participation in repair (and associated activities) shapes communication in daily life.


Assuntos
Transtornos da Comunicação , Patologia da Fala e Linguagem , Comunicação , Transtornos da Comunicação/terapia , Humanos , Idioma , Terapia da Linguagem
8.
Palliat Med ; 33(8): 926-941, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31184529

RESUMO

BACKGROUND: Effective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished. AIM: To review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life. DESIGN: Qualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research. DATA SOURCES: An electronic database search of CINAHL, MEDLINE, PsycINFO and EMBASE was performed. RESULTS: Thirty-one papers were included. Seven themes were identified: highlighting deterioration; involvement in decision-making, post-decision interactional work, tailoring, honesty and clarity, specific techniques for information delivery and roles of different healthcare professionals. Varied levels of family involvement in decision-making were reported. Healthcare professionals used strategies to aid understanding and collaborative decision-making, such as highlighting the patient's deterioration, referring to patient wishes and tailoring information delivery. Doctors were regarded as responsible for discussing prognosis and decision-making, and nurses for providing individualized care. CONCLUSION: Findings suggest training could provide healthcare professionals with these strategies to improve communication. Interventions such as question prompt lists could help relatives overcome barriers to involvement in decision-making. Further research is needed to understand communication with relatives in different settings and with different healthcare professionals.


Assuntos
Comunicação , Pessoal de Saúde , Relações Profissional-Família , Assistência Terminal , Humanos , Pesquisa Qualitativa
9.
Clin Linguist Phon ; 33(3): 219-236, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-30036100

RESUMO

Human society is organised through communicative interactions between co-present people. Speech pathology (SP) assessment and intervention strategies aim to access these sites of communication in order to facilitate participation in life situations for people with communication disorders. Surprisingly, however, there is no explicit theory of communication underpinning SP practice and research. As a result, the conceptual and practical basis for rigorous, empirical measurement of communication remains limited, which is a significant challenge for professional practice and research. This critical review discusses the prevailing ways that co-present communication has been conceptualised and measured in SP. In particular, we examine how models of health have informed current ideas and measurement practices. We argue that although patently valuable for SP, they are largely incommensurate with the realities of co-present communication. Drawing on current empirical research in Sociology and Linguistics, we specify the properties of real-time co-present communication and discuss their relationship to current SP concepts and measurement practices. We conclude by suggesting directions for conceptual development and empirical research that will draw SP assessment and intervention strategies closer to real-time co-present communication.


Assuntos
Comunicação , Patologia da Fala e Linguagem , Transtornos da Comunicação , Humanos
10.
J Hum Nutr Diet ; 31(5): 634-646, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-29761582

RESUMO

BACKGROUND: The present review aimed to identify what is known about the use of blended diets in gastrostomy fed children and young people (i.e. children and young people refers to those who are aged up to 25 years with special educational needs or a disability in accordance with Part 3 of the Children and Family Act 2014; within the review, the word children is used for simplicity but encompasses young people too) and to identify gaps in the literature on this topic to inform future research and policy. METHODS: A scoping review methodology was used searching the online databases PUBMED, PsychINFO, CINAHL, SCOPUS and AMED, EMBASE for articles that addressed issues pertaining to blended diets. The review identified a broad range of literature, regardless of study design, and described and evaluated the quality, range and nature of research activity related to the use of blenderised diets. RESULTS: Forty-three studies were included in the review. The studies focused on nutrition, equipment, the views of carers and patients, and the views of professionals. Several studies described the lack of evidence regarding pros and cons of blended diets and highlighted the need for further research into the field. CONCLUSIONS: There were gaps in the evidence base regarding the impact of blended diets on the health and well-being of the children who receive them and upon the carers who feed the children. The nutritional impact of blended diets is not fully understood and the knowledge and views of professionals involved in the care of those receiving blended diets varies.


Assuntos
Cuidadores/psicologia , Dieta/métodos , Pessoas com Deficiência/psicologia , Nutrição Enteral/métodos , Gastrostomia/métodos , Adolescente , Adulto , Criança , Pré-Escolar , Dieta/psicologia , Educação Inclusiva , Nutrição Enteral/psicologia , Feminino , Gastrostomia/psicologia , Humanos , Masculino , Adulto Jovem
11.
Int J Lang Commun Disord ; 52(1): 3-9, 2017 01.
Artigo em Inglês | MEDLINE | ID: mdl-27184439

RESUMO

BACKGROUND: The Dysarthria-in-Interaction Profile's potential contribution to the clinical assessment of dysarthria-in-conversation has been outlined in the literature, but its consistency of use across different users has yet to be reported. AIMS: To establish the level of consistency across raters on four different interaction categories. That is, how reliable clinicians are when rating a series of videos. A secondary aim was to investigate the relationship between raters' estimates of dysarthric speech intelligibility and their rating of each dyad's overall interaction. METHODS & PROCEDURES: Ten UK speech and language therapists rated independently a series of 40 video samples featuring people with progressive dysarthria in conversation with family members. An equal number of video samples was selected from a collection of recordings featuring four different types of interactional relationship. OUTCOMES & RESULTS: The results show that practising speech and language therapists can rate consistently, and with a high degree of agreement, a series of everyday conversation videos featuring dyads with progressive dysarthria and presenting at different interaction levels. The results also indicate that speech intelligibility does not predict the level of impairment in the interaction in a systematic way suggesting that conversation contains elements that are not directly related to speech intelligibility. CONCLUSIONS & IMPLICATIONS: Further work is required to establish the clinical functionality of this tool, but the results presented here support the development of this conversation profiling system, particularly for people experiencing significant intelligibility problems but remaining highly interactive/communicative.


Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Comunicação , Disartria/diagnóstico , Disartria/reabilitação , Relações Interpessoais , Avaliação de Processos e Resultados em Cuidados de Saúde , Comportamento Verbal , Adulto , Idoso , Avaliação da Deficiência , Progressão da Doença , Disartria/classificação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inteligibilidade da Fala , Gravação em Vídeo
12.
Int J Lang Commun Disord ; 52(6): 800-815, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-28620998

RESUMO

BACKGROUND: A large number of people who experience a stroke are affected by dysarthria. This may be in isolation or in association with aphasia and/or dysphagia. Despite evidence highlighting the psychological and social impact of having post-stroke dysarthria and a number of clinical guidelines that make recommendations for appropriate management, little is known currently about UK service delivery issues relating to speech and language therapy (SLT) assessment and treatment for this group. Such evidence is necessary in order to plan, develop and research services for people with post-stroke dysarthria. AIMS: To gain an overview of SLT practices in the management of people with dysarthria after stroke in the UK. METHODS & PROCEDURES: SLTs in the UK were asked to complete an online survey addressing referral patterns, caseload profiles, and their assessment and intervention methods for post-stroke dysarthria. In the absence of a national register of clinicians working with people with acquired dysarthria, a snowballing method was used to facilitate participant recruitment. Results were analysed using descriptive statistics. OUTCOMES & RESULTS: A total of 146 SLTs responded. The majority were employed by the National Health Service (NHS). Most patients were referred within 1 week post-stroke. Almost half the respondents did not regularly use formal assessments and the use of instrumentation was rare, including the use of video recording. The focus of therapy for mild, moderate and severe dysarthria did not differ significantly for clinicians. A little under half the respondents endorsed non-verbal oral exercises in rehabilitation. The survey demonstrated some appreciation of the centrality of regular intensive practice to effect change, but this was in a minority. CONCLUSIONS & IMPLICATIONS: Through this research it became clear that basic information regarding post-stroke dysarthria incidence, prevalence and core demographics is currently unavailable. More embedded NHS SLT reporting systems would make a significant contribution to this area. A more in-depth examination is required of the natural history of dysarthria over the months and years following stroke, of SLT practices in relation to post-stroke dysarthria, with investigations to understand more fully the choices SLTs make and how this relates to available evidence to support their clinical decision-making.


Assuntos
Acessibilidade aos Serviços de Saúde/tendências , Terapia da Linguagem/tendências , Fonoterapia/tendências , Fala , Reabilitação do Acidente Vascular Cerebral/tendências , Acidente Vascular Cerebral/terapia , Disartria/diagnóstico , Disartria/epidemiologia , Disartria/psicologia , Disartria/reabilitação , Fidelidade a Diretrizes/tendências , Pesquisas sobre Atenção à Saúde , Necessidades e Demandas de Serviços de Saúde/tendências , Disparidades em Assistência à Saúde/tendências , Humanos , Avaliação das Necessidades/tendências , Guias de Prática Clínica como Assunto , Padrões de Prática Médica/tendências , Medicina Estatal/tendências , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/epidemiologia , Acidente Vascular Cerebral/psicologia , Reino Unido/epidemiologia
13.
Int J Lang Commun Disord ; 52(6): 681-688, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-28421707

RESUMO

BACKGROUND: Following content analyses of the first 30 years of the UK speech and language therapy professional body's journal, this study was conducted to survey the published work of the speech (and language) therapy profession over the last 50 years and trace key changes and themes. AIM: To understand better the development of the UK speech and language therapy profession over the last 50 years. METHODS & PROCEDURES: All volumes of the professional journal of the Royal College of Speech and Language Therapists published between 1966 and 2015 (British Journal of Communication Disorders, European Journal of Communication Disorders and International Journal of Language and Communication Disorders) were examined using content analysis. The content was compared with that of the same journal as it appeared from 1935 to 1965. OUTCOMES & RESULTS: The journal has shown a trend towards more multi-authored and international papers, and a formalization of research methodologies. The volume of papers has increased considerably. Topic areas have expanded, but retain many of the areas of study found in earlier issues of the journal. CONCLUSIONS & IMPLICATIONS: The journal and its articles reflect the growing complexity of conditions being researched by speech and language therapists and their professional colleagues and give an indication of the developing evidence base for intervention and the diverse routes which speech and language therapy practice has taken over the last 50 years.


Assuntos
Pesquisa Biomédica , Terapia da Linguagem , Publicações Periódicas como Assunto , Fonoterapia , Patologia da Fala e Linguagem , Autoria , Bibliometria , Pesquisa Biomédica/história , Pesquisa Biomédica/tendências , Difusão de Inovações , Previsões , História do Século XX , História do Século XXI , Humanos , Disseminação de Informação , Cooperação Internacional , Terapia da Linguagem/história , Terapia da Linguagem/tendências , Publicações Periódicas como Assunto/história , Publicações Periódicas como Assunto/tendências , Fonoterapia/história , Fonoterapia/tendências , Patologia da Fala e Linguagem/história , Patologia da Fala e Linguagem/tendências
14.
Int J Palliat Nurs ; 23(11): 543-551, 2017 Nov 02.
Artigo em Inglês | MEDLINE | ID: mdl-29172889

RESUMO

AIM: Speech and language therapists (SLTs) provide intervention for communication and swallowing to patients with life-limiting conditions, such as dementia and head and neck cancer. The role of the SLT in palliative care is difficult to define. Much is known about the clinical aspects of this role; however, little is known about the core values, beliefs and expectations of SLTs working in this sector, particularly with regard to their role in supporting patients' communication. Through a series of semi-structured interviews and a follow-up focus group, this report aimed to form a picture of the experiences and views of SLTs about their communication role in palliative care. Results suggest that SLTs are forging a self-identity in a sector that is itself constantly evolving, which causes difficulties in defining their role. Participants report that other health professionals have a poor understanding of the SLT's role. SLTs may benefit from palliative care-specific guidelines and increased interprofessional awareness of their role in order to become better integrated into the palliative care sector.


Assuntos
Barreiras de Comunicação , Conhecimentos, Atitudes e Prática em Saúde , Equipe de Assistência ao Paciente , Distúrbios da Fala/enfermagem , Fonoterapia , Demência/enfermagem , Grupos Focais , Neoplasias de Cabeça e Pescoço/enfermagem , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Entrevistas como Assunto , Medicina Estatal , Reino Unido
16.
Int J Lang Commun Disord ; 49(6): 710-21, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24934292

RESUMO

BACKGROUND: It is known that dysarthria arising from Parkinson's disease may affect intelligibility in conversational interaction. Research has also shown that Parkinson's disease may affect cognition and cause word-retrieval difficulties and pragmatic problems in the use of language. However, it is not known whether or how these problems become manifest in everyday conversations or how conversation partners handle such problems. AIMS: To describe the pragmatic problems related to the use of words that occur in everyday conversational interaction in dyads including an individual with Parkinson's disease, and to explore how interactants in conversation handle the problems to re-establish mutual understanding. METHODS & PROCEDURES: Twelve video-recorded everyday conversations involving three couples where one of the individuals had Parkinson's disease were included in the study. All instances of other-initiated repair following a contribution from the people with Parkinson's disease were analysed. Those instances involving a trouble source relating to the use of words were analysed with a qualitative interaction analysis based on the principles of conversation analysis. OUTCOMES & RESULTS: In 70% of the instances of other-initiated repair the trouble source could be related to the semantic content produced by the individual with Parkinson's disease. The problematic contributions were typically characterized by more or less explicit symptoms of word search or use of atypical wording. The conversation partners completed the repair work collaboratively, but typically the non-impaired individual made a rephrasing or provided a suggestion for what the intended meaning had been. CONCLUSIONS & IMPLICATIONS: In clinical work with people with Parkinson's disease and their conversation partners it is important to establish what type of trouble sources occur in conversations in a specific dyad. It may often be necessary to look beyond intelligibility and into aspects of pragmatics to understand more fully the impact of Parkinson's disease on everyday conversational interaction.


Assuntos
Anomia/terapia , Transtornos da Comunicação/terapia , Disartria/terapia , Relações Interpessoais , Doença de Parkinson/terapia , Semântica , Comportamento Verbal , Vocabulário , Idoso , Anomia/diagnóstico , Anomia/psicologia , Transtornos da Comunicação/diagnóstico , Transtornos da Comunicação/psicologia , Compreensão , Comportamento Cooperativo , Disartria/diagnóstico , Disartria/psicologia , Feminino , Humanos , Masculino , Inteligibilidade da Fala , Cônjuges
17.
Augment Altern Commun ; 29(1): 54-67, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23521352

RESUMO

The aim of this study was to examine the use and practices of handwriting-in-interaction by people with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND). Handwriting has previously been described as a viable and practical means of augmentative and alternative communication, particularly for adults with acquired progressive dysarthria and intact upper limb control. To date, however, there is extremely limited evidence documenting how handwriting is used within a conversational context. The analysis in this paper features data from two people with ALS/MND in conversation at home with their spouses. It is shown how recipient animation of an authored written contribution is an important element of handwriting-in-interaction, particularly in how the recipient reveals his or her stance or reaction to whatever has been written.


Assuntos
Esclerose Lateral Amiotrófica/fisiopatologia , Comunicação , Disartria/fisiopatologia , Escrita Manual , Adulto , Família , Feminino , Humanos , Masculino , Índice de Gravidade de Doença , Inquéritos e Questionários
18.
Augment Altern Commun ; 29(1): 37-53, 2013 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-23521351

RESUMO

Managing the exchange of speakers from one person to another effectively is a key issue for participants in everyday conversational interaction. Speakers use a range of resources to indicate, in advance, when their turn will come to an end, and listeners attend to such signals in order to know when they might legitimately speak. Using the principles and findings from conversation analysis, this paper examines features of speaker transfer in a conversation between a boy with cerebral palsy who has been provided with a voice-output communication aid (VOCA), and a peer without physical or communication difficulties. Specifically, the analysis focuses on turn exchange, where a VOCA-mediated contribution approach completion, and the child without communication needs is due to speak next.


Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência/psicologia , Comunicação , Disartria/psicologia , Relações Interpessoais , Grupo Associado , Comportamento Verbal , Paralisia Cerebral , Criança , Humanos , Masculino , Gravação em Vídeo
19.
Disabil Rehabil Assist Technol ; 18(7): 1043-1055, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-34511007

RESUMO

BACKGROUND: More than 80% of people living with Amyotrophic Lateral Sclerosis (plwALS) develop difficulties with their speech, affecting communication, self-identity and quality of life. Automatic speech recognition technology (ASR) is becoming a common way to interact with a broad range of devices, to find information and control the environment.ASR can be problematic for people with acquired neurogenic motor speech difficulties (dysarthria). Given that the field is rapidly developing, a scoping review is warranted. AIMS: This study undertakes a scoping review on the use of ASR technology by plwALS and identifies research gaps in the existing literature. MATERIALS AND METHODS: Electronic databases and relevant grey literature were searched from 1990 to 2020. Eleven research papers and articles were identified that included participants living with ALS using ASR technology. Relevant data were extracted from the included sources, and a narrative summary of the findings presented.Outcomes and Results: Eleven publications used recordings of plwALS to assess word recognition rate (WRR) word error rate (WER) or phoneme error rate (PER) and appropriacy of responses by ASR devices. All were found to be linked to severity of dysarthria and the ASR technology used. One article examined how speech modification may improve ASR accuracy. The final article completed thematic analysis of Amazon.com reviews for the Amazon Echo and plwALS were reported to use ASR devices to control the environment and summon assistance. CONCLUSIONS: There are gaps in the evidence base: understanding expectations of plwALS and how they use ASR technology; how WER/PER/WRR relates to usability; how ASR use changes as ALS progresses.Implications for rehabilitationDevices that people can interact with using speech are becoming ubiquitous. As movement and mobility are likely to be affected by ALS and progress over time, speech interaction could be very helpful for accessing information and environmental control.However, many people living with ALS (plwALS) also have impaired speech (dysarthria) and experience trouble using voice interaction technology because it may not understand them.Although advances in automated speech recognition (ASR) technology promise better understanding of dysarthric speech, future research needs to investigate how plwALS use ASR, how accurate it needs to be to be functionally useful, and how useful it may be over time as the disease progresses.


Assuntos
Esclerose Lateral Amiotrófica , Percepção da Fala , Humanos , Fala , Disartria/etiologia , Esclerose Lateral Amiotrófica/complicações , Interface para o Reconhecimento da Fala , Qualidade de Vida , Distúrbios da Fala
20.
JMIR Res Protoc ; 12: e41416, 2023 Feb 03.
Artigo em Inglês | MEDLINE | ID: mdl-36735301

RESUMO

BACKGROUND: Parkinson's can impact people's speech, cognition, pragmatics, and language, significantly affecting their conversations with others. The speech and language therapy approach called communication partner training (CPT) is effective for a range of communication difficulties. However, speech and language therapy interventions for people with Parkinson's predominantly focus on impairments, with little provision of CPT for this population. Better Conversations is a CPT approach that involves working with a dyad (the person with the communication difficulty and a conversation partner [CP]) to build conversation skills. It is effective at reducing barriers to conversation, and for some, it significantly increases targeted facilitatory strategies. Some approaches to CPT have been adapted to be delivered via telehealth. This can maximize ecological validity and convenience. Furthermore, telehealth is widely accepted as a delivery method for other interventions for Parkinson's. This study presents the protocol for a pilot feasibility study of a Better Conversations CPT delivered via telehealth to people living with Parkinson's and their CPs, called Better Conversations with Parkinson's (BCP). OBJECTIVE: The primary aim is to evaluate the feasibility of the BCP program delivered via telehealth with a treatment group from a collaborating National Health Service (NHS) site to establish for a main trial whether BCP can be delivered as intended in an NHS setting. The aim is to establish: (1) the acceptability of the program for people living with Parkinson's, family members, and speech and language therapists (SLTs); (2) the feasibility of delivering the BCP program; (3) the recruitment and retention rates; (4) a sample size calculation; and (5) the most appropriate primary outcome measure. METHODS: Ethical approval for this study was obtained from London-Central Research Ethics Committee (reference: 22/LO/0332). This case-series feasibility pilot study will recruit 10-12 dyads to ensure 10 complete data sets. Participants will be recruited by a collaborating NHS site located in England. Participants will be involved for 16 weeks (weeks 1-2 preintervention measures, weeks 3-8 intervention, weeks 10-12 postintervention measures, week 16 follow-up interview). Quantitative and qualitative methods will be used to analyze the study data. Speech, communication, and quality of life assessment data will be analyzed statistically to determine a suitably sensitive outcome measure. Descriptive statistics will be used to report on recruitment, attendance, and attrition. Finally, acceptability and feasibility will be evaluated using participant feedback, interviews, and the reflective diary and feedback of the SLT administering the therapy (by the research assistant who is the first author). This data will be analyzed using descriptive statistics and reflexive thematic analysis. RESULTS: This study was approved for funding from Parkinson's UK. Study recruitment commenced in July 2022. The results of the data analysis are expected to be available by September 2024. CONCLUSIONS: Insights from this study will provide valuable information about the acceptability and feasibility of a remotely delivered Better Conversations CPT approach for people living with Parkinson's and their CPs. An outcome of this study will be a manualized BCP program coproduced by people living with Parkinson's, their families, and a group of expert SLTs. The study results will guide the next stages of intervention development. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/41416.

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