Putting "the broken bits together": A qualitative exploration of the impact of communication changes in dementia.

INTRODUCTION: Communication is an area of health and functioning that is profoundly affected by dementia. While it is known that people living with dementia and their care partners experience disruptions to daily activities and social engagement, detailed knowledge about the lived impact of dementia-related communication changes is lacking. This study sought an in-depth understanding of the lived experience of dementia-related communication changes and the associated impact, needs, and strategies. METHODS: As part of an overarching participatory design study, a qualitative (interpretive description) exploration was undertaken with people living with dementia and their care partners. Data from semi-structured interviews were analysed using thematic analysis. RESULTS: We interviewed 13 people living with dementia and 21 care partners and drew three themes and 10 subthemes from the interviews. The first theme illustrates how dementia changes communication which in turn changes life; the second captures the impact of changes on people living with dementia and care partners emotionally and in the context of relationships; and the third describes some positive and constructive ways of moving forward with dementia-related communication changes. CONCLUSIONS: Interventions to enhance function, participation, and wellbeing for people living with dementia and their care partners need to encompass support for communication changes. There is a need to ensure that people living with dementia feel dignified and respected during communication, and that care partners and inclusive communities are educated, trained, and supported to facilitate communication.

Measuring communication as a core outcome in aphasia trials: Results of the ROMA-2 international core outcome set development meeting.

BACKGROUND: Evidence-based recommendations for a core outcome set (COS; minimum set of outcomes) for aphasia treatment research have been developed (the Research Outcome Measurement in Aphasia-ROMA, COS). Five recommended core outcome constructs: communication, language, quality of life, emotional well-being and patient-reported satisfaction/impact of treatment, were identified through three international consensus studies. Constructs were paired with outcome measurement instruments (OMIs) during an international consensus meeting (ROMA-1). Before the current study (ROMA-2), agreement had not been reached on OMIs for the constructs of communication or patient-reported satisfaction/impact of treatment. AIM: To establish consensus on a communication OMI for inclusion in the ROMA COS. METHODS & PROCEDURES: Research methods were based on recommendations from the Core Outcome Measures in Effectiveness Trials (COMET) Initiative. Participants with expertise in design and conduct of aphasia trials, measurement instrument development/testing and/or communication outcome measurement were recruited through an open call. Before the consensus meeting, participants agreed on a definition of communication, identified appropriate OMIs, extracted their measurement properties and established criteria for their quality assessment. During the consensus meeting they short-listed OMIs and participants without conflicts of interest voted on the two most highly ranked instruments. Consensus was defined a priori as agreement by ≥ 70% of participants. OUTCOMES & RESULTS: In total, 40 researchers from nine countries participated in ROMA-2 (including four facilitators and three-panel members who participated in pre-meeting activities only). A total of 20 OMIs were identified and evaluated. Eight short-listed communication measures were further evaluated for their measurement properties and ranked. Participants in the consensus meeting (n = 33) who did not have conflicts of interest (n = 29) voted on the top two ranked OMIs: The Scenario Test (TST) and the Communication Activities of Daily Living-3 (CADL-3). TST received 72% (n = 21) of 'yes' votes and the CADL-3 received 28% (n = 8) of 'yes' votes. CONCLUSIONS & IMPLICATIONS: Consensus was achieved that TST was the preferred communication OMI for inclusion in the ROMA COS. It is currently available in the original Dutch version and has been adapted into English, German and Greek. Further consideration must be given to the best way to measure communication in people with mild aphasia. Development of a patient-reported measure for satisfaction with/impact of treatment and multilingual versions of all OMIs of the COS is still required. Implementation of the ROMA COS would improve research outcome measurement and the quality, relevance, transparency, replicability and efficiency of aphasia treatment research. WHAT THIS PAPER ADDS: What is already known on this subject International consensus has been reached on five core constructs to be routinely measured in aphasia treatment studies. International consensus has also been established for OMIs for the three constructs of language, quality of life and emotional well-being. Before this study, OMIs for the constructs of communication and patient-reported satisfaction/impact of treatment were not established. What this paper adds to existing knowledge We gained international consensus on an OMI for the construct of communication. TST is recommended for inclusion in the ROMA COS for routine use in aphasia treatment research. What are the potential or actual clinical implications of this work? The ROMA COS recommends OMIs for a minimum set of outcomes for adults with post-stroke aphasia within phases I-IV aphasia treatment research. Although not intended for clinical use, clinicians may employ the instruments of the ROMA COS, considering the quality of their measurement properties. The systematic inclusion of a measure of communication, such as TST, in clinical practice could ultimately support the implementation of research evidence and best practices.

Prognostication in post-stroke aphasia: Perspectives of people with aphasia on receiving information about recovery.

Many people with aphasia (language impairment post-stroke) want to know their prognosis for recovery, yet current understanding of their experience of receiving prognoses is limited. Such insight is necessary to inform clinical practice in formulating and delivering aphasia prognoses, especially given the psycho-emotional distress and secondary adverse effects on recovery associated with conversations about prognosis. We sought an in-depth understanding of the perspectives of people with aphasia in relation to receiving prognoses post-stroke, with the aim of informing an evidence-based approach to aphasia prognostication in clinical practice. Semi-structured interviews, facilitated by communication support strategies, were conducted one-to-one with eight people with aphasia (ranging from mild to very severe) 3-12 months post-stroke. Reflexive thematic analysis was used to analyse the qualitative data, yielding two over-arching themes: (1) How would you know without knowing me?; (2) I need to know, but I don't want to know. Our findings illustrate issues of mistrust within the patient-clinician relationship, and complex emotions relating to hope and post-stroke adjustment. The present insight into the lived experience of receiving aphasia prognoses highlights the need for focused consideration of personal definitions of normalcy, measures for fostering trust, and the role of prognostic uncertainty.

Prognostication in Poststroke Aphasia: Perspectives of Significant Others of People With Aphasia on Receiving Information About Recovery.

PURPOSE: Knowing what to expect poststroke is important for many significant others of people with aphasia, yet an understanding of their perceptions and preferences in receiving prognostic information is limited. This knowledge is needed to inform the formulation and delivery of aphasia prognoses as conversations about prognosis can be harmful or helpful depending on their alignment with key stakeholder perspectives. Our preliminary study sought insight into the perspectives of significant others of people with aphasia on receiving prognostic information, with an aim toward informing evidence-based practice in aphasia prognostication. METHOD: We interviewed seven significant others of people with aphasia, 3-12 months poststroke. The interviews were semistructured, conducted one-to-one, and analyzed qualitatively using reflexive thematic analysis. RESULTS: Five themes were drawn from the interviews: (a) You don't know what you don't know. (b) Having them alive is the best you can ask for. (c) Recovery in the eye of the beholder. (d) Outcomes don't matter unless they help me help them. (e) It's my prognosis too if I'm living with aphasia. CONCLUSIONS: A significant other's prognosis-related perceptions and preferences are products of their poststroke reality and may inadvertently shape that of the person with aphasia. In order to facilitate recovery, prognostication practices need to consider the needs of significant others both as providers of care and as requiring care themselves for their first-hand experiences of third-party disability.

Prognostication in post-stroke aphasia: speech pathologists' clinical insights on formulating and delivering information about recovery.

PURPOSE: For people with post-stroke aphasia, "Will I get better?" is a question often asked, but one that is intellectually and emotionally demanding for speech pathologists to answer. Speech pathologists' formulation and delivery of aphasia prognoses is varied and there is limited evidence for optimising practice. We aimed to understand speech pathologists' clinical experiences, reasoning, and support needs in aphasia prognostication. MATERIALS AND METHODS: Twenty-five Australian speech pathologists working with people with aphasia participated in individual, semi-structured interviews. Their age, level of experience, work setting, and location were maximally varied. Interview responses were analysed qualitatively using thematic analysis. RESULTS: Five themes were drawn from the interviews: (1) prognostic challenges are shared but not voiced; (2) truth is there's no quick fix; (3) recovery is more than words; (4) the power of words; and, (5) prognostic competence is implicit. CONCLUSIONS: Speech pathologists use implicit competencies to formulate and deliver aphasia prognoses. A patient-centred, holistic contextualisation of aphasia recovery may enable realistic, optimistic, and constructive conversations about prognosis. These conversations may have therapeutic potential if prognostic uncertainty, emotional adjustment, and conditional outcomes are carefully addressed. Future research should seek to understand the perceptions and preferences of people with aphasia and their significant others.Implications for RehabilitationAphasia prognostication in clinical practice is complex and nuanced, thus increased clinical and research focus is warranted to ensure key stakeholder needs are met.Conversations about prognosis may be more meaningful to people with aphasia if recovery is conceptualised as encompassing impairment, activity, and participation outcomes.Given the implicit competencies required for prognostication, a structured approach to reflective practice and experience-based training may be beneficial.Conversations about prognosis may have therapeutic value, but further research is needed to explore this potential.

The effect of sleep on novel word learning in healthy adults: A systematic review and meta-analysis.

There is increasing evidence to indicate that sleep plays a role in language acquisition and consolidation; however, there has been substantial variability in methodological approaches used to examine this phenomenon. This systematic review and meta-analysis aimed to investigate the effect of sleep on novel word learning in adults, and explore whether these effects differed by retrieval domain (i.e., recall, recognition, and tests of lexical integration). Twenty-five unique studies met the inclusion criteria for the review, and 42 separate outcome measures were synthesized in the meta-analysis (k = 29 separate between-group comparisons, n = 1,396 participants). The results from the omnibus meta-analysis indicated that sleep was beneficial for novel word learning compared with wakefulness (g = 0.50). Effect sizes differed across the separate domain-specific meta-analyses, with moderate effects for recall (g = 0.57) and recognition memory (g = 0.52), and a small effect for tasks which measured lexical integration (g = 0.39). Overall, the results of this meta-analysis indicate that sleep generally benefits novel word acquisition and consolidation compared with wakefulness across differing retrieval domains. This systematic review highlights the potential for sleep to be used to improve second-language learning in healthy adults, and overall provides further insight into methods to facilitate language development.

Prognostication in post-stroke aphasia: How do speech pathologists formulate and deliver information about recovery?

BACKGROUND: Prognostication is a complex clinical task that involves forming a prediction about recovery and communicating prognostic information to patients and families. In aphasia, recovery is difficult to predict and evidence-based guidance on prognosis delivery is lacking. Questions about aphasia prognosis commonly arise, but it is unknown how speech pathologists formulate and deliver information about expected recovery. An understanding of current practice in prognostication is needed to develop evidence-based guidelines for this process, and is necessary in order to ensure successful future implementation of recommended practice regarding prognosis delivery. AIMS: To identify the factors speech pathologists consider important when responding to questions about aphasia prognosis; to examine how they respond in different scenarios; and to evaluate their current attitudes towards aphasia prognostication. METHODS & PROCEDURES: A total of 54 speech pathologists participated in an online survey featuring hypothetical aphasia prognosis delivery scenarios, short-response questions and ratings. Open responses were analysed thematically. Multiple-choice responses were analysed using descriptive statistics and non-parametric tests. OUTCOMES & RESULTS: Speech pathologists regarded factors relating to the nature and severity of post-stroke deficits, an individual's level of motivation and the availability of social support as most important for forming an aphasia prognosis. When delivering prognostic information, considerations of the recipient's emotional well-being, hope and expectations, and comprehension of information were regarded as most important. Speech pathologists' prognosis responses varied in content and manner of communication. The content of the responses included predictions of recovery and information about various attributes and activities contributing to recovery. Prognostic information was most frequently communicated through qualitative probability expressions, general statements and uncertainty-based expressions. A need for more professional support in aphasia prognostication was indicated. CONCLUSIONS & IMPLICATIONS: There is variation in the way speech pathologists respond to questions about aphasia prognosis, and it is unknown how these conversations affect people with aphasia and their significant others. Further research to understand speech pathologists' clinical reasoning and professional support needs, and the perspectives of people living with aphasia, may help to develop an evidence-based approach to prognostication in aphasia. What this paper adds What is already known on this subject Questions about aphasia prognosis are difficult to answer. Current methods for predicting aphasia recovery are yet to demonstrate the reliability and individual specificity required for clinical application. At present, there is no evidence-based guidance or support for prognosis delivery in aphasia. What this study adds to existing knowledge There is variation in the way speech pathologists predict aphasia recovery, the prognostic information they deliver and the manner in which they communicate prognoses. Current approaches to aphasia prognostication are reliant on experience and professional judgement, and speech pathologists desire more support for undertaking this task. What are the potential or actual clinical implications of this work? Speech pathologists lack a consistent approach to aphasia prognostication and desire more support in this task. The present findings offer insight into clinician attitudes and practice, and provide a direction for future research to establish best-practice guidelines for this complex and demanding area of aphasia management.

White noise facilitates new-word learning from context.

Listening to white noise may facilitate cognitive performance, including new word learning, for some individuals. This study investigated whether auditory white noise facilitates the learning of novel written words from context in healthy young adults. Sixty-nine participants were required to determine the meaning of novel words placed within sentence contexts during a silent reading task. Learning was performed either with or without white noise, and recognition of novel word meanings was tested immediately after learning and after a short delay. Immediate recognition accuracy for learned novel word meanings was higher in the noise group relative to the no noise group, however this effect was no longer evident at the delayed recognition test. These findings suggest that white noise has the capacity to facilitate meaning acquisition from context, however further research is needed to clarify its capacity to improve longer-term retention of meaning.