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.

Engaging people experiencing communication disability in stroke rehabilitation: a qualitative study.

BACKGROUND: Engagement is commonly considered important in stroke rehabilitation, with some arguing it is essential for positive patient outcomes. An emerging body of research indicates the practitioner influences engagement through their ways of relating, communicating and working with the patient. People experiencing communication disability may face particular challenges with engagement as a practitioner's communication and interactional patterns may limit their ability to engage. AIMS: To understand how rehabilitation practitioners worked to engage people experiencing communication disability throughout the course of rehabilitation. METHODS & PROCEDURES: A qualitative study using the Voice Centred Relational Approach. Longitudinal observational and interview data were gathered from 28 practitioners and three people experiencing communication disability in inpatient and community stroke rehabilitation services. Data were analyzed using the Listening Guide. OUTCOMES & RESULTS: Engagement was a relational practice on the part of the rehabilitation practitioner. It was underpinned by a relational philosophy and characterized by three core processes: embedding relational work throughout rehabilitation; getting to know the patient and working in ways valued by the patient; and communicating using relational dialogue and supported conversation. Practitioners wove these together with their technical, disciplinary-based work and rehabilitation tasks. CONCLUSIONS & IMPLICATIONS: Patient engagement was constructed through relationships and strongly influenced by the practitioners' way of thinking about and enacting practice, challenging the idea that engagement is solely an intrinsic patient state and behaviour. The findings raise questions about which aspects of rehabilitation work and communication are most valuable when working to engage people experiencing communication disability. Viewing engagement as a relational practice and understanding the different ways this is enacted may support practitioners to reflect on their understandings of engagement, their patient's engagement, their ways of working, and the frames and philosophies that surround and influence their practice.

Determinants of Living Well With Aphasia in the First Year Poststroke: A Prospective Cohort Study.

OBJECTIVE: To determine factors that contribute to living well with aphasia in the first 12 months poststroke. DESIGN: Prospective longitudinal cohort study. SETTING: Hospitalized care, ambulatory care, and general community. PARTICIPANTS: A referred sample of people (N=58) with a first incidence of aphasia after stroke was assessed at 3, 6, 9, and 12 months postonset. Participants were recruited through speech-language pathologists in 2 capital cities in Australia. Presence of aphasia was determined through the Western Aphasia Battery-Revised by an experienced speech-language pathologist. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: The main outcomes were the 5 domains of the Assessment for Living with Aphasia at 3, 6, 9, and 12 months poststroke. The independent variables included demographics, physical functioning, social network, mood, aphasia severity, and a self-rating of successfully living with aphasia at the same time points. Mixed effects modeling was used to determine which factors contributed to the trajectory of each of the 5 domains of participation, impairment, environment, personal factors, and life with aphasia. RESULTS: Higher household income, larger social network size, being a woman, and having milder aphasia were positively associated with the participation domain. Graduate or postgraduate educational levels, low mood, and poor physical functioning were negatively associated with the participation domain. Factors positively associated with other domains included higher income, self-ratings of successfully living with aphasia, and aphasia severity. Low mood was consistently negatively associated with all of the domains. CONCLUSIONS: Psychosocial determinants were the most significant predictors of living well with aphasia in the first 12 months postonset. Aphasia rehabilitation needs to attend more to these factors to optimize outcomes.

'I do the best I can': an in-depth exploration of the aphasia management pathway in the acute hospital setting.

PURPOSE: While research has begun to explore the management of aphasia across the continuum of care, to date there is little in-depth, context specific knowledge relating to the speech pathology aphasia management pathway. This research aimed to provide an in-depth understanding of the current aphasia management pathway in the acute hospital setting, from the perspective of speech pathologists. METHOD: Underpinned by a social constructivist paradigm, the researchers implemented an interpretive phenomenological method when conducting in-depth interviews with 14 Australian speech pathologists working in the acute hospital setting. Interview transcripts and interviewer field notes were subjected to a qualitative content analysis. RESULTS: Analysis identified a single guiding construct and five main categories to describe the management of aphasia in the acute hospital setting. The guiding construct, First contact with the profession, informed the entire management pathway. Five additional main categories were identified: Referral processes; Screening and assessment; Therapeutic intervention; Educational and affective counselling; and Advocacy. CONCLUSIONS: Findings suggest significant diversity in the pathways of care for people with aphasia and their families in the acute hospital setting. Additional support mechanisms are required in order to support speech pathologists to minimise the evidence-practice gap. Implications for Rehabilitation Significant diversity exists in the current aphasia management pathway for people with acute post-stroke aphasia and their families in the acute hospital setting. Mechanisms that support speech pathologists to minimise the evidence-practice gap, and consequently reduce their sense of professional dissonance, are required.

The use of interpretive description within Kaupapa Maori research.

Kaupapa Maori research (KMR) is an Indigenous research approach that is decolonizing and transformative. Interpretive description (ID) is a qualitative methodology used to generate knowledge relevant to the applied health disciplines. In this article, we discuss how we combined KMR and ID to investigate the experiences of Maori (the Indigenous peoples of New Zealand) with aphasia and their whanau (extended family). This is novel because it is the first time these two approaches have been combined. In the context of aphasia research, we discuss how they work together in theory, and the synergies that became apparent in practice. We conclude that the combination of KMR and ID enables clinicians and Maori with aphasia to learn from each other and work together, thereby generating knowledge that makes a difference for Maori with aphasia and their whanau.

Maori experiences of aphasia therapy: "But I'm from Hauiti and we've got shags".

This study explored Maori experiences of aphasia therapy, with a view to ascertaining what makes a service culturally safe as well as "accessible to and culturally appropriate for" Maori with aphasia and their whanau (extended family). Maori are the indigenous peoples of New Zealand. This study incorporated interpretive description (a qualitative methodology) within kaupapa Maori research (a Maori approach to research). In-depth semi-structured interviews were undertaken with 11 Maori with aphasia and 23 of their nominated whanau members. They reported a wide variety of experiences of aphasia therapy, in six themes: We're happy to do the work, but we can't do it alone; Relationship; Our worldview; The speech-language therapy setting; Aphasia resources; and Is this as good as it gets? While some Maori with aphasia reportedly received an accessible and culturally appropriate service, others did not. It is concluded that, for Maori with aphasia, a strong therapeutic relationship is central. The success of this relationship is shaped by the SLP's appreciation of the worldview of the person with aphasia and whanau, the setting of the therapy, and the resources used. Successful therapy will involve collaboration between clinician and whanau, and therapy resources that affirm the identity of the person with aphasia.

Intensive comprehensive aphasia programs: an international survey of practice.

BACKGROUND: In response to the need to simultaneously address multiple domains of the International Classification of Functioning, Disability and Health (ICF) in aphasia therapy and to incorporate intensive treatment doses consistent with principles of neuroplasticity, a potentially potent treatment option termed intensive comprehensive aphasia programs (ICAPs) has been developed. OBJECTIVE: To conduct an international survey of ICAPs to determine the extent of their use and to explore current ICAP practices. METHODS: A 32-item online survey was distributed internationally through Survey Monkey between May and August 2012. The survey addressed ICAP staffing, philosophy, values, funding, admission criteria, activities, family involvement, outcome measures, and factors considered important to success. RESULTS: Twelve ICAPs responded: 8 from the United States, 2 from Canada, and 1 each from Australia and the United Kingdom. The majority of ICAPs are affiliated with university programs and are funded through participant self-pay. ICAPs emphasize individualized treatment goals and evidence-based practices, with a focus on applying the principles of neuroplasticity related to repetition and intensity of treatment. On average, 6 people with aphasia attend each ICAP, for 4 days per week for 4 weeks, receiving about 100 hours of individual, group, and computer-based treatment. Speech-language pathologists, students, and volunteers staff the majority of ICAPs. CONCLUSIONS: ICAPs are increasing in number but remain a rare service delivery option. They address the needs of individuals who want access to intensive treatment and are interested in making significant changes to their communication skills and psychosocial well-being in a short period of time. Their efficacy and cost-effectiveness require future investigation.

Clinician perspectives of an intensive comprehensive aphasia program.

BACKGROUND: Intensive comprehensive aphasia programs (ICAPs) have increased in number in recent years in the United States and abroad. OBJECTIVE: To describe the experiences of clinicians working in an ICAP. METHODS: A phenomenological approach was taken. Seven clinicians from 3 ICAPs were interviewed in person or on the phone. Their interviews were transcribed and coded for themes relating to their experiences. RESULTS: Clinicians described 3 major themes. The first theme related to the intensity component of the ICAP that allowed clinicians to provide in-depth treatment and gave them a different perspective with regard to providing treatment and the potential impact on the person with aphasia. The second theme of rewards for the clinicians included learning and support, seeing progress, and developing relationships with their clients and family members. Third, challenges were noted, including the time involved in learning new therapy techniques, patient characteristics such as chronicity of the aphasia, and the difficulty of returning to work in typical clinical settings after having experienced an ICAP. CONCLUSIONS: Although there is a potential for bias with the small sample size, this pilot study gives insight into the clinician perspective of what makes working in an ICAP both worthwhile and challenging.

Setting a research agenda to inform intensive comprehensive aphasia programs.

Research into intensive comprehensive aphasia programs (ICAPs) has yet to show that this service delivery model is efficacious, effective, has cost utility, or can be broadly implemented. This article describes a phased research approach to the study of ICAPs and sets out a research agenda that considers not only the specific issues surrounding ICAPs, but also the phase of the research. Current ICAP research is in the early phases, with dosing and outcome measurement as prime considerations as well as refinement of the best treatment protocol. Later phases of ICAP research are outlined, and the need for larger scale collaborative funded research is recognized. The need for more rapid translation into practice is also acknowledged, and the use of hybrid models of phased research is encouraged within the ICAP research agenda.

"Making a good time": the role of friendship in living successfully with aphasia.

Loss of friendship post-onset of aphasia is well documented, with reduced social network size and social isolation commonly reported. Because friendship has strong links to psychological well-being and health, increased knowledge about friendships of individuals with aphasia will have important clinical implications. This study aimed to explore the perspectives of 25 community dwelling individuals with chronic aphasia on the role of friendship in living successfully with aphasia. Thematic analysis of transcripts from semi-structured in-depth interviews revealed three over-arching themes relating to the role of friendship in participants' experience of life with aphasia: living with changes in friendships, good times together and support from friends, and the importance of stroke and aphasia friends. Overall, findings highlighted the valued role of friendship in living successfully with aphasia, while also providing evidence of how friendships change and evolve in both negative and positive ways following onset of aphasia. Clinicians are challenged to work creatively to address the role of friendship in life post-stroke in partnership with individuals with aphasia, their families, and friends.

The World Report on Disability as a blueprint for international, national, and local aphasia services.

This commentary aims to extend the debate of the lead article authors (Wylie, McAllister, Davidson, and Marshall, 2013) by translating the nine recommendations of the World Report on Disability into a plan of action for the aphasia community. Solutions for the advancement of aphasia science and services are presented at international (macro), national (meso), and local (micro) levels. Implications for speech-language pathologists and aphasia service delivery are discussed. An overarching call to action is the need for speech-language pathologists to support a strong and vibrant aphasia community at all levels, so that the voices of people with aphasia can be heard.

The first 3-months post-stroke: what facilitates successfully living with aphasia?

This study used a qualitative approach to describe the experience of the first 3 months post-stroke in order to identify factors which facilitate successfully living with aphasia. Fifteen participants completed semi-structured interviews and self-perceived ratings of how successfully he or she was living with aphasia. A number of themes were identified from the interviews, including: a need to do things in order to be actively engaged in rehabilitation; increase independence and have a purpose in life; the importance of social support; the value of rehabilitation; a need to adapt and make adjustments; and having a positive outlook. These results suggest that a range of service delivery models need to be considered during the early stages post-stroke in order to address individual needs and so that long-term outcomes of people with aphasia may be improved.

Living successfully with aphasia: a qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists.

The concept of living successfully with aphasia has recently emerged as an alternative to more traditional "deficit" models in aphasiology, encouraging a focus on positive rather than negative outcomes. This research aimed to integrate findings from studies exploring the perspectives of three participant groups (individuals with aphasia, speech-language pathologists, and family members) about living successfully with aphasia. Qualitative meta-analysis of three studies conducted by the authors was used to integrate perspectives across the participant groups. Steps in the qualitative meta-analysis were based on those described in the process of "meta-ethnography" by Noblit and Hare (1988) . Analysis was an inductive process, in which data from each study were re-analysed and translated into each other in order to identify higher-level overarching themes that accounted for similarities and discrepancies across the original studies. A total of seven overarching themes related to living successfully with aphasia were identified. These were: participation, meaningful relationships, support, communication, positivity, independence and autonomy, and living successfully with aphasia as a journey over time. Findings indicate the need for a holistic, client-centred approach that considers communication in the broader context of an individual's daily life. The overarching themes may act as guides for areas of importance to be addressed in clinical practice, as well as in future research. By working in partnership with individuals with aphasia and their families, speech-language pathologists are challenged to continue to improve services and assist clients on their journey of living successfully with aphasia.

Guiding principles for printed education materials: design preferences of people with aphasia.

The objectives of this study were to obtain the preferences of people with aphasia for the design of stroke and aphasia printed education materials (PEMs) and to compare these preferences with recommendations in the literature for developing written information for other populations. A face-to-face quantitative questionnaire was completed with 40 adults with aphasia post-stroke. The questionnaire explored preferences for: (1) the representation of numbers, (2) font size and type, (3) line spacing, (4) document length, and (5) graphic type. Most preferences (62.4%, n = 146) were for numbers expressed as figures rather than words. The largest proportion of participants selected 14 point (28.2%, n = 11) and Verdana ref (33.3%, n = 13) as the easiest font size and type to read, and a preference for 1.5 line spacing (41.0%, n = 16) was identified. Preference for document length was not related to the participant's reading ability or aphasia severity. Most participants (95.0%, n = 38) considered graphics to be helpful, with photographs more frequently reported as a helpful graphic type. The identified preferences support many of the formatting recommendations found within the literature. This research provides guiding principles for developing PEMs in preferred formats for people with aphasia.

Aphasia friendly written health information: content and design characteristics.

People with aphasia need communicatively accessible written health information. Healthcare providers require knowledge of how to develop printed education materials (PEMs) in formats that people with aphasia prefer and can read. This study aimed to explore formatting characteristics considered to be barriers and facilitators to reading PEMs. Semi-structured in-depth interviews were conducted with 40 adults with aphasia who were selected using maximum variation sampling across aphasia severity, reading ability, and time post-stroke. Participants were shown stroke and aphasia PEMs obtained from the recruiting stroke services, asked to rank them from most liked to least liked, and comment on factors that made the PEMs easier and harder to read. The majority of participants ranked the aphasia friendly stroke (56.4%, n = 22) and aphasia (87.2%, n = 34) PEMs as most liked. Forty-five facilitator and 46 barrier codes were identified using qualitative content analysis and grouped into two categories; (1) content characteristics and (2) design characteristics. Findings support many of the recommendations found within the literature for developing best practice PEMs and accessible information for other patient groups. Routine consideration of the facilitators and barriers identified will contribute to making written information more accessible to people with aphasia.

Identifying age-friendly behaviours for bus driver age-awareness training.

BACKGROUND: Occupational therapists may be involved in advocating for age-friendly bus systems and training bus drivers in age-awareness. In order to develop evidence-based bus driver age-awareness training programs, the specific required bus driver behaviours should be explicated. PURPOSE: This study aims to define, clarify, and illustrate behaviours associated with bus driver friendliness and helpfulness. METHODS: Forty older people (aged 60 and over) in Queensland, Australia, completed a round trip bus journey and subsequent interview. Qualitative content analysis of participant observations with stimulated recall interviews was used to identify categories and themes around friendly and helpful bus drivers. FINDINGS: General professional behaviours included making older people feel safe, courtesy, friendliness, helpfulness and being aware of invisible disabilities and specific professional behaviours included giving time, pulling in close to the curb, communication, and information. IMPLICATIONS: The findings are incorporated into suggestions for a bus driver age-awareness training program.

The number of patients with communication related impairments in acute hospital stroke units.

Effective communication between patients who have had a stroke and their healthcare providers is vital. However, this may be difficult if patients have communication related impairments as a result of the stroke and/or have age related impairments that impact on their ability to communicate. This study sought to identify how many patients admitted into two acute hospital stroke units had a hearing, vision, speech, language and/or cognitive communicative impairment regardless of the cause. A total of 69 patients participated in this study. The majority (88%) of patients had one or more mild or more severe communication related impairments, 69% of patients had two or more communication related impairments and 39% of patients had three or more communication related impairments. The most common type of impairment was hearing impairment, followed by near vision impairment. That a high number of patients in acute hospital stroke units have communication related impairments suggests that many patients in acute stroke units may experience difficulty communicating their healthcare needs with healthcare providers and that alternative ways to support patients with communication related impairments in acute stroke units need to be available.