Exploring changing needs following minor stroke.

Medical advances have led to many of the severe consequences of stroke being averted. Consequently, more people are being discharged from hospital following treatment for what is classed as minor stroke. The needs of people with minor stroke have received little research attention. The aim of the current study was to conduct an exploratory prospective needs analysis to document the unmet health, rehabilitation and psychosocial needs of a recently hospitalised minor stroke cohort approximately 2 weeks (T1) and 2 months (T2) post-hospital discharge. An exploratory cohort design was used to explore the unmet health, service and social needs of 20 patients with minor stroke. Participants completed questionnaires (Survey of Unmet Needs and Service Use, Mayo-Portland Adaptability Inventory-4, Exeter Identity Transition Scales, RAND 36-Item Health Survey 1.0) at T1 and T2. Nine participants reported unmet needs at T1 and seven participants reported unmet needs at T2. Between T1 and T2, there was a significant improvement in perceived role limitations due to physical health. Participation in society was significantly better at T2. In conclusion, patients with minor stroke report health, service and social needs that are unmet by existing services. This patient cohort urgently requires co-ordinated services to detect and manage these unmet needs.

The seven habits of highly effective aphasia therapists: The perspective of people living with aphasia.

Purpose: Influential value-driven approaches to aphasia rehabilitation have been proposed previously, but have emphasised how service providers need to deliver their services. The aim of this article is to extract a set of values or habits that define effective aphasia therapists, from a 16-year programme of research that has sought to capture the perspectives of people with aphasia, their family and speech-language pathologists. Method: The findings of 58 studies published by members of our team which have sought the views of people with aphasia (38 studies), speech-language pathologists (11 studies) and family members (5 studies), and those which compared all stakeholder's perspectives (2 studies), were synthesised into seven themes. Presented as habits, these were subsequently described in the same manner as the popular "Seven Habits of Highly Effective People". Result: The seven habits of highly effective aphasia therapists described by people with aphasia and their family were (1) Prioritise relationships; (2) Find a rope team; (3) Begin with the end in mind; (4) Practise SMARTER therapy; (5) Leave no person behind; (6) Look behind the mask and (7) Find a voice. Conclusion: While there are similarities to other value-based approaches to aphasia rehabilitation, these seven habits are detailed using our published research that has privileged the voices of people with aphasia. The seven habits therefore reflect what people with aphasia view as the features of highly effective aphasia therapists. The next steps are to identify how to evaluate evidence-based practices in these areas and ensure their implementation into practice. Effective aphasia therapists are at the heart of effective aphasia rehabilitation.

Individualised active communication education (I-ACE): another clinical option for adults with hearing impairment with a focus on problem solving and self-management.

Objective: This clinical note describes the Individualised - Active Communication Education (I-ACE) programme designed to improve problem solving and self-management in adults with hearing impairment. Design: The I-ACE was offered to adult clients seeking help for the first time and effects were measured for participants using self-report questionnaires: the Client Oriented Scale of Improvement (goal attainment), the Hearing Handicap Questionnaire (hearing disability), and the International Outcome Inventory - Alternative Interventions (outcomes) immediately after programme completion and 3 months later. Participants also provided qualitative feedback about I-ACE. Study sample: Twenty-three participants completed I-ACE, with 22 completing all self-report questionnaires and 23 participants providing qualitative feedback. Results: The participants reported positive outcomes and goal attainment, but no change in hearing disability post-programme. The effects were maintained 3 months later. Qualitative feedback indicated that I-ACE supported participants in recognising and increasing awareness of their hearing difficulties and in developing potential solutions to these difficulties. Participants also enjoyed the opportunity to involve communication partners. Conclusion: I-ACE is an appropriate option for adults with hearing impairment who wish to become more aware of their hearing difficulties and how to solve them.

Reducing the psychosocial impact of aphasia on mood and quality of life in people with aphasia and the impact of caregiving in family members through the Aphasia Action Success Knowledge (Aphasia ASK) program: study protocol for a randomized controlled trial.

BACKGROUND: People with aphasia and their family members are at high risk of experiencing post stroke depression. The impact of early interventions on mood and quality of life for people with aphasia is unknown. METHODS/DESIGN: This study will determine whether an early intervention for both the person with aphasia after stroke and their family members leads to better mood and quality of life outcomes for people with aphasia, and less caregiver burden and better mental health for their family members. This is a multicenter, cluster-randomized controlled trial. Clusters, which are represented by Health Service Districts, will be randomized to the experimental intervention (Aphasia Action Success Knowledge Program) or an attention control (Secondary Stroke Prevention Information Program). People with aphasia and their family members will be blinded to the study design and treatment allocation (that is, will not know there are two arms to the study). Both arms of the study will receive usual care in addition to either the experimental or the attention control intervention. A total of 344 people with aphasia and their family members will be recruited. Considering a cluster size of 20, the required sample size can be achieved from 18 clusters. However, 20 clusters will be recruited to account for the potential of cluster attrition during the study. Primary outcome measures will be mood and quality of life of people with aphasia at 12 months post stroke. Secondary measures will be family member outcomes assessing the impact of caregiving and mental health, and self-reported stroke risk-related behaviors of people with aphasia. DISCUSSION: This is the first known program tailored for people with aphasia and their family members that aims to prevent depression in people with aphasia by providing intervention early after the stroke. TRIAL REGISTRATION: This trial is registered in the Australian New Zealand Clinical Trials Registry (ANZCTR) as ACTRN12614000979651 . Date registered: 11 September 2014.

'That doesn't translate': the role of evidence-based practice in disempowering speech pathologists in acute aphasia management.

BACKGROUND: An evidence-practice gap has been identified in current acute aphasia management practice, with the provision of services to people with aphasia in the acute hospital widely considered in the literature to be inconsistent with best-practice recommendations. The reasons for this evidence-practice gap are unclear; however, speech pathologists practising in this setting have articulated a sense of dissonance regarding their limited service provision to this population. A clearer understanding of why this evidence-practice gap exists is essential in order to support and promote evidence-based approaches to the care of people with aphasia in acute care settings. AIMS: To provide an understanding of speech pathologists' conceptualization of evidence-based practice for acute post-stroke aphasia, and its implementation. METHODS & PROCEDURES: This study adopted a phenomenological approach, underpinned by a social constructivist paradigm. In-depth interviews were conducted with 14 Australian speech pathologists, recruited using a purposive sampling technique. An inductive thematic analysis of the data was undertaken. OUTCOMES & RESULTS: A single, overarching theme emerged from the data. Speech pathologists demonstrated a sense of disempowerment as a result of their relationship with evidence-based practice for acute aphasia management. Three subthemes contributed to this theme. The first described a restricted conceptualization of evidence-based practice. The second revealed speech pathologists' strained relationships with the research literature. The third elucidated a sense of professional unease over their perceived inability to enact evidence-based clinical recommendations, despite their desire to do so. CONCLUSIONS & IMPLICATIONS: Speech pathologists identified a current knowledge-practice gap in their management of aphasia in acute hospital settings. Speech pathologists place significant emphasis on the research evidence; however, their engagement with the research is limited, in part because it is perceived to lack clinical utility. A sense of professional dissonance arises from the conflict between a desire to provide best practice and the perceived barriers to implementing evidence-based recommendations clinically, resulting in evidence-based practice becoming a disempowering concept for some.

Neuroscientific Implications in Assessment and Intervention for Aphasia.

Within an overarching theme of generational change in aphasiology, the aims of this paper are to (a) unify the neuroscience of the language impairment of aphasia with the psychosocial science of aphasia, (b) consider the implications of technology and (c) address the global challenge of translational research in this field. To achieve the first two aims, 10 principles of neuroplasticity will be interpreted within the World Health Organization's International Classification of Functioning, Disability and Health (ICF). Two novel treatment approaches to aphasia (UQ Aphasia LIFT and CommFit™) will be described that illustrate how the neuroplasticity principles can be interpreted more broadly within the ICF. The global challenge of translational research will bring the perspective of clinicians and consumers through to aphasia research via 3 recent sets of best practice statements for aphasia. Each demonstrates how the field of aphasiology is undertaking a knowledge synthesis within its broader remit of knowledge transfer and exchange. The Australian Aphasia Rehabilitation Pathway is described as a way of creating living clinical guidelines that are helpful to all stakeholders in aphasia research.

Speech-language pathologists' contribution to the assessment of decision-making capacity in aphasia: a survey of common practices.

Speech-language pathologists' scope of practice is currently unclear in relation to their contribution to the multi-disciplinary assessment of decision-making capacity for clients with aphasia and related neurogenic communication disorders. The primary aim of the current research study was to investigate the common practices of speech-language pathologists involved in assessments of decision-making capacity. The study was completed through the use of an online survey. There were 51 of 59 respondents who indicated involvement in evaluations of decision-making. Involvement in this kind of assessment was most commonly reported by speech-language pathologists working in inpatient acute and rehabilitation settings. Respondents reported using a variety of formal and informal assessment methods in their contributions to capacity assessment. Discussion with multidisciplinary team members was reported to have the greatest influence on their recommendations. Speech-language pathologists reported that they were dissatisfied with current protocols for capacity assessments in their workplace and indicated they would benefit from further education and training in this area. The findings of this study are discussed in light of their implications for speech-language pathology practice.

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.

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.

Stroke patients communicating their healthcare needs in hospital: a study within the ICF framework.

BACKGROUND: Previous research has identified that many patients admitted into acute hospital stroke units have communication-related impairments such as hearing, vision, speech, language and/or cognitive communicative impairment. However, no research has identified how many patients in acute hospital stroke units have difficulty actually communicating their healthcare needs. The World Health Organization's International Classification of Functioning, Disability and Health (ICF) conceptualizes difficulty communicating about healthcare needs as a type of activity limitation, within the Activity and Participation component. The ICF proposes that activity limitation can be measured in four different ways. AIMS: The first aim of this research was to measure a patient's difficulty communicating his or her healthcare needs, that is, activity limitation, in two of the four ways suggested by the ICF when interacting with healthcare providers. The second aim was to investigate whether communication-related impairments in hearing, vision, speech, language and/or cognitive communicative impairment predict difficulty communicating healthcare needs, measured in these ways. METHODS & PROCEDURES: A total of 65 patients consecutively admitted into two acute hospital stroke units in Melbourne, Australia, who consented to this research participated in this study. Early in their admission participants were screened for hearing, vision, speech, language and cognitive communicative impairment. Participants were also assessed for difficulty communicating about healthcare needs in two ways proposed by the ICF: 'capacity with assistance' and 'performance'. Relationships between communication-related impairment and both capacity with assistance and performance were explored through Spearman's correlations and binary logistic regression. OUTCOMES & RESULTS: A total of 87% of patients had one or more communication-related impairments. Half of the patients (51%) had difficulty communicating their healthcare needs when assessed in terms of capacity with assistance. Slightly more patients (55%) were observed to have difficulty communicating their healthcare needs when assessed in terms of performance. More severe vision, speech, language and cognitive communicative impairment were significantly associated with more severe difficulty communicating healthcare needs. CONCLUSIONS & IMPLICATIONS: About half of the stroke patients admitted into acute hospital stroke units had difficulty communicating their healthcare needs. Patients with more severe communication-related impairments had more severe difficulty communicating their healthcare needs. Future research is needed to understand the other factors that influence communication between people with communication disabilities and their healthcare providers in acute hospital settings.

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.

"Well it has to be language-related": speech-language pathologists' goals for people with aphasia and their families.

Goal-setting is considered an essential part of rehabilitation practice and integral to person-centredness. However, people with aphasia are not always satisfied with goal-setting, and speech-language pathologists are concerned about the appropriateness of therapy. Furthermore, family members are often excluded from goal-setting, despite the impact aphasia has on them. The actual goals set by clinicians for clients with aphasia and their family members have not yet been investigated. This study aimed to examine the goals that clinicians set for their clients with aphasia and their family members. Data from in-depth interviews with 34 speech-language pathologists describing 84 goal-setting experiences with people with aphasia were coded into superordinate goals for both groups. Clinicians expressed a wide range of goals for people with aphasia and their family members, relating to communication, coping and participation factors, and education. In addition, evaluation was considered a goal for the clients. There were clients for whom no goals were set, particularly for family members, due to a lack of/limited contact. The goals described broadly addressed all aspects of the International Classification of Functioning, Disability and Health (ICF) and reflected the use of both functional and impairment-based therapeutic approaches; they also emphasize the importance of providing goal-setting options for the family members of these clients.

Nursing the patient with developmental disability in hospital: roles of paid carers.

Our aim in this narrative inquiry was to understand the roles of paid carers supporting adults with developmental disability and complex communication needs in hospital, from the perspectives of 15 paid carers, 15 adults with developmental disability, and 15 hospital nurses. Results demonstrated that paid carers have an important role in supporting the adult with disability, providing information, delivering basic care, and facilitating communication. Stories reflected paid carer volunteerism; lack of orientation of carers and hospital staff to the paid carers' roles; blurred role boundaries between paid carers, family carers, and nurses; and paid carers being uncertain about their own responsibilities for staff and patient safety. New policies and practice guidelines are needed to guide both health and disability services in clarifying paid carer roles and role boundaries, and to enable paid carers and hospital staff to work together effectively on the ward in the care of adults with developmental disability.

Delivery styles and formats for different stroke information topics: patient and carer preferences.

OBJECTIVE: To identify the preferences of patients with stroke and their carers for format and delivery style, of different categories of stroke information, and whether these preferences changed over time. METHODS: A semi-structured questionnaire, designed to explore preferences for four topic categories was administered to 34 acute stroke unit patients and 18 carers prior to discharge and again, 3 months after discharge to 27 of these patients and 16 of these carers. RESULTS: Overall format preferences were a combination of face-to-face, written and telephone for both patients and carers prior to discharge. This combination continued for carers following discharge, while patients preferred face-to-face, written and alternative formats of online and audiovisual at this time. Patients and carers most frequently preferred delivery styles appeared to be a mix of active and passive delivery styles, across all topics. Access to a telephone hotline was a popular delivery style. CONCLUSION: Patient and carer preferences varied, supporting the need to offer a variety of formats and delivery styles at each point of contact. PRACTICE IMPLICATIONS: By focusing on specific formats and delivery styles for different topics, health professionals may maximise the access to, and relevance of, stroke information for patients and their carers.

The "Big 5" and beyond: nurses, paid carers, and adults with developmental disability discuss communication needs in hospital.

Adults with developmental disability and little or no speech need to communicate with nurses in hospital to (a) express physical needs, (b) discuss health, (c) convey intelligence and emotions, (d) connect socially, and (e) control the environment. All stakeholders need access to a variety of communication strategies to support communication of these needs.

Do people with aphasia want written stroke and aphasia information? A verbal survey exploring preferences for when and how to provide stroke and aphasia information.

PURPOSE: Written health information can be better comprehended by people with aphasia if it is provided in an aphasia-friendly format. However, before pursuing research in the area of text-formatting for people with aphasia, it must be determined whether people with aphasia consider it helpful to receive health information in the written media. This study, therefore, aimed to determine the following: whether people with aphasia consider it important to receive written stroke and aphasia information; when people with aphasia prefer to receive this information; and what their preferences are for health information media. METHOD: Surveys were administered in a face-to-face interview with 40 adults with aphasia. Participants were purposefully selected using maximum variation sampling for a variety of variables including aphasia severity, reading ability, and time post stroke. RESULTS: Participants thought it important to receive written information about both stroke and aphasia. They considered it helpful to receive written information at several stages post stroke, particularly from 1 month onwards. The largest proportion (97%) of participants identified 6 months post stroke as the most helpful time to receive this information. Written information was the most preferred media at participants' present time post stroke (M = 39 months; range, 2-178 months). Videos/DVDs were the most preferred media during the 6 months immediately following the stroke. CONCLUSION: Despite reading and language difficulties, participants considered written information to be important, hence people with aphasia should receive written information about both stroke and aphasia. This information should be easily accessible throughout the continuum of care.

Measuring outcomes in people who have had a stroke and their carers: can the telephone be used?

PURPOSE: Telephone interviews may be a cost-effective alternative to administering stroke outcome measures for people who are living in the community following a stroke, but there is a lack of research that has compared the different modes of administering outcome measures. The aim of this study was to determine whether telephone administration of selected stroke outcome measures resulted in significantly different results to face-to-face administration of the same outcome measures. METHOD: Nineteen participants who were taking part in a randomised controlled trial (RCT) evaluating the effectiveness of a postdischarge education and support package for stroke patients and their carers were recruited for this study. Participants had the RCT follow-up outcome measures, at 3 months post discharge, administered by both telephone and face-to-face. Participants were randomised to receive either the telephone or face-to-face administration first and a period of 2 weeks separated the two administrations. Outcome measures were the Knowledge of Stroke Questionnaire, a stroke self-efficacy questionnaire, Hospital Anxiety and Depression Scale, Stroke and Aphasia Quality of Life Scale, and the Caregiver Strain Index. RESULTS: There were no significant differences between scores obtained on any of the outcome measures that were administered by telephone and face-to-face (P > .05). CONCLUSION: The telephone can be used to administer the outcome measures that were evaluated in this study to stroke patients and carers. These findings may be of benefit to stroke researchers and clinicians who wish to incorporate the use of telephone measures into the follow-up care of stroke patients and their carers.

Stroke patients' and carers' perception of barriers to accessing stroke information.

PURPOSE: Education is a key component of post stroke care, but patients and carers often report dissatisfaction with information provided. A small number of studies have reported challenges surrounding the provision of information to this population, but patients' perspectives have not been explored in detail. The aim of this study was to identify patients' and carers' perceived barriers to accessing and understanding information about stroke. METHOD: Interviews were conducted with patients and their carers prior to and 3 months following discharge from an acute stroke unit. Transcripts were analysed using qualitative content analysis. RESULTS: The three categories of barriers were identified: (1) limited availability and suitability of information, (2) barriers in the hospital environment, and (3) patient and carer barriers. Three themes were also identified, namely, (1) who is responsible, (2) communication, and (3) not knowing. CONCLUSION: These results have clinical implications for the way in which health professionals coordinate and present stroke information to patients and carers. Addressing these barriers may enhance patients' and carers' access to, understanding of, and satisfaction with information about stroke.

Factors influencing rehabilitation decisions of adults with acquired hearing impairment.

Several rehabilitation interventions yielding comparable outcomes are available to adults with acquired hearing impairment. However, the reasons why people choose particular interventions and not others have not been systematically investigated. This study explored the factors influencing the rehabilitation decisions of adults with acquired hearing impairment. Four options (hearing aids, group communication program, individual communication program, and no intervention) were discussed using shared decision making with 153 adults with acquired hearing impairment who had not previously received hearing rehabilitation. A selected sub-sample of 22 participants described the factors that influenced their decision during a semi-structured interview. Using qualitative content analysis, seven categories of factors influencing rehabilitation decisions were identified: (1) convenience; (2) expected adherence and outcomes; (3) financial costs; (4) hearing disability; (5) nature of intervention; (6) other people's experiences, recommendations, and support; and (7) preventive and interim solution. All categories of factors were a positive influence for a particular intervention for some participants and a negative influence for the same intervention for other participants. The results support a client-centred approach to decision making.

The ICF and third-party disability: its application to spouses of older people with hearing impairment.

PURPOSE: Third-party disability is defined as the disability of family members due to the health condition of their significant other and was identified as a direction for future development by the World Health Organization in 2001. The aim of this article is to identify the International Classification of Functioning, Disability and Health (ICF) domains and categories that describe third-party disability of spouses of older people with hearing impairment. METHOD: Ten spouses of older people with hearing impairment participated in individual semi-structured in-depth interviews. Themes identified by participants were linked according to ICF instructions to deliver a set of ICF category codes relevant to the study of third-party disability in spouses of older people with hearing impairment. RESULTS: A total of 18 themes and 50 sub-themes emerged from analysis of the interviews. The majority of these themes were able to be linked to the ICF, with the majority linking to codes in the activities and participation component. A number of contextual factors also emerged in the interviews that impacted on the spouses' third-party disability. Difficulties arose when attempting to link themes to the body function component. CONCLUSIONS: The ICF appears to be a useful tool in describing the effects of hearing impairment on the significant other; however, further research is necessary to clarify the applicability of some codes to third-party disability, especially the relevance of body functions to third-party disability.