Tanya Rose

The effectiveness of aphasia‐friendly principles for printed health education materials for people with aphasia following stroke

Background: Provision of health information to people with aphasia is inadequate. Current practice in providing printed health education materials to people with aphasia does not routinely take into consideration their language and associated reading difficulties. Aims: This study aimed to investigate if people with aphasia can comprehend health information contained in printed health education materials and if the application of aphasia‐friendly principles is effective in assisting them to comprehend health information. It was hypothesised that participants with aphasia would comprehend significantly more information from aphasia‐friendly materials than from existing materials. Other aims included investigating if the effectiveness of the aphasia‐friendly principles is related to aphasia severity, if people with aphasia are more confident in responding to health information questions after they have read the aphasia‐friendly material, if they prefer to read the aphasia‐friendly brochures, and if they prefer to read the brochure type that resulted in the greatest increase in their knowledge. Methods & Procedures: Twelve participants with mild to moderately severe aphasia were matched according to their reading abilities. A pre and post experimental design was employed with repeated measures ANOVA (p <. 05) used to investigate the effectiveness of the aphasia‐friendly principles. Outcomes & Results: While participants with aphasia comprehended health information from the existing printed education materials, participants comprehended 11.2% more information from materials that had an aphasia‐friendly format. No significant correlation between aphasia severity and aphasia‐friendly effectiveness was found. Participants were more confident in answering questions after they had read the aphasia‐friendly brochures. A clear preference for aphasia‐friendly brochures was not found and participants did not consistently select the brochure type that resulted in the greatest increase in their health knowledge. Conclusions: This preliminary investigation has found that aphasia‐friendly material does assist people with aphasia to comprehend health information. The benefits of providing aphasia‐friendly information have many clinical applications that extend beyond the provision of health information. The application of aphasia‐friendly principles to all written materials could prove beneficial in removing some of the barriers people with aphasia face in trying to comprehend written materials. In addition, this research has highlighted that a greater understanding of people with aphasias reactions to aphasia‐friendly materials and also the social impact of providing aphasia‐friendly information is required. Future research, that incorporates a qualitative research approach, will add valuable insight to these topics.

Speech-language pathology services for people with aphasia: A survey of current practice in Australia

Currently, there is limited information on the nature and extent of speech-language pathology services in Australia for people with aphasia. This article reports on a survey to investigate speech-language pathology practice in Australia. An aim of the research was to identify and describe current practice in relation to the International Classification of Functioning, Disability and Health. Furthermore, the frequency, duration and types of services for people with aphasia, including the clinical approaches to intervention, are reported in the context of national clinical guidelines and evidence-based practice. Survey results from 70 respondents revealed that the provision of intensive speech-language pathology intervention for people with aphasia is most common in the inpatient rehabilitation setting. Individual therapy is provided more than any other type of intervention across the continuum of care. The majority of clinicians reported a functional approach to intervention for aphasia; however, the use of impairment-based assessments was predominantly recorded. The widespread use of the Australian Therapy Outcome Measures (AusTOMs), was an indication that the ICF framework informs outcome measurement in 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.

Access to written information for people with aphasia

Background : Accessibility is often constructed in terms of physical accessibility. There has been little research into how the environment can accommodate the communicative limitations of people with aphasia. Communication accessibility for people with aphasia is conceptualised in this paper within the World Health Organisations International Classification of Functioning, Disability and Health (ICF). The focus of accessibility is considered in terms of the relationship between the environment and the person with the disability. Aims : This paper synthesises the results of three studies that examine the effectiveness of aphasia-friendly written material. Main Contribution : The first study (Rose, Worrall, & McKenna, 2003) found that aphasia-friendly formatting of written health information improves comprehension by people with aphasia, but not everyone prefers aphasia-friendly formatting. Brennan, Worrall, and McKenna (in press) found that the aphasia-friendly strategy of augmenting text with pictures, particularly ClipArt and Internet images, may be distracting rather than helpful. Finally, Egan, Worrall, and Oxenham (2004) found that the use of an aphasia-friendly written training manual was instrumental in assisting people with aphasia to learn the Internet. Conclusion : Aphasia-friendly formatting appears to improve the accessibility of written material for people with aphasia. Caution is needed when considering the use of illustrations, particularly ClipArt and Internet images, when creating aphasia-friendly materials. A research, practice, and policy agenda for introducing aphasia-friendly formatting is proposed.

The provision of health information to stroke patients within an acute hospital setting: What actually happens and how do patients feel about it?

Abstract This preliminary study describes how health information is provided to stroke patients in an acute hospital and describes their perceptions of health information provision. A further aim was to determine if patients with aphasia were disadvantaged in their receipt of information. Seven stroke patients were observed in hospital for an average of 102 minutes each and then interviewed using a semi-structured interview. When communication occurred, only 17.5% of communication time was spent providing information. Patients with aphasia received information for less time and on fewer topics. Implications regarding approaches to information provision for patients with and without aphasia are discussed.

Measuring outcomes in aphasia research: A review of current practice and an agenda for standardisation

Background: Aphasia treatment research lacks a uniform approach to outcome measurement. A wide range of outcome instruments are used across trials and there is a lack of research evidence exploring the outcomes most important to stakeholders. This lack of standardisation produces research outcomes that are difficult to compare and combine, limiting the potential to strengthen treatment evidence through meta-analysis and data pooling. The current heterogeneity in aphasia treatment research outcome measurement may be addressed through the development of a core outcome set (COS)—an agreed standardised set of outcomes for use in treatment trials. Aims: This article aims to provide a rationale and agenda for the development of a COS for aphasia treatment research. Main Contribution: A review of the literature reveals heterogeneity in the way outcome measurement is performed in aphasia treatment research. COSs have been developed in a wide range of health fields to introduce standardisation to research outcome measurement. Potential benefits of COSs include easier comparison and combination of research outcomes, improved quality of systematic reviews and greater transparency in research reporting. The use of broad stakeholder consultation also supports the development of research outcomes that are meaningful. It is proposed that a COS for aphasia treatment research could be developed in three stages. First, consensus-based techniques would be used to reach international agreement on the outcomes that are most important to stakeholders. Second, a systematic review and meta-analysis of outcome instruments would provide synthesised evidence to support the choice of tools to most effectively capture the effects of aphasia treatments. Third, final agreement on a COS would be sought through an international consensus conference. Conclusions: There is an identified need for standardisation in the way outcomes are selected and measured in aphasia treatment research. COS development may provide an effective, consensus-based solution to this need.

Developing an evidence‐base for accessibility for people with aphasia

Background: Discrimination on the basis of disability is prohibited in many countries and therefore research on communication accessibility for people with aphasia has become a priority. Aims: The aim of this paper is to summarise and discuss the results of a series of research studies, carried out in one Centre, into accessibility issues for people with aphasia, focusing on the accessibility of community environments and the accessibility of information. Main Contribution: When asked about the accessibility of the community generally, people with aphasia reported both physical and societal barriers and facilitators, as well as barriers and facilitators related to other people. Many people with aphasia still do not receive written health information about aphasia and, when they do, the information is often written at a level too high for them to read. In terms of the accessibility of written information on websites about aphasia, high‐quality websites may not be easily accessible to people with aphasia. For accessible websites to be delivered, the involvement of people with aphasia is paramount. Conclusions: There are three common themes emerging from this series of research studies. First, accessibility is an important and often emotive issue for people with aphasia. Second, people with aphasia are marginalised by a communicatively inaccessible society. Third, there is considerable diversity among people with aphasia about their perceptions of the barriers and facilitators to communication in the community.

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Abstract Purpose: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. Methods: The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking. Results: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized by family members relating to the person with aphasia, primarily linked to body functions (60%). Conclusions: People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of body function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Implications for Rehabilitation Important outcomes for people with aphasia and their families span all components of the ICF. The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia. The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF. The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families.

Which treatment outcomes are most important to aphasia clinicians and managers? An international e-Delphi consensus study

ABSTRACT Background: Clinicians have expressed frustration at the lack of strong evidence for aphasia treatments. Inconsistent outcome measurement practices across treatment trials have negatively impacted the quality and strength of evidence for aphasia interventions. Core outcome sets (COSs; minimum sets of outcomes/outcome measures) are increasingly being used to maximise the quality, relevancy, transparency, and efficiency of health treatment research. The current study is the third in a trilogy of stakeholder perspectives to inform the development of a COS for aphasia treatment research. Aims: To identify essential aphasia treatment outcomes from the perspective of an international sample of clinicians and managers working in aphasia rehabilitation. Methods & Procedures: A three-round e-Delphi exercise was conducted with aphasia clinicians and managers. In total, 265 clinicians and 53 managers (n = 318) from 25 countries participated in round 1. In round 1, participants responded to the open-ended question, “In your opinion, what are the most important outcomes (results) from aphasia treatment?” Responses were analysed using inductive content analysis. In rounds 2 and 3, 153 and 137 participants respectively rated the importance of each outcome generated in round 1 using a nine-point rating scale. Outcomes reaching predefined consensus criteria were further analysed using the International Classification of Functioning Disability and Health (ICF) coding. Outcomes & Results: Analysis of round 1 participant responses produced 1709 codes, which were condensed into 90 subcategories, 25 categories, and 4 themes. In rounds 2 and 3, a total of 51 outcomes reached consensus. The two outcomes with the highest levels of consensus both related to communication between the person with aphasia and their family/carers/significant others. Outcomes relating to people with aphasia most frequently linked to the ICF activity/participation component (52%), whilst outcomes relating to family/carers/significant others were evenly divided between the ICF activity/participation component (36%) and environmental factors (36%). Conclusions: Consensus was reached on 51 essential aphasia treatment outcomes. Very high levels of consensus (97–99%) between clinicians were achieved for outcomes relating to communication between the person with aphasia and their communication partner/s, suggesting that in the clinical environment improved dyadic communicative interaction is an important indicator of treatment success. The high proportion of outcomes linking to the ICF activity/participation component highlights the importance of measuring outcomes beyond impairment, both in clinical and research settings. These findings will be combined with other stakeholder perspectives and a systematic review of outcome measures to develop a COS for aphasia treatment research.

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 participants 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.