Awareness Of Aphasia Research Articles

Public awareness of aphasia – results of a Swedish sample

ABSTRACTBackground: Public awareness of a condition like aphasia may affect service provision and everyday life communication for people affected by the condition. Nevertheless, studies have shown that the public awareness of aphasia is low in many countries.Aims: This study explores awareness and knowledge of aphasia among the general public in Sweden.Methods & Procedures: We describe two surveys on the public awareness of aphasia undertaken using convenience samples in four different cities in southern Sweden. The questionnaire was closely based on those used in previous studies of aphasia awareness around the world. A total of 372 participants were recruited. Results are presented in terms of whether participants had heard of aphasia or not, and in the case that they had heard of it, whether they had a basic knowledge of the condition. Further analyses were undertaken on these three groups of participants: their gender and age distributions, educational background, what they knew about aphasia, and where they had learnt about it.Outcomes & Results: The results are discussed in comparison with similar surveys elsewhere, and we note the comparatively high percentage of participants who have heard of aphasia in our survey though, mirroring previous surveys, the amount of knowledge was often limited or incorrect. Unlike in other surveys, no clear relation was found between gender and awareness of aphasia, or education and awareness of aphasia. Age profiles and the source of participants’ information about aphasia were similar to earlier studies: that is, older people seem to have more aphasia awareness than younger people do. Further, media like TV, radio, newspapers, and magazines were the most often reported source for knowledge of aphasia.Conclusions: There is a need for further work to increase public awareness of aphasia and different forms of public media may play an important role in this endeavour.

From individual to global: Human rights and aphasia

This commentary marks the 70th anniversary of the Universal Declaration of Human Rights by examining Article 19 and its application to people with aphasia. This group of people still face lack of access, stigmatisation, exclusion, disadvantage and social withdrawal as well as poor public awareness of aphasia and inadequate prioritisation of support and resources. Nevertheless, a range of creative initiatives at individual, healthcare, local community, national and global levels have helped to connect and empower people with aphasia. Such initiatives include provision of accessible information in a range of media, inclusion of people with aphasia in decision-making and as research partners, awareness raising campaigns to counter attitudinal barriers, organisation of community aphasia groups, development of guidelines for best practice, national aphasia associations and international collaborations such as Aphasia United. While ongoing work and resourcing is needed to expand these efforts further, they have helped people with aphasia to be heard and to protect their sense of dignity which underlies human rights. A human rights approach can unite, politicise and refocus these efforts, and highlight the essential role of communication in fostering a better quality of life.

Anosognosia and self-correction of naming errors in aphasia

ABSTRACTBackground: There has been comparatively little research into anosognosia for aphasia (a lack of awareness of acquired language deficits). Direct assessments of metacognitive awareness tend to rely on high levels of verbal competence and are difficult for people with aphasia to complete. Therefore, indirect measures of awareness have been considered, notably the person’s self-correction of his or her naming errors. Different mechanisms for self-correction based in comprehension or production skills have been proposed. In addition, in other areas of cognition, the relationships between direct and indirect measures and underlying forms of awareness have not been clearly established.Aims: The aims of this study were: (a) to investigate the relationship between a direct and an indirect measure of awareness of aphasia, (b) to examine the role of executive functioning in performance on both assessment types, and (c) to examine the relationship between these measures and underlying language comprehension and production skills.Methods & Procedures: A total of 48 people with aphasia participated, drawn from rehabilitation hospital caseloads. Participants were assessed on a language battery, a non-verbal test of executive function, a direct measure of awareness (ratings of difficulties), and had self-correction behaviour examined in a 40-item naming test.Outcomes & Results: There was a trend relationship between performance on the direct and indirect measures. Both related to overall severity of language impairment, with more severely impaired people being less aware of their difficulties. The two measures, however, dissociated with respect to single-word production and comprehension scores: the direct measure related to production and not comprehension, while the indirect measure related to comprehension and not production. Executive functioning related only to the direct measure of metacognitive awareness. Within production scores, the rate of correction success rather than pre-correction naming rate was associated with metacognitive awareness.Conclusions: This study revealed different underlying bases, in language processes and executive function, for two measures of anosognosia for aphasia. When used to assess awareness of deficits, direct and indirect methods should not be regarded as equivalent.

Extending knowledge of the public awareness of aphasia in the Balkans: Serbia and Montenegro

Purpose: Public awareness of aphasia has been surveyed in a number of countries revealing that it is universally low. We report results of surveys in the Balkan countries Serbia and Montenegro and compare results with data from Croatia and Slovenia.Methods: Convenience surveys of the general public were conducted in public places like shopping centers/malls and parks in Serbia (N = 400) and Montenegro (N = 500) using an adapted version of the public awareness of aphasia survey questionnaire. Respondents were asked whether they have heard of aphasia and tested with questions about aphasia. Information on gender, age, occupation and education was recorded.Outcomes: Twelve percent (Serbia) and 11% (Montenegro) had heard of aphasia, but just 4% (Serbia) and 3.2% (Montenegro) had a basic knowledge of aphasia. Age, gender and occupation interacted variably with awareness. Between 16% (Slovenia) and 60% (Croatia) said they had heard of aphasia (10.5% overall mean for the four countries) and basic knowledge of aphasia across the four countries ranged between 3.2 and 7%.Conclusions: Levels of awareness of aphasia in the Balkans are low and variably associated with age, gender, socio-economic and educational levels. Respondents with some knowledge of aphasia gained it through personal or professional interaction with aphasia or the media. The data provide a basis for awareness raising in Balkan countries to reduce stigmatization, improve community access and understanding.Implications for rehabilitationAwareness of aphasia is low universally, even among healthcare workers.Low public awareness of a condition, like aphasia, results in under-funded research and service provision.In order to raise public awareness of aphasia we need to know how many members of the general public know about it.Improvements in public awareness could positively affect funding, the quality of services, and the public understanding and acceptance of individuals with aphasia in the community.Improving awareness of aphasia in those who come into contact with aphasic people, like healthcare workers, could significantly improve the healthcare experience of people with aphasia and their families.

Aphasia and Interdisciplinarity

Aphasia is an acquired language impairment, which occurs due to a brain damage. In receptive aphasia speech production is more fluent but less meaningful. In expressive aphasia, the patient's intellect might be intact, but speech production severely damaged. In either case the psychosocial impact of this condition is significant. Although, there are several studies on aphasia in medicine, psychology and linguistics, the latter is rarely involved in researching aphasia by medical teams. A recent survey on awareness of aphasia involving 226 Romanian respondents (154 with medical background) showed that only one physician was aware that linguistics also has aphasia as a research focus. This paper describes how we see collaboration between linguistics and other fields of specialities interested in researching aphasia. Medicine and Linguistics Medical imaging could be particularly helpful in mapping how the adjacent areas of the damaged language centre of the brain overtake lost functions for a visual understanding of speech activation in aphasics. Psychology and Linguistics: According to the biopsychosocial approach, therapeutic methods could be tailored according to functions of the nervous system of the individual, which would improve the efficiency of the applied therapy. Information Technology and Linguistics: Assistive technology consists of computers and related devices to aid aphasics’ communication and the relearning process. Speech analysis by PRAAT, a free computer software, shows that emotional elements can play the role of facilitating factors in the communication of aphasics. Conclusions In spite of the vast literature on aphasia we found little evidence of collaborative work among medicine, psychology, information technology and linguistics. Joint efforts may produce better results in understanding aphasia and subsequently can help to construct more productive methods for the benefit of these patients.

Raising public awareness of aphasia in southern Ontario, Canada: A survey

Purpose: Despite the relatively high prevalence of aphasia, research indicates that, world-wide, public awareness of aphasia is lacking. Of the surveys that have been conducted internationally, none has studied the Canadian public's awareness of aphasia. The purpose of the present survey was to assess public awareness and basic knowledge of aphasia of individuals in southern Ontario, Canada.Method: Using the same questionnaire that has been used in other countries, face-to-face surveys were conducted in public places (e.g. parks) at various locations in southern Ontario. Respondents were asked questions pertaining to their awareness and knowledge of aphasia. The number of surveys retained for analysis was 831. In addition to an evaluation of public awareness and knowledge of aphasia, the potential influences of age, gender, and occupation were analysed. For those who had heard of aphasia, questions were asked to determine how or where they had heard of aphasia.Result: Consistent with the literature, overall public awareness and basic knowledge of aphasia in southern Ontario was found to be limited. The factors of age, gender and occupation were found to influence the results.Conclusion: This investigation supports the need for better promotion of aphasia awareness to the public in southern Ontario and, by extension, in Canada.

Public awareness of aphasia in New Zealand

Background: Awareness and knowledge of aphasia is limited among the public and in the healthcare sector despite considerable efforts being made internationally to address this. Advances in medical interventions have improved life expectancy following stroke so it is assumed that there are more people living with aphasia now than at any time in the past. Given this increase and the attempts to provide information in an accessible and timely manner we predicted that awareness and knowledge of aphasia would be improved compared to when it was last examined 10 years ago. Aims: This study sought to investigate whether public awareness of aphasia has improved since the original international study by Simmons-Mackie et al. in 2002. A second aim was to compare health professionals' awareness and knowledge of aphasia specifically with that of the general public. Methods & Procedures: A brief face-to-face survey was administered to ascertain awareness and knowledge of Parkinson's disease (PD), stroke, and aphasia, as well as the causes and symptoms of aphasia. A total of 300 people were surveyed (200 were members of the general public and a further 100 were health sector workers). Information was collected on age (ranging from 21–85 years), sex (125 males and 175 females), employment status, and ethnicity. The data were analysed to determine the number of individuals who had awareness and knowledge of the three conditions. A binary logistic regression was calculated to predict the factors most likely to influence awareness of aphasia. Outcomes & Results: Aphasia awareness was 30% for the whole sample and aphasia knowledge was 8%. When we separate out the general public from those in the health sector the results are quite different: 11% of the general public had awareness of aphasia and only 1.5% had knowledge, whereas 68% of those in the health sector had awareness and 21% met the criteria for basic knowledge of aphasia. When compared to knowledge and awareness of stroke and PD, these figures are very poor. Conclusions: Ten years after the first surveys, awareness and knowledge of aphasia remain disappointingly low. We suggest that, whatever the efforts to date, we need to substantially increase them to improve public and health sector awareness and knowledge of aphasia. Future initiatives must be directed towards providing adequate knowledge in order to increase the health outcomes for people with aphasia and their families.

What People Living With Aphasia Think About the Availability of Aphasia Resources

Obtaining health information and resources can influence an individual's (a) access to services, (b) interactions with health care providers, and (c) ability to manage one's own health needs. The purpose of this study was to gather the perceptions of consumers living with aphasia about resource availability and information needs. An online survey of consumers in the United States was conducted about the availability of aphasia resources. Analysis of survey responses and comments formed the basis for focus group questions. Four focus groups consisting of persons with aphasia and their caregivers were conducted to explore the survey response themes more deeply. Survey respondents (N = 302) rated aphasia resources as "somewhat difficult to find." Topics ranked as most important by these respondents were (a) how to keep improving, (b) communication strategies, (c) aphasia treatment techniques, (d) coping strategies, and (e) strategies for caregivers. Survey comments and focus group themes suggested that accessing information is difficult, health care providers are not perceived to know about aphasia resources, and there is a lack of public awareness of aphasia that is a barrier to finding information and resources. Understanding how people living with aphasia seek information may allow us to better tailor access to resources in the future.

Awareness of Aphasia and Aphasia Services in South India: Public Health Implications

Awareness of Aphasia and Aphasia Services in South India: Public Health Implications

If I Can Talk, You Can Talk

If I Can Talk, You Can Talk

Reconciling the perspective of practitioner and service user: findings from The Aphasia in Scotland study

It is widely accepted that service users should be actively involved in new service developments, but there remain issues about how best to consult with them and how to reconcile their views with those of service providers. This paper uses data from The Aphasia in Scotland study, set up by NHS Quality Improvement Scotland to identify the direction of the development of services for people with aphasia in Scotland. It examines the views both of those who provide and of those who receive those services. The study integrated findings from a questionnaire to all speech and language therapists treating people with aphasia across Scotland with findings from focus groups with service users and aphasia practitioners. Three themes were identified: (1) public and professional awareness of the impact of aphasia on the individual and their family; (2) current service provision and gaps in services; and (3) directions for the future development of services and barriers to change. Although the impact of aphasia is well recognized amongst most professionals (that is, not just speech and language therapists), considerable concern was expressed about the level of knowledge amongst professionals who do not specialize in stroke care and about public awareness of aphasia. Service providers indicated a shift in the model of service delivery of which the service users were largely unaware. Although the majority of speech and language therapists spend most of their time providing one-to-one therapy, and this is valued by service users, there is undoubtedly an emerging shift towards a focus on broader social function and the inclusion of the person with aphasia in supportive social networks. This creates tensions because of the existing pressure for individualized models of delivery. Concern was expressed by practitioners, although not echoed by patients, about the transition from the acute sector to primary care. Practitioners also expressed concern about the introduction of more recent services like NHS 24 and e-health initiatives, which rely on means of communication that may be particularly challenging for people with aphasia. The findings from this study indicate that although there are clearly common perspectives, the views of people with aphasia about services do not necessarily coincide with those of service providers. This is an important consideration when initiating consultation and highlights the need for clarity on the part of practitioners in identifying the aims and objectives of their services as far as people with aphasia are concerned.

Night Sky Illuminates Struggles With Aphasia

You have accessThe ASHA LeaderFeature1 Jul 2009Night Sky Illuminates Struggles With Aphasia Kellie Rowden-Racette Kellie Rowden-Racette Google Scholar More articles by this author https://doi.org/10.1044/leader.FTR5.14092009.24 SectionsAbout ToolsAdd to favorites ShareFacebookTwitterLinked In When Ellayne Ganzfried, executive director of the National Aphasia Association (NAA), went to the May 2008 wedding of her husband’s client, she could have spent the hours doing what most peripheral wedding guests do—nibbling food, drinking wine, maybe doing the Chicken Dance, and then going home. But Ganzfried is a natural networker and when she found herself sitting at a cocktail table with a stranger, she did what came naturally—she asked him what he did for a living. “I’ve always believed in the power of networking,” Ganzfried said. “Great things have come my way because of it.” And this time was no exception. The stranger turned out to be Stan Raiff, a Broadway producer looking for new projects. Coincidentally Ganzfried had an idea for him. What about producing Susan Yankowitz’s “Night Sky,” a play about an astronomer with aphasia? The play, which was inspired by the late theater legend Joseph Chaikin’s own battle with aphasia, had last been on stage in 1991. Raiff, who studied speech-language pathology as an undergraduate student, was intrigued. After several follow-up discussions and a staged reading, Raiff hopped on board and agreed to produce an off-Broadway production of “Night Sky.” What happened after that can only be described as a whirlwind. Less than six months after that fateful wedding meeting, a stage production was conceived. Although Ganzfried described herself as someone who has “tried many, many things,” theater was never one of them. Nonetheless, she took part writing, staging, and even casting, where she sat behind a table and watched as the actors auditioned. “I felt like Paula Abdul on ‘American Idol’!” she laughed. She also learned about theater’s condensed time frame. From the time that Raiff agreed to produce “Night Sky” to the benefit performance on June 4 (the beginning of National Aphasia Awareness Month), the play went through an enormous amount of rewrites, staging tweaks, and editing. “There really wasn’t a lot of preplanning, which was strange for me,” Ganzfried said. “I had to adjust to what felt like flying by the seat of my pants, but it was just business as usual to them.” But this involvement was more than just an educational opportunity for Ganzfried to learn about theater—it was also a chance for theater to learn about aphasia. On the first day of rehearsal, Ganzfried arranged for the actors to observe a local aphasia support group, where they met people living with aphasia—some with mild cases and others who were affected more severely—and asked a lot of questions. The trip proved to be eye-opening, Ganzfried said. “It was interesting for [the actors] to learn that people with aphasia retain their intellect, humor, and other capabilities. That’s one of the most common misconceptions,” she said. The visit was eye-opening for her as well. “I guess I took for granted that everybody knows what speech-language pathologists do and their role in treatment, but they don’t. I was giving suggestions on everything from whether an SLP would be touching a patient to if they would be wearing a white coat.” The aphasia-immersion program didn’t stop there. A week later Ganzfried arranged for people with aphasia and their families to attend one of the rehearsals. She wanted to see their reactions to the actors’ performances and to make sure the story resonated with them. Happily, it did. The performance was very well-received and the actors gladly incorporated suggestions from their audience into their performances. The play has been through rehearsal after rehearsal, had an NAA benefit performance, and ran May 22–June 20, receiving several positive reviews. The New York Times called it “evocative as well as informative.” NAA will use all proceeds from the benefit performance to help provide resources and services to people with aphasia and their families. “This has been an incredible experience,” said Ganzfried. “[The actors and the audience] really embraced the subject because it’s more than about aphasia—it’s about communication between people.” Author Notes Kellie Rowden-Racette, print and online editor for The ASHA Leader, can be reached at [email protected]. For more information about “Night Sky” visit the play’s Web site and The National Aphasia Association. Advertising Disclaimer | Advertise With Us Advertising Disclaimer | Advertise With Us Additional Resources FiguresSourcesRelatedDetails Volume 14Issue 9July 2009 Get Permissions Add to your Mendeley library History Published in print: Jul 1, 2009 Metrics Downloaded 64 times Topicsasha-topicsleader_do_tagleader-topicsasha-article-typesCopyright & Permissions© 2009 American Speech-Language-Hearing AssociationLoading ...

Public knowledge about aphasia: A survey with comparative data

Background: Five years ago, public awareness of aphasia was low (Simmons Mackie, Code, Armstrong, Stiegler, & Elman, 2002). This created problems for those affected by the condition and may have impacted on service provision (Elman, Ogar, & Elman, 2000). Aims: This study aimed to explore current public knowledge of aphasia and a comparator neurological condition (Parkinson's disease). It also investigated respondents' sources of information and whether demographic factors affected knowledge. Methods and Procedures: A brief factual questionnaire was administered to 100 members of the general public and 26 friends and relatives of people with aphasia. This explored knowledge of diagnostic terms, causes, and symptoms. It also asked respondents how they had gained their knowledge and collected basic demographic details. Outcomes and Results: Knowledge about aphasia was low and significantly less than knowledge about Parkinson's disease. Carers scored significantly higher than the general public on aphasia, although their scores for aphasia were no higher than their scores for Parkinson's disease. Respondents gained their knowledge mainly through the media and personal connections. There was evidence that ethnicity may affect knowledge. Conclusions: Although data were collected from only two locations, the results of this survey suggest that work is still needed to improve public awareness of aphasia. Reasons and implications are discussed. This research was supported by West Middlesex University Hospital Speech and Language Therapy Department (Hounslow PCT), UK.

Interviews with people with aphasia: Environmental factors that influence their community participation

Background: Speech‐language pathologists have been encouraged to create communication‐friendly environments to enable the everyday participation of their clients with aphasia. However, we still do not know the scope of the negative environmental factors (barriers) and positive environmental factors (facilitators) that need to be addressed in order to create these types of environments. The authors wish to acknowledge the contributions of the research participants and RSL Care. This study was also proudly supported by the Queensland Government's Growing the Smart State PhD Funding Program and may be used to assist public policy development. The State of Queensland accepts no responsibility for decisions or actions resulting from any information supplied. The views and information contained in the research do not necessarily represent the views or opinions of the Queensland Government and carry no endorsement by the Queensland Government. Aims: This investigation explores the environmental factors that hinder or support the community participation of adults with aphasia. Specifically, the in‐depth interview study asked: (a) What environmental factors are perceived by people with aphasia to hinder their community participation? (b) What environmental factors are perceived by people with aphasia to support their community participation? (c) What themes underlie the environmental factors that are perceived to hinder or support the community participation of adults with aphasia? A companion study (Howe, Worrall, & Hickson, in press) reports the findings of an observational investigation that addressed similar research questions. Methods and Procedures: The study used the research strategy of qualitative description. Semi‐structured in‐depth interviews were conducted with 25 adults with aphasia. All participants had aphasia caused by a stroke, lived in the community, and were at least 6 months post stroke. Informants were 34 to 85 years old with varied aphasia severity as measured by the Western Aphasia Battery. Qualitative content analysis was used to analyse the data. Outcomes and Results: The study identified 156 barriers and 206 facilitators that were grouped into six types of environmental factors (i.e., Barriers Related to other People, Physical Barriers, Societal Barriers, Facilitators Related to Other People, Physical Facilitators, and Societal Facilitators). In addition, the research revealed seven themes: (a) Awareness of Aphasia; (b) Opportunity for Participation; (c) Familiarity; (d) Availability of Extra Support for Communication; (e) Communication Complexity; (f) Message Clarity; (g) Time Available for Communication. Conclusions: This study has identified a wide range of barriers and facilitators and several themes that speech pathologists and policy makers need to consider in order to make community environments more accessible for people with aphasia.

Perspectives on public awareness of stroke and aphasia among Turkish patients in a neurology unit

Recent studies on awareness have drawn attention to the fact that aphasia is a little known disorder to the public, in spite of all the publicity about this frequently occurring neurogenic language disorder. Being a very new concept, studies of awareness are rare in Turkey. This survey study assessed the extent of public awareness of neurological disorders, including aphasia, and information sources to answer questions about such disorders. A survey questionnaire consisting of 22 brief questions divided into three sections of awareness was administered to a convenience sample of 196 adults at a University Hospital in 2004. The results indicated that epilepsy and dementia are “the most well‐known”, and Multiple Sclerosis (MS) is “the least‐known” among the surveyed diseases/disorders. Aphasia awareness was also low. The respondents preferred doctors as the most reliable information source. Speech and language therapists were found to be one of the information sources in advocating publicity as well. Most respondents expected to receive information from the doctors; who, in Turkey, are totally occupied with the physical aspects of health care provision. Neurologists, in collaboration with speech and language therapists, should be in a position to develop educational programmes to increase public awareness.

What is aphasia? Results of an international survey

Background: Although the literature implies that there is limited public awareness of aphasia, direct data have been lacking. Aims: Therefore, a survey was undertaken to sample public awareness of aphasia. Methods & Procedures: A face-to-face survey of individuals in public places in England, the USA, and Australia was undertaken. A total of 978 individuals were surveyed. Data were analysed to determine the number of informants who had “heard of aphasia” and the number with “basic knowledge of aphasia”. In addition, characteristics of informants were analysed. Outcomes & Results: Of the individuals surveyed, 133 said they had heard of aphasia (13.6%), but only 53 (5.4%) met the criterion of having “basic knowledge of aphasia”. Conclusions: These findings lend support to the notion that the public lacks awareness or understanding of aphasia. As public awareness can affect funding, quality of services, and public acceptance of individuals with a disorder, public awareness and advocacy campaigns are needed.

The public awareness of aphasia: an international survey.

We surveyed 929 shoppers in Exeter (England), Louisiana (USA) and Sydney (Australia) to determine what they knew of aphasia. Between 10% and 18% said they had heard of aphasia but only between 1.5% and 7.6% had even some basic knowledge of aphasia. We found that more females knew something about aphasia than males and that older people were more likely to have heard of it, although those with some knowledge were significantly younger. Informants had heard of aphasia mainly through their work or the media and were mainly professionals like teachers, nurses, therapists, managers and administrators, followed by a retired/student group. We found some differences in awareness levels in the different locations we sampled. Results have implications for targeting awareness raising and campaigning.

MossRehab Aphasia Center: A Collaborative Model for Long-Term Rehabilitation

One of the biggest challenges facing aphasia rehabilitation in today’s health care environment is to find ways to extend the period of language rehabilitation and provide the needed services in a cost-effective manner. The MossRehab Aphasia Center was developed to meet this challenge and to serve as a model for treating this and other chronic conditions. Participation in research projects and short-term therapy provides focused interventions at strategic points in the recovery process. Computer-based therapy and regular home assignments enhance the frequency and intensity of treatment in a cost-effective manner. Professional and peer led groups provide opportunities for conversational interactions, psychosocial support, and education. Social and fund-raising events are opportunities for advocacy, community education, and aphasia awareness. The impact of these programs on communication and psychosocial well-being is illustrated through the individual experiences of Center members.