Living successfully with aphasia: Family members share their views

Language and lifestyle changes experienced following the onset of aphasia extend beyond the individual to impact family members of persons with aphasia. Research exploring the meaning of living successfully with aphasia has explored the perspectives of individuals with aphasia and speech-language pathologists. Family members' views of living successfully with aphasia may also contribute valuable insights into positive adaptive processes and factors that may influence clinical interventions and community-based services for individuals with aphasia and their families. Purpose: To explore, from the perspectives of family members of individuals with aphasia, the meaning of living successfully with aphasia. Method: Twenty-four family members (nominated by individuals with aphasia) participated in semistructured in-depth interviews about living successfully with aphasia. Interviews were transcribed verbatim and analyzed using interpretative phenomenological analysis to identify themes relating to the meaning of living successfully with aphasia. Results: Seven themes were identified from analysis of family member participant transcripts: getting involved in life, support for the person with aphasia, communication, family members' own needs, putting life in perspective, focusing on and celebrating strengths and improvements, and experiences with services. Conclusion: Findings provide evidence to support previous research indicating that aphasia affects the whole family and not just an individual. The inclusion of family members as part of the rehabilitation team is indicated. Family members' needs and priorities must be considered in conceptualizing living successfully with aphasia to ensure family members are included in intervention programs

Barriers and facilitators to mobile phone use for people with aphasia

Purpose: Mobile phone use increases social participation. People with the communication disorder of aphasia are disadvantaged in the use of information and communication technology such as mobile phones and are reported to be more socially isolated than their peers. The World Health Organization's International Classification of Functioning, Disability and Health provides a framework to address the impact of environmental factors on individual participation. The aim of this preliminary study was to identify the barriers and facilitators to mobile phone use for people with aphasia. Method: A qualitative descriptive study involving two phases was conducted: (1) semi-structured interviews with 6 individuals with aphasia who owned or expressed a desire to own a mobile phone; (2) structured observations of key scenarios identified in the interviews of 3 participants who were sampled from the interview study. Results: Results identified 18 barriers and 9 facilitators to mobile phone use. Key barriers and facilitators were identified in the areas of design and features, written support and training, and communicative partners. Conclusion: Mobile phone use can be problematic for people with aphasia. Intervention needs to address the barriers and utilise the facilitators to mobile phone use for this population. Further research is required to inform policy and intervention programs to ensure that people with aphasia have access to this technology

Social participation for older people with aphasia: The impact of communication disability on friendships

Purpose: The language changes experienced by a person with aphasia following a stroke often have sudden and long-lasting negative impact on friendships. Friendship relationships are core to social engagement, quality of life, and emotional well-being. The aims of this study were to describe everyday communication with friends for older people with and without aphasia and to examine the nature of actual friendship conversations involving a person with aphasia. Method: This naturalistic inquiry drew data from two phases of research: a participant observation study of 30 older Australians, 15 of whom had aphasia following a stroke, and a collective case study using stimulated recall to examine friendship conversations involving an older person with aphasia. Results: People with aphasia communicated with fewer friends and had smaller social networks. "Friendship" was a core domain of communication for older people and participation in leisure and educational activities was focal in everyday communication with friends. Case study data of conversations between three older people with aphasia and their friends illuminated features of "time," the role of humour, and friends having shared interests. Conclusion: Aphasia has been found to impact on friendships. A need exists for research and intervention programs to address communication with friends for older people with aphasia

A core outcome set for aphasia treatment research: the ROMA consensus statement

Background: A core outcome set (COS; an agreed, minimum set of outcomes) was needed to address the heterogeneous measurement of outcomes in aphasia treatment research and to facilitate the production of transparent, meaningful and efficient outcome data. Objective: The Research Outcome Measurement in Aphasia (ROMA) consensus statement provides evidence-based recommendations for the measurement of outcomes for adults with post-stroke aphasia within phase I-IV aphasia treatment studies. Methods: This statement was informed by a four-year program of research which comprised investigation of stakeholder-important outcomes using consensus processes, a scoping review of aphasia outcome measurement instruments, and an international consensus meeting. This paper provides an overview of this process and presents the results and recommendations arising from the international consensus meeting. Results: Five essential outcome constructs were identified: Language, communication, patient-reported satisfaction with treatment and impact of treatment, emotional wellbeing, and quality of life. Consensus was reached for the following measurement instruments: Language: The Western Aphasia Battery Revised (WAB-R) (74% consensus); emotional well-being: General Health Questionnaire (GHQ)-12 (83% consensus); quality of life: Stroke and Aphasia Quality of Life Scale (SAQOL-39) (96% consensus). Consensus was unable to be reached for measures of communication (where multiple measures exist) or patient-reported satisfaction with treatment or impact of treatment (where no measures exist). Discussion: Harmonisation of the ROMA COS with other core outcome initiatives in stroke rehabilitation is discussed. Ongoing research and consensus processes are outlined. Conclusion: The WAB-R, GHQ, and SAQOL-39 are recommended to be routinely included within phase I-IV aphasia treatment studies. This consensus statement has been endorsed by the Collaboration of Aphasia Trialists, the British Aphasiology Society, the German Society for Aphasia Research and Therapy, and the Royal College of Speech Language Therapists

Meeting the needs of people with aphasia, their families and speech-language pathologists: tensions in the goal-setting process

Goal-setting is an integral part of rehabilitation and it has been proposed that poor outcomes may be attributed to a mismatch between the goals of clients and the rehabilitation team (van den Broek, 2005). The aim of this multisite qualitative study was to describe the goals of 50 people with aphasia and their family members and compare these to their treating speech-language pathologists’ goals. In-depth interviews revealed the primary tensions in the process revolved around the importance of the clinical relationship, the influence of context, the translation of goals, hope, information, and family members as clients

Service industry workers perceptions of barriers and facilitators for people with aphasia in their community

The loss of language and the inability to communicate effectively as a result of aphasia often affects community participation. Within the World Health Organisation International Classification of Functioning, Disability and Health, disability is recognised as a dynamic interaction between the individual’s health condition such as aphasia and his or her personal and environmental factors. There has been little research identifying the environmental facilitators and barriers to participation for people with aphasia in the community, and little research focusing on the perspective of service industry workers (e.g. retailers, restaurant and café workers, bank employees, travel agents, pharmacy assistants). This study aimed to identify barriers and facilitators to community participation for adults with aphasia from the perspective of service industry workers

Towards a Synthetic Chloroplast

The evolution of eukaryotic cells is widely agreed to have proceeded through a series of endosymbiotic events between larger cells and proteobacteria or cyanobacteria, leading to the formation of mitochondria or chloroplasts, respectively. Engineered endosymbiotic relationships between different species of cells are a valuable tool for synthetic biology, where engineered pathways based on two species could take advantage of the unique abilities of each mutualistic partner.We explored the possibility of using the photosynthetic bacterium Synechococcus elongatus PCC 7942 as a platform for studying evolutionary dynamics and for designing two-species synthetic biological systems. We observed that the cyanobacteria were relatively harmless to eukaryotic host cells compared to Escherichia coli when injected into the embryos of zebrafish, Danio rerio, or taken up by mammalian macrophages. In addition, when engineered with invasin from Yersinia pestis and listeriolysin O from Listeria monocytogenes, S. elongatus was able to invade cultured mammalian cells and divide inside macrophages.Our results show that it is possible to engineer photosynthetic bacteria to invade the cytoplasm of mammalian cells for further engineering and applications in synthetic biology. Engineered invasive but non-pathogenic or immunogenic photosynthetic bacteria have great potential as synthetic biological devices

Experiences of Living With Primary Progressive Aphasia: A Scoping Review of Qualitative Studies

Introduction: Understanding the experiences of people who live with primary progressive aphasia (PPA) can inform the development of appropriate speech-language pathology services for this population. This review aimed to summarize the qualitative research on the experience of living with PPA from the perspective of the individuals with the disorder and their families. Methods: A scoping review was conducted. Results: Eight studies met the inclusion criteria. Themes in the 3 investigations that focused on the individual’s perspective included adapting to overcome language difficulties and dealing with increased dependency. Themes identified in the 5 studies that highlighted the family’s perspective included observing and adapting to language, behavioral, and social communication changes; lack of awareness of PPA; control; and the impact of the historical relationship. Discussion: Experiences from the 2 perspectives differed. Further research is needed, particularly in relation to identifying the general experience of PPA from the perspective of individuals with the disorder. </jats:sec