Experiences of pet ownership with aphasia: a thematic analysis using the ICF framework

ABSTRACTBackground: The term “communicative participation” refers to participation in the communication aspects of life roles at home, at work and in social and leisure situations. Participation in life roles is a key element in biopsychosocial frameworks of health, such as the World Health Organization’s International Classification of Functioning, Disability and Health (ICF) and the Aphasia Framework for Outcomes Measurement. The Communicative Participation Item Bank (CPIB) was developed as a patient-reported measure of communicative participation for adults. Initial validation focused on adults with motor speech or voice disorders. No prior studies have conducted quantitative validation analyses for the CPIB for people with aphasia (PWA).Aims: The primary purpose of this study was to begin validation of the CPIB for PWA by conducting an analysis of differential item functioning (DIF). A DIF analysis was used to identify whether item parameters of the CPIB differed between PWA and the populations used in prior CPIB calibration. Secondary analyses evaluated the level of assistance needed by PWA to complete the CPIB, relationships between the CPIB and a gold-standard patient-reported instrument for PWA—American Speech-Language-Hearing Association Quality of Communication Life Scale (ASHA-QCL) and relationships between PWA and family proxy report on the CPIB.Methods & Procedures: This study included 110 PWA and 90 proxy raters. PWA completed a battery of patient-reported questionnaires in one face-to-face session. Speech-language pathologists provided communication support. Data on aphasia severity from the Western Aphasia Battery—Revised (WAB-R) and demographic data either existed from prior research or were collected during the session. Proxy raters completed a similar battery of self-report questionnaires.Outcomes & Results: Results of the DIF analysis suggested statistically significant DIF on two of the 46 items in the CPIB, but the DIF had essentially no impact on CPIB scores. PWA with WAB-R Aphasia Quotient scores above 80 appeared comfortable reading the CPIB items, although required occasional assistance. Most participants who were unable to complete the CPIB had WAB-R Aphasia Quotient scores lower than 50. Correlation between the CPIB and ASHA-QCL was moderate; and correlation between PWA and proxy scores was low.Conclusions: Most PWA were able to respond to CPIB items, although most required or requested support. Although these results are preliminary due to a small sample size, the data support that the CPIB may be valid for PWA. Caution is warranted regarding proxy report because of low correlation between PWA and proxy ratings.

Event Abstract Back to Event Investigating the Efficiency of Group Therapy on Improving Conversational Skills in People with Aphasia Yael Neumann-Werth1* 1 Queens College (CUNY), United States Group therapy provides a naturalistic setting to enhance functional communication skills, e.g., conversational abilities, in people with aphasia (PWA). The Life Participation Approach to Aphasia (LPAA) supports the view of treating PWA as members of a social unit with his/her conversational partner(s). Therefore, group aphasia therapy is a highly beneficial approach to achieving this goal as it provides a natural forum for supporting conversational practice. There are numerous studies that have looked at various contributors to group therapy outcomes, namely, transactional and interactional assessment, in addition to linguistic, functional/social, quality of life, psychological, and cognitive/executive functioning measures. However, these variables have not been studied collectively in one in-depth study. This project intends to enhance our understanding of the effectiveness of group therapy on conversation skills using a multitude of measurement outcomes. Findings from this pilot study will then be used to develop a comprehensive standardized tool for eventual professional use in various rehabilitation settings. The participant in this study was a non-fluent aphasic due to a unilateral cerebrovascular accident. He was 2-year post-onset, had no symptoms of dementia, adequate hearing and vision, used English as his primary language, and had adequate communicative abilities to engage in conversation. The subject participated in a group therapy which consisted of three other members with a variety of different types of aphasia. The subject was tested on an array of standardized tests and functional rating scales to study conversational changes pre-and post-group therapy. This included assessment of: transactional analysis, conversational analysis, interactional aspects in conversations (Measure of Interaction in Communication - MIC), language abilities using the Boston Diagnostic Aphasia Examination (BDAE-Short Form), comprehension through the use of the Token Test (Short Version), linguistic and executive functions by using Word Fluency, functional communication skills using the Communication Activities in Daily-Living (CADL-2), quality of life (Stroke and Aphasia Quality of Life Scale -SAQOL-39), psychological well-being (Geriatric Depression Scale - GDS), and executive function skills like planning, impulse inhibition, and the ability to shift cognitive focus (Delis-Kaplan Executive Function System). The group therapy was run once a week for 45 minutes over the course of 12 weeks. The sessions focused on discussing current event topics and group games with the overall goal of creating a social, supportive, and therapeutic community. Therapeutic principles were largely taken from Promoting Aphasic’s Communicative Effectiveness (PACE; Davis, 2005) where the conversational partner and the study participant took equal turns in the exchange of information, shared novel information, and were encouraged to use multi-modalities in communication, e.g. using gestures, pointing, an ABC board, writing. Pre-testing results indicate the participant’s performance was generally mild. Transactional success measured the participant’s ability to yield information regarding three short clips played from the Mr. Bean television show. We identified the main ideas for each clip and determined target words for the structure of the main ideas. On average, the subject was able to identify at least one target component from each main idea, however his overall performance level was low. When assessing interactional success, we observed the participant interact with a conversational partner. In this testing, the participant received a higher score for his interactional skills than his transactional skills. He did not demonstrate a verbal/vocal attempt to engage his communication partner or respond to interactional attempts; however, he scored much higher in his nonverbal communication (i.e. gesture, writing, drawing, etc.) attempt where he showed full and appropriate participation. While observing his transactional skills with a communicative partner, he scored the same on verbal/vocal and nonverbal communication; he exhibited adequate participation. With regards to his language abilities, he scored high in auditory comprehension with the Token test – SF. Other tests where the subject received a low score on were in the quality of life and geriatric depression scale. Initial analyses of post-therapy findings are currently being analyzed and will be completed prior to the conference date. References American Speech-Language-Hearing Association. (1998). The role of speech-language pathologists in identification, diagnosis, and treatment of individuals with cognitive-communication impairments. ASHA, 30, 79. Cruice, M., Worrall, L., Hickson, L., & Murison, R. (2003). Finding a focus for quality of life with aphasia: Social and emotional health, and psychological well-being. Aphasiology, 17(4), 333-353. Damico, J.S., Oelschlaeger, M., & Simmons-Mackie, N. (1999). Qualitative methods in aphasia research: Conversation analysis. Aphasiology, 13(9–11), 667–680. Davis, G. A. (2005). PACE revisited. Aphasiology, 19, 21-38. Delis, D. C., Kaplan, E., & Kramer, J. H. (2001). Delis – Kaplan Executive Function System (D-KEFS). San Antonio, TX: The Psychological Corporation. De Renzi, E., & Vignolo, LA. (1962). The Token test: A sensitive test to detect receptive disturbances in aphasia. Brain, 85, 665–678. Frattali, C.M., Thompson, C.K., Holland, A.L., Wohl, C.B., & Ferketic, M.M. (1995). Functional Assessment of Communication Skills for Adults: Manual. Rockville, MD: American Speech- Language-Hearing Association. Goodglass, H., Kaplan, E., & Barresi, B. (2001). The assessment of aphasia and related disorders. Lippincott Williams & Wilkins. Hilari, K., & Byng, S. (2001). Measuring quality of life in people with aphasia: the Stroke Specific Quality of Life Scale. International Journal of Language & Communication Disorders, 36(1), 86-91. Hilari, K., Wiggins, R., Roy, P., Byng, S., & Smith, S. (2003). Predictors of health-related quality of life (HRQL) in people with chronic aphasia. Aphasiology, 17(4), 365-381. Holland, A., Frattali, C., & Fromm, D. (1999). Communication Activities of Daily Living (2nd ed.). Austin, TX: Pro-Ed. Kagan, A. (1998). Supported conversation for adults with aphasia: Methods and resources for training conversation partners. Aphasiology, 12,9, 816-830. Pound C, Parr S, Lindsay J, Woolf C. Beyond aphasia: Therapies for Living with Communication Disability. Bicester, UK: Speechmark; 2000. Ramsberger, G. (2005). Achieving conversational success in aphasia by focusing on non-linguistic cognitive skills: A potentially promising new approach. Aphasiology, 19, 1066–1073. Ramsberger, G., and Rende, B. (2002). Measuring transactional success in the conversation of people with aphasia. Aphasiology, 16(3), 337-353. Saldert, C., Backman, E., and Hartelius, L. (2013). Conversation partner training with spouses of persons with aphasia: A pilot study using a protocol to trace relevant characteristics. Aphasiology, 27,3, 271-292. Schegloff, E.A. (1988) . Discourse as an interactional achievement II: An exercise in conversation analysis. In D. Tanner (Ed.), Linguistics in context: Connecting observation and understanding (pp. 135–158). Norwood, NJ: Ablex. World Health Organization. (2001). International classification of functioning, disability, and health. Retrieved April 30, 2003, from http://www.who.int/gb/EB_WHA/PDF/WHA54/ea5418.pdf Yesavage, J. A., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey,M., & Leirer, V. O. (1983).Development and validation of a geriatric depression rating scale: A preliminary report. Journal of Psychiatric Research, 17, 37–49. Keywords: Aphasia, Group Therapy, Conversational skills, adults population, aphasia therapy Conference: Academy of Aphasia 55th Annual Meeting , Baltimore, United States, 5 Nov - 7 Nov, 2017. Presentation Type: poster presentation Topic: General Submission Citation: Neumann-Werth Y (2019). Investigating the Efficiency of Group Therapy on Improving Conversational Skills in People with Aphasia. Conference Abstract: Academy of Aphasia 55th Annual Meeting . doi: 10.3389/conf.fnhum.2017.223.00043 Copyright: The abstracts in this collection have not been subject to any Frontiers peer review or checks, and are not endorsed by Frontiers. They are made available through the Frontiers publishing platform as a service to conference organizers and presenters. The copyright in the individual abstracts is owned by the author of each abstract or his/her employer unless otherwise stated. Each abstract, as well as the collection of abstracts, are published under a Creative Commons CC-BY 4.0 (attribution) licence (https://creativecommons.org/licenses/by/4.0/) and may thus be reproduced, translated, adapted and be the subject of derivative works provided the authors and Frontiers are attributed. For Frontiers’ terms and conditions please see https://www.frontiersin.org/legal/terms-and-conditions. Received: 03 May 2017; Published Online: 25 Jan 2019. * Correspondence: Dr. Yael Neumann-Werth, Queens College (CUNY), Queens, United States, rodriguez.janice88@gmail.com Login Required This action requires you to be registered with Frontiers and logged in. To register or login click here. 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Communication partner training (CPT) has been used to support communication partners to interact successfully with people with aphasia (PWA). Through successful CPT interaction PWA's accessibility to healthcare is notably improved. The present study sought to build on prior studies by investigating the experiences of individuals with aphasia and healthcare providers to ascertain what they deemed to be beneficial from CPT and what could be refined or improved, dependent on the setting and skill set of those participating. To gain an understanding of the experiences of PWA involved in the provision of CPT to health professional (HP) students. Also to investigate the experiences of HP students who participated in the CPT programme. Eight PWA and 77 HP students who had completed a CPT programme participated in a focus group/semi-structured interview (PWA) and feedback session (HP students) moderated by two speech-language pathologists (SLPs). These sessions were recorded (audio and video), transcribed verbatim, including non-verbal communication, and analyzed using qualitative content analysis. Overall, the study sought to understand experiences of the training. Both the PWA and HP students reported positive experiences of CPT. PWA discussed their perception that CPT improved HPs and HP students' understanding and interactions conversing with them and emphasized the need for training and education for all health related professions. HP students enjoyed the opportunity to experience interacting with PWA, without being 'assessed' and felt it consolidated their learning based on lecture content. Inclusive and accessible healthcare is paramount to ensure the engagement of patients and providers. Based on the experiences and feedback of the participants in this current study, CPT offers a salient and practical training method with potential to improve practice. Participants perceived CPT to be beneficial and validated the need for the training to support PWA accessing healthcare.

Access2Aphasia™ is an iPad™-based aphasia assessment application that enables real-time audiovisual communication between people with aphasia (PWA) and speech-language pathologists (SLPs), and the use of supported conversation techniques. This study aimed to establish the reliability of aphasia assessment across the International Classification of Functioning, Disability and Health (ICF) using Access2Aphasia, and compare it with face-to-face (FTF) assessment. Consumer perspectives of Access2Aphasia were also examined. Thirty PWA were randomized into two conditions: online-led and FTF assessment. Participants in the online-led group were assessed remotely using Access2Aphasia™ in their own homes, while an FTF SLP scored silently simultaneously. Participants in the FTF group were assessed FTF using standard administration materials. Assessment included two subtests of the Psycholinguistic Assessment of Language Processing Activities (PALPA) and the Assessment of Living with Aphasia (ALA) to allow for outcomes to be captured across the ICF domains. Consumer perspectives on Access2Aphasia were obtained from both PWA and research SLPs in the online-led group. Kappa statistics indicated moderate to almost perfect agreement between online and FTF SLPs (k = 0.71-1.00). Intrarater and interrater reliability was excellent (ICC = 0.99-1.00) and equivalent for the online-led and FTF conditions. Both PWA and research SLPs in the online-led group reported being satisfied with the experience overall, with suggestions provided by research SLPs to improve Access2Aphasia. This study supports the provision of iPad-based aphasia assessments across the ICF in the online environment, with comparable reliability to FTF assessments. Future research is warranted to support the development of iPad-based aphasia assessment and treatment as an alternative mode of service delivery to PWA.

Background: A previous systematic review found limited data regarding social participation in working-age people with aphasia (PWA). A review of recent studies may reveal more information on challenges in reestablishing social roles.Method: The aim was to provide an updated systematic review on social participation in PWA under 65 years of age. Studies from 2005 to 2017 were searched from Scopus, Pubmed, and Psychinfo. Search terms were derived from the International Classification of Functioning, Disability and Health (ICF) and the Aphasia- Framework for Outcomes Measures (A-FROM). Aspects of domestic life, interpersonal relations and interactions, education and employment, and community, civic, and social life were investigated.Results: From 2864 initial hits, 11 studies were identified, all of which were on the American Speech-Language-Hearing Association (ASHA) Level III of evidence. The studies indicated that participation in domestic life is reduced and PWA showed reduced social networks, loss of friendships and changes in the quality of marital relations. Few PWA returned to work or spent time on education. Limitations in community, civic, and social life were noted and there were contradictory findings on the impact of contextual factors on social participation. There was an increase in research into contextual factors impacting on social participation in PWA and in the use of conceptual frameworks in the last decade.Conclusions: While the ICF conceptual framework is increasingly used, no studies used the A-FROM. There is greater use of standardized assessments and larger sample sizes.

BACKGROUND: People with Aphasia (PwA) experience detrimental consequences post-stroke which can result in limited opportunities for social engagement and poor psychosocial ramifications. Peer support can improve psychosocial outcomes. Unfortunately, Covid-19 related social restrictions resulted in the closure of social outlets for PwA, further exacerbating social isolation. Some social networks transitioned online during this period. One such network was the Aphasia Café, a social group for PwA, supported by Speech and Language Therapy students (SLTS). OBJECTIVE: This study aimed to investigate the experiences, knowledge, attitudes, and beliefs about the Aphasia Café (in-person and online), within the context of pandemic-related social restrictions, from the perspectives of PwA and the SLTS who support them. METHODS: 16 SLTS participated in one of five focus groups. Six PwA were individually interviewed. Semi-structured questionnaires facilitated inductive and deductive data collection which were analysed using Framework Analysis. RESULTS: Observed themes related to the in-person and online Aphasia Café will be reported in this paper. Overarching themes observed from both SLTS and PwA include: ‘Socialising changes during Covid-19 pandemic’, ‘Awareness and Purpose of the Aphasia Café’, ‘Perceptions of an Online and In-Person Aphasia Café” (subthemes –accessibility, technology, time/timing, non-verbal communication, and social environment), and ‘Optimal Aphasia Café’ (PwA only). CONCLUSIONS: This study provides a unique perspective on the delivery of a supported informal conversation group from both PwA and the SLTS who facilitate it. Both online and in-person social spaces were considered to enhance the quality of life for PwA and give valuable experience for SLTS.

Virtual worlds are used in wide-ranging ways by many people with long-term health conditions, but their use by people with aphasia (PWA) has been limited. In contrast, this article reports the use of EVA Park, a multi-user virtual world designed for PWA to practice conversations, focusing on people's emotional, social, and conversational experiences. An analysis of observation and interview data collected from 20 people with aphasia who participated in a 5-week therapy intervention revealed key themes related to user experience. The themes offer a rich insight into aspects of the virtual world experience for PWA that go beyond therapeutic outcomes. They are as follows: affect (positive and negative); types of conversation, miscommunication, and misunderstanding; immersion in the virtual world; social presence and initiative and flow. Overall, the study showed that participants experienced positive emotional and social outcomes. We argue that this was achieved as a consequence of EVA Park being not only accessible but also a varied and entertaining environment within which PWA experienced both the realistic and the quirky while engaging with others and having fun.

Introduction: Treatment intensity for people with aphasia (PWA) is a significant factor in enhancing recovery. Personal factors such as fatigue, physical endurance, and motivation as well as clinician availability have been described as barriers to increased intensity. The use of student therapists has been shown to assist with addressing service gaps. Methods: The aim of the study was to explore the experiences of PWA who received enhanced community-based treatment delivered by speech-language pathology (SLP) students. Enhanced community-based treatment was defined as three or more treatment sessions per week targeting communication. Semi-structured interviews were conducted with 10 PWA living in New Zealand. Interview data were analysed with reflexive thematic analysis. Results: Two themes and six sub-themes were developed. Theme 1 related to intensity and included more treatment is better than less (sub-theme 1), there’s a “right time” for more intensive treatment (sub-theme 2), the hard work is worth the effort (sub-theme 3). Theme 2 related to working with SLP students; it didn’t feel like they were students (sub-theme 4), we just got on so well (sub-theme 5), and they listened to what I wanted (sub-theme 6). Conclusions: The findings confirm that PWA value access to more intensive treatment and desire involvement in decisions about flexible treatment schedules. PWA have positive experiences when treatment is provided by SLP students. Implications for clinical practice and future research directions are discussed.

Plain English summaryInvolving patients and members of the public to help shape and carry out research is recommended in health research in the United Kingdom (UK). There are a number of regional networks of Patient and Public Involvement (PPI) groups, which support the collaboration between researchers, patients and public members. We are a group of researchers, patients and public members who came together via a PPI regional network in the East of England to collaborate on a research study about the extent of feedback from researchers to PPI contributors.The aim of this paper is to use the recently developed UK National Standards for Public Involvement to structure our thinking about what worked well and what did not, within our recently completed study. We believe this paper is one of the first to use the National Standards to structure a retrospective reflection on PPI within a study.Our findings showed that there are benefits of regional working, including easier access to public members and bringing together researchers, public members and those who run PPI groups for research collaboration. The main challenges included involvement of people before studies are funded and working across organisations with different payment processes.The National Standards for Public Involvement has provided a useful framework to consider how best to involve patients and members of the public in research and could be a helpful structure to reflect on successes and challenges in individual projects and also regional, national or international comparisons of PPI in research.BackgroundRegional networks of Patient and Public Involvement (PPI) organisations, including academic institutions, health and social care services, charities, patient and public groups and individuals, can play an important part in carrying out health research. In the UK, recommendations by the National Institute of Health Research (NIHR) encourage the use of regional, collaborative networks with shared resources and training.MethodsThe newly developed UK National Standards for Public Involvement were used as a framework for a retrospective reflection of PPI within a recently completed research study which focused on feedback from researchers to PPI contributors. PPI contributors, those running PPI groups (PPI leads) and researchers involved in the study have contributed to this reflection by completing evaluation forms throughout the research alongside notes of meetings and co-authors’ final reflections.ResultsResults revealed a number of successes where the regional network was particularly useful in bringing together PPI contributors, those who lead PPI groups and researchers. The regional network helped researchers to get in touch with patients and members of the public. Challenges included involving people before funding and bureaucratic and financial barriers when working across different organisations in the region. The importance of working together in flexible, informal ways was key and on-going support for the PPI contributors was vital for continued involvement, including emotional support not just monetary. The first four National Standards of inclusive opportunities, working together, support and learning and communications were particularly useful as means of structuring our reflections.ConclusionsTo our knowledge, this is one of the first research studies to use the UK National Standards for Public Involvement as a framework to identify what worked well and the challenges of PPI processes. It is suggested that as more reflective papers are published and the National Standards are more widely used in the UK, many lessons can be learnt and shared on how to improve our Patient and Public Involvement within research studies. Evaluations or reflections such as these can further enhance our understanding of PPI with implications for regional, national and international comparisons.

Conversation partner schemes for people with aphasia (PWA) can promote communication and quality of life as well as support skill development for students. Initial evidence indicates online conversation partner formats are acceptable as an alternative to in-person delivery. To evaluate the experiences of PWA of an online conversation partner scheme during the global pandemic. This qualitative study captured the experiences of eight PWA through semi-structured interviews. Reflexive thematic analysis was used to analyse the data and to create themes and subthemes, reflecting the experiences of the participants through the interpretation of the researchers. Two main themes were generated, each with subthemes. The first theme was Communicating and connecting online: 'It was brilliant' with subthemes: 'It help me and I help them': Mutual benefits, 'Straight away I managed to speak': Supported conversations, 'We got to know each other': Connecting, and 'Nine out of ten, easy': Convenient and easy. The second theme was Being me online: lacks 'Je ne sais quoi' with subthemes: 'I like to shake hands': Missing a human connection, 'Show me, me self, myself, my broad Yorkshire coming out': Restricted self-expression, and 'Wetherspoons, Wetherspoons': Loss of the physical environment. This study supports the existing evidence that online conversation partner schemes for PWA are successful. It contributes original ideas relating to the acceptability of technology, interaction and self-expression online for PWA, and considers the benefits of combining both online and face-to-face communication and connection opportunities. What is already known on the subject University conversation partner schemes have been shown to improve the communication skills and confidence of PWA and students. A small body of research has shown that online conversation partner schemes are feasible and can be a positive experience for some, but not all, PWA. What this paper adds to the existing knowledge Participants found that an online conversation partner scheme during the COVID-19 pandemic gave them the opportunity to communicate and connect with students, and led to mutual benefits including enjoyment, improved communication skills, confidence and a sense of purpose. They were able to connect through supported conversations and found it convenient and easy to meet online. Despite these benefits, the participants felt that there was something missing in terms of the human connection, self-expression and the physical environment. What are the potential or actual clinical implications of this work? This study suggests that online conversation partner schemes provide an opportunity for those who are restricted in their ability to meet face to face or would prefer the ease and comfort of staying in their own home. However, some people may face more barriers in meeting online due to limited experience, skills or support with technology, and may find it more difficult to communicate, build a connection and express themselves. Either using a combined approach of online and face-to-face interactions or providing a choice for PWA will ensure that they are still able to access the psychosocial benefits of participating in a conversation partner scheme.

Identifying the long-term needs of stroke survivors and modeling implications for innovative services

ABSTRACTBackground: Creating communication accessible environments is an essential component to facilitating the social inclusion and well-being of people with communication support needs (CSN). However, in Australia, this has yet to translate into legislation, which may be partly due to the relatively small numbers of people if CSN only considers people with a communication disability. Including people from a culturally and linguistically diverse background, significantly increases the size of the cohort that may benefit from communication access legislation.Aims: This study explores whether the face to face experiences of service encounters of people with aphasia (PWA) were similar to speakers of English as an additional language (EAL) in an attempt to highlight the need for government policy to address the needs of a larger cohort of people with a wide range of CSN.Methods & Procedures: Using a qualitative description approach, semi-structured, in-depth interviews were conducted with five PWA and five EAL speakers about their experiences within service interactions. Using this approach, the study explored the key features which were perceived as enabling or constraining communication access. Results are explored against the backdrop of a sociological theoretical conceptual model, drawing from the theories of Pierre Bourdieu and Erving Goffman, to consider a deeper nuanced understanding of the connections between communication access, social capital and social inclusion.Outcome and results: This study suggests that there are shared experiences for PWA and speakers of EAL within service interactions. Although both groups describe many positive experiences, findings indicate that even subtle negative reactions by service providers, in particular non-verbal behaviours, are conceptualised as having a considerable impact on their negotiation of social capital and ultimately social inclusion. This study highlights that a sociological framework, underpinned by the theories of Bourdieu and Goffman appears to be a useful template for researchers to consider when studying the interactions of people with CSN.Conclusion: A wider cohort of people could benefit significantly from policy development which promotes communication access in everyday service encounters. People with disability are being encouraged to have a voice and people from different cultures are being encouraged to settle into Australian society, so it is essential to understand the everyday experience of communication access. This study has facilitated a more in–depth theoretical understanding of the multidimensional concept of communication access and the significant implications for well-being, social integration and social inclusion currently under recognised within government legislation.

PARE0021 Public and patient involvement at arthritis research uk: ensuring benefit for all

Background Aphasia has far-reaching effects on both the affected individuals and their surroundings. In 2001, the World Health Organization (WHO) introduced the International Classification of Functioning (ICF) model, which includes the concept of “third-party disability”, highlighting the challenges faced by healthy partners when their significant others have a medical condition. Despite family members expressing a willingness to engage in rehabilitation, healthcare professionals often overlook their negative emotions. Aim & Methods This study explores the impact of aphasia on spouses of people with aphasia (PWA). Using mixed methods, it involved 30 spouses who completed the Family Aphasia Measure of Life Impact questionnaire (FAMLI. Grawburg et al. 2019), assessing the healthy partner’s functioning concerning the PWA. Additionally, 12 spouses from the same group participated in in-depth interviews about their lives before the stroke, their experiences during it, and life alongside aphasia. Results The FAMLI questionnaire revealed notably low scores in four of five categories: health and daily life, helping others, communication and emotion and outside influences and interactions. However, the attitudes and personal life category yielded a positive score. The communication and emotion category had the most pronounced negative impact, a finding supported and enhanced by the interviews. Challenges included an overwhelming sense of burden and profound loss within marital relationships. Conclusion Spouses of PWA face an emotionally taxing journey, with communication impairment reshaping marital dynamics. Speech-language pathologists should play a role in restoring effective communication. Addressing spouses’ unique needs should be a research and clinical priority.

BackgroundRather than being perceived as merely ‘part of the problem’, the perspectives and experiences of young people play a pivotal role in devising effective solutions for mental health challenges. Two distinct methodologies that aid in this endeavour are ‘patient and public involvement’ (PPI) and ‘responsible research and innovation’ (RRI). However, there is a tendency to conflate PPI and RRI practices, leading to ambiguity in their application. Moreover, the extent and nature of young people’s involvement in mental health-related projects (namely: research, intervention, product development) employing these methodologies, and the subsequent implications thereof, remain unclear. Consequently, the proposed scoping review aims to identify and analyse literature pertaining to PPI and RRI approaches in mental health projects that engage young people in collaboration.MethodsThe selected databases will be MEDLINE, PsycINFO, PsycArticles, Scopus, Web of Science, IBBS, CINAHL (EBSCO) and ASSIA. Comprehensive searches will span from the inception of each database. A pilot test will be conducted to assess the screening criteria and data extraction form, with two authors independently reviewing titles and abstracts. Full-text articles meeting the inclusion criteria will undergo narrative syntheses, with results presented in tabular format. Feedback on the findings from a youth perspective will be sought from young people within our broader research network, namely Sprouting Minds. The review will adhere to the guidelines outlined by the Joanna Briggs Institute (JBI) and follow the PRISMA-ScR procedures. Inclusion criteria will comprise English-language, primary research peer-reviewed articles focused on Patient and Public Involvement (PPI) or Responsible Research and Innovation (RRI), examining mental health-related research processes, interventions, and products developed in collaboration with young people. Studies employing quantitative, qualitative, and mixed-methods approaches will be considered, while non-journal publications will be excluded.DiscussionThe intended scoping review aims to map the literature concerning mental health-related projects that engage with young people through PPI or RRI approaches. The outcomes hold promise for enriching the participatory research domain, particularly in studies centred on young people and their mental well-being. Furthermore, by delineating potential overlaps and distinctions between PPI and RRI, the findings stand to aid mental health researchers and practitioners in making informed decisions about the most suitable approach for their projects when partnering with young individuals.Systematic review registrationOpen Science Framework (registration: DOI https://doi.org/10.17605/OSF.IO/N4EDB).