Communication partner training for healthcare workers engaging with people with aphasia: Enacting Sustainable Development Goal 17 in Austria, Egypt, Greece, India and Serbia.

PURPOSE: This commentary describes how a grassroot-led partnership initiated by members of the organisations World Federation of NeuroRehabilitation and Collaboration of Aphasia Trialists is addressing the marginalisation of people with aphasia, through education and knowledge exchange related to communication partner training of health professionals. RESULT: A partnership between academics and healthcare professionals across Austria, Denmark, Egypt, Ireland, Greece, India, Serbia and the United Kingdom was established in 2020. Through bimonthly online sessions in 2021-2022 a Danish communication partner training program was introduced while six teams adapted and translated the training and its materials to their local contexts. CONCLUSION: A collaborative partnership enabled multiple translations of an existing communication partner training program for healthcare professionals working with people with aphasia to support a sustainable delivery model that is linguistic and culturally sensitive. This commentary paper focusses on Sustainable Development Goal (SDG) 17 and also addresses SDG 10.

Restricted participation: Drivers, experiences and implications of disability stigma in Ethiopia.

Background: Community-based inclusive development (CBID) acknowledges society's critical role in supporting the active participation of persons with disabilities. However, research on how this approach relates to the context-sensitive socially situated barriers of disability stigma is underexplored. Objectives: This study aimed to understand the drivers and experiences of disability stigma in Ethiopia, from the perspective of persons with disabilities engaged in CBID programmes, and to establish how disability stigma acts as a barrier to participation. Methods: An inductive methodological approach guided the research design. Mixed methods were used including a narrative review of disabilities studies literature, 16 semi-structured interviews with persons with disabilities, and a quantitative survey of 970 persons with disabilities across three communities in Ethiopia. Results: Informed by theories of epistemic justice, this study identified specific indicators of meaningful participation and examined how these relate to experiences of disability stigma. The study found that the participation of adults with disabilities in society is restricted across different areas of life. Misconceptions about the causes of disability and social perceptions regarding the capacities of persons with disabilities are found to exacerbate stigma and act as a barrier to participation. Conclusion: Targeted efforts to challenge internalised norms and harmful beliefs within CBID approaches are required to address disadvantages arising from embedded disability stigma. Contribution: This study makes conceptual, empirical and practical contributions that advance insights into the relationship between disability stigma and participation in Ethiopia and the dimensions of epistemic justice relevant to understanding the nature and drivers of disability stigma.

Interpersonal violence experienced by people with communication disabilities in Iraq: Sustainable Development Goals 16 and 5.

PURPOSE: This paper presents an analysis of interpersonal identity-based violence experienced by persons with communication disabilities in Iraq and the barriers reported to accessing supports. The use of communication accessible data collection tools is discussed as a means of enabling an inclusive response for multiple marginalised groups in relation to Sustainable Development Goals (SDGs) 16 and 5. RESULT: People with communication disabilities reported similar levels of interpersonal violence to those with disabilities of other types, characterised by high rates of deprivation and physical violence. Many participants did not seek support, but those that did were most likely to speak to a family member or friend, followed by consulting legal services. Barriers to accessing support were varied, with lack of transport being the most commonly reported. Satisfaction with research communication supports was high for all participants, including those with no communication difficulties, suggesting that the resources invested in communication access have benefits beyond those with communication disabilities. CONCLUSION: Iraqi persons with communication disabilities, like those with other disabilities, face high levels of interpersonal violence. The use of communication supports in research addressing disability is likely to increase the representation of persons with communication disability in study samples and can benefit participants with other disabilities. This commentary paper, available in Arabic as a supplemental file, focusses on SDG 16 and also addresses SDG 5.

Communicating accessible messages for food insecure communities in Northern Mozambique: Supporting Sustainable Development Goal 2.

PURPOSE: This paper describes a collaborative project between Trinity College Dublin in Ireland and the United Nations' World Food Programme (WFP) Mozambique country office. The Sphere standards require that information on humanitarian assistance should be in languages and formats accessible to people who cannot read or who have communication difficulties. Nevertheless, there remains a gap in both implementing this guidance consistently and in understanding the impact of doing so when engaging with affected populations. METHOD: This commentary describes the process of developing key messages regarding targeting of humanitarian food assistance in communication-accessible formats, and field testing of these materials with community committees and partners. RESULT: The communication-accessible materials were well received by communities, and humanitarian staff and partners found them to be useful in community engagement. CONCLUSION: Materials designed to be maximally accessible to people with communication differences and disabilities may also address inclusion for affected populations with different education, literacy, and language backgrounds. This commentary focuses on Sustainable Development Goal (SDG) 2 as an exemplar of the use of communication accessible messaging in humanitarian response.

Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A protocol for a realist review.

Background: Stroke acquired communication impairments impede effective communication. Consequently, in stroke care, communicative interactions can be challenging for both patients and staff and can predispose patients to increased risk of preventable adverse events. Communication partner training (CPT) can mitigate such negative outcomes by optimising communicative interactions. Providing CPT to student health and social care professionals (SH&SCPs) has the potential to enhance their clinical expertise and experiences and enhance the future clinical care of patients with stroke acquired communication impairments. This research aims to expand our understanding of how CPT is operationalised for SH&SCPs in higher education institutions and determine: what works; for whom; in what contexts; how and why? Methods: This review is Phase 1 of a research project employing a realist approach with public and patient involvement (PPI). It incorporates five iterative steps: 1.) Clarifying the scope; 2.) Searching for evidence; 3.) Selecting and appraising evidence; 4.) Data extraction; 5.) Synthesising data and developing a middle range theory explaining how CPT is expected to work for SH&SCPs. An advisory panel, including PPI advisors, content advisors, student advisors, realist advisors and educationalist advisor has been set up to consult throughout the review and collaboratively agree the middle range theory. Discussion: While there is an evolving evidence base for CPT, including stroke specific CPT for SH&SCPs, it is acknowledged that there are challenges to its implementation in complex real-world settings. In combining empirical evidence with theoretical understanding, realist review permits synthesis of data from diverse sources and goes beyond determining efficacy to explore generative causation and solutions for real world practice. A middle range realist programme theory that coherently explains how CPT is expected to work when teaching SH&SCPs to communicate with people with stroke acquired communication impairments will provide educators with new insights into CPT development and implementation in their higher education institutions.

Video Relay Interpretation and Overcoming Barriers in Health Care for Deaf Users: Scoping Review.

BACKGROUND: Persons who are deaf are more likely to avoid health care providers than those who can hear, partially because of the lack of means of communication with these providers and the dearth of available interpreters. The use of video remote interpretation, namely the video camera on an electronic device, to connect deaf patients and health providers has rapidly expanded owing to its flexibility and advantageous cost compared with in-person sign language interpretation. Thus, we need to learn more about how this technology could effectively engage with and respond to the priorities of its users. OBJECTIVE: We aimed to identify existing evidence regarding the use of video remote interpretation (VRI) in health care settings and to assess whether VRI technology can enable deaf users to overcome barriers to interpretation and improve communication outcomes between them and health care personnel. METHODS: We conducted a search in 7 medical research databases (including MEDLINE, Web of Science, Embase, and Google Scholar) from 2006 including bibliographies and citations of relevant papers. The searches included articles in English, Spanish, and French. The eligibility criteria for study selection included original articles on the use of VRI for deaf or hard of hearing (DHH) sign language users for, or within, health care. RESULTS: From the original 176 articles identified, 120 were eliminated after reading the article title and abstract, and 41 articles were excluded after they were fully read. In total, 15 articles were included in this study: 4 studies were literature reviews, 4 were surveys, 3 were qualitative studies, and 1 was a mixed methods study that combined qualitative and quantitative data, 1 brief communication, 1 quality improvement report, and 1 secondary analysis. In this scoping review, we identified a knowledge gap regarding the quality of interpretation and training in sign language interpretation for health care. It also shows that this area is underresearched, and evidence is scant. All evidence came from high-income countries, which is particularly problematic given that most DHH persons live in low- and middle-income countries. CONCLUSIONS: Furthering our understanding of the use of VRI technology is pertinent and relevant. The available literature shows that VRI may enable deaf users to overcome interpretation barriers and can potentially improve communication outcomes between them and health personnel within health care services. For VRI to be acceptable, sign language users require a VRI system supported by devices with large screens and a reliable internet connection, as well as qualified interpreters trained on medical interpretation.

Disability Data Collection in a Complex Humanitarian Organisation: Lessons from a Realist Evaluation.

In recent years, global attention to disability inclusion in humanitarian and development contexts, notably comprising disability inclusion within the Sustainable Development Goals, has significantly increased. As a result, UN agencies and programmes are increasingly seeking to understand and increase the extent to which persons with disabilities are accounted for and included in their efforts to provide life-saving assistance. To explore the effects and effectiveness of such measurement, this paper applies a complexity-informed, realist evaluation methodology to a case study of a single measurement intervention. This intervention, 'A9', was the first indicator designed to measure the number of persons with disabilities assisted annually by the United Nations World Food Programme (WFP). Realist logic of analysis combined with complexity theory was employed to generate context-mechanism-outcome configurations (CMOC's) against which primary interviews and secondary data were analysed. We show that within the complexity of the WFP system, the roll-out of the A9 measurement intervention generated delayed, counter-intuitive and unanticipated effects. In turn, path dependency and emergent behaviours meant that the intervention mechanisms of yesterday were destined to become the implementation context of tomorrow. These findings challenge the current reliance on quantitative data within humanitarian-development disability inclusion efforts and contribute to our understanding of how data can best be leveraged to support inclusion in such contexts.

Direct participation of people with communication disabilities in research on poverty and disabilities in low and middle income countries: A critical review.

INTRODUCTION: An estimated 1 billion people with disabilities live in low and middle income countries, a population that includes people with communication disabilities (PwCD). PwCD are a heterogenous group with a wide range of abilities who may be underrepresented in research due to the communication demands involved in research participation. METHODS: A critical analysis of 145 studies from a previously published systematic review was undertaken with the aim of documenting the opportunities for direct participation of PwCD in research on poverty and disability in low- and middle- income countries. RESULTS: The key finding was the high risk of underrepresentation of PwCD in research on poverty and disability in LMICs, despite low rates of explicit exclusion (n = 8; 5.5%). A total of 366 uses of data collection tools were analysed (255 unique tools). The majority of data collection tools had high communication demands (92.9%), including those measuring disability (88.6%) and those assessing poverty (100%). Only 22 studies (15.2%) specifically included PwCD. A subset of these studies (n = 14) presented disaggregated data in a way that allowed for analysis of outcomes for PwCD, suggesting a clear intersection between poverty and communication disability, with findings related to general poverty indicators, reduced access to education, low levels of employment, and additional expenditure. CONCLUSIONS: The findings suggest a systematic underrepresentation of PwCD in research on poverty and disability with substantial implications for future policy and program planning, directly affecting the availability and provision of services and resources for this population. A failure to provide adequate opportunity for participation of PwCD in research risks leaving those with communication disabilities behind in the pursuit of global poverty eradication.

Mutual (Mis)understanding: Reframing Autistic Pragmatic "Impairments" Using Relevance Theory.

A central diagnostic and anecdotal feature of autism is difficulty with social communication. We take the position that communication is a two-way, intersubjective phenomenon-as described by the double empathy problem-and offer up relevance theory (a cognitive account of utterance interpretation) as a means of explaining such communication difficulties. Based on a set of proposed heuristics for successful and rapid interpretation of intended meaning, relevance theory positions communication as contingent on shared-and, importantly, mutually recognized-"relevance." Given that autistic and non-autistic people may have sometimes markedly different embodied experiences of the world, we argue that what is most salient to each interlocutor may be mismatched. Relevance theory would predict that where this salient information is not (mutually) recognized or adjusted for, mutual understanding may be more effortful to achieve. This paper presents the findings from a small-scale, linguistic ethnographic study of autistic communication featuring eight core autistic participants. Each core autistic participant engaged in three naturalistic conversations around the topic of loneliness with: (1) a familiar, chosen conversation partner; (2) a non-autistic stranger and (3) an autistic stranger. Relevance theory is utilized as a frame for the linguistic analysis of the interactions. Mutual understanding was unexpectedly high across all types of conversation pairings. In conversations involving two autistic participants, flow, rapport and intersubjective attunement were significantly increased and in three instances, autistic interlocutors appeared to experience improvements in their individual communicative competence contrasted with their other conversations. The findings have the potential to guide future thinking about how, in practical terms, communication between autistic and non-autistic people in both personal and public settings might be improved.

Systematic Review of Training Communication Partners of Chinese-speaking Persons With Aphasia.

OBJECTIVE: To determine the aims, participants, and outcomes of training communication partners of Chinese-speaking persons with aphasia (PWA). DATA SOURCES: Sixty search terms related to communication partner training (CPT) in Chinese characters were searched in 8 electronic databases (published 1991-2020). STUDY SELECTION: Journal articles written in Chinese that primarily target the Chinese audience and university theses were selected for review. Studies involving CPT and training to enable communication partner to deliver language tasks were included, but reports without PWA or direct training of communication partners were excluded. A final corpus of 37 articles, representing publications of group studies, case studies, qualitative studies, and opinion articles, were selected for full review. DATA EXTRACTION: For all articles, 2 reviewers independently reviewed abstracts, excluding those without PWA or those that did not involve training of communication partners. One reviewer extracted descriptive data of participants with aphasia, communication partners, intervention details of the intervention (purpose, amount, setting, description), outcome measures, results, and clinical guidelines. A second reviewer performed accuracy verifications. DATA SYNTHESIS: Quality of reviewed articles were classified using the American Academy of Neurology levels of evidence. The current review suggested an evidence base of low to medium quality supporting 2 intervention groups: (1) training partners to deliver therapy tasks and (2) training to improve communication between PWA and their communication partners. There was a higher proportion of persons with acute and subacute aphasia involved in these investigations, suggesting evidence on treatment efficacy of CPT in the acute stage. CONCLUSIONS: Additional high-quality research with a better methodological quality, for example, randomized controlled trials or experimental design, are required to strengthen the current evidence of CPT. This systematic review suggests that the inclusion of studies published in languages other than English may influence the findings of mainstream reviews relating to aphasia.

Use of diverse diagnostic criteria for acquired apraxia of speech: a scoping review.

BACKGROUND: There is a growing body of evidence that speech and language therapy (SLT) intervention is effective in improving communication ability for individuals with non-progressive acquired apraxia of speech (AOS). However, there is no universally agreed diagnostic standard for AOS, and diverging opinions on its diagnostic features. This has led to claims that diverse diagnostic criteria may be used to select participants for AOS research studies. These claims raise concerns for evidence-based practice in AOS but have yet to be systematically investigated. AIMS: To determine the presence, nature and extent of diversity in the diagnostic criteria for non-progressive AOS used in both published studies and clinical practice internationally. METHODS & PROCEDURES: The study used a scoping review methodology that followed the 2005 framework of Arksey and O'Malley and included a consultation exercise in the form of an online survey of international SLTs. The scoping review included 157 studies involving participants with acquired AOS, published between 1997 and 2017. There were 264 respondents to the online survey of SLTs, with a completion rate of 72%. Respondents came from 15 countries and had varying levels of clinical experience. MAIN CONTRIBUTION: This study found that no common set of diagnostic criteria for AOS was used universally across research and practice. Although the diagnostic criteria used to select participants with AOS were reported explicitly in most studies, they varied from study to study. Some studies used directly conflicting criteria. Use of specific diagnostic criteria in studies was influenced by year of publication but not by location. There was a trend towards increasing consistency in diagnostic criteria in recent years. Compared with the research, the survey revealed relatively greater consistency among SLTs on the speech features considered indicative of AOS, although the SLTs who responded to the survey showed variation in how diagnostic criteria were combined into sets. Use of specific diagnostic criteria was not associated with SLTs' location or experience. There were differences between the diagnostic criteria for AOS used most commonly in research studies and those selected most commonly by SLTs in the survey. These findings have implications for the generalizability of AOS research to clinical practice, as well as implications for effective research synthesis. CONCLUSIONS & IMPLICATIONS: The claim that research and practice in the field of AOS is characterized by the use of diverse diagnostic criteria is supported by this scoping review. The findings support the need to develop a universal consensus standard for AOS diagnosis to ensure consistency across research and clinical practice.