The importance of SDG 17 and equitable partnerships in maximising participation of persons with communication disabilities and their families.

BACKGROUND: Equitable partnerships across borders, sectors and communities are integral in creating shared understanding, novel solutions and sustainable development. Sustainable development goal (SDG) 17: Partnerships for goals, focuses on strengthening global partnerships. This highlights the importance of partnership as a tool to support the achievement of all SDGs. Partnerships are particularly vital to creating sustainable and appropriate services to support people who experience communication or swallowing disability and their families, in under-served communities, where services and expert personnel may be limited and where innovative strategies are required for working with families and communities to improve service accessibility. PURPOSE: To reflect on key principles underpinning the creation of a speech-language pathologists' (SLPs') community of practice, designed to support SLPs from high-, low- and middle-income countries to develop equitable partnerships, aimed at supporting people who experience communication or swallowing disability their families. RESULT: We draw on the authors' experiences of building partnerships to enhance participation for people who experience communication or swallowing disability. We discuss the need for global partnerships and challenges with current funding mechanisms. CONCLUSION: We use the principles of the speech-language pathology community of practice and concepts from the Partnership Accelerator 2030 Agenda to frame reflections and recommendations. This commentary paper focuses on partnerships for the goals (SDG 17).

Stitching a new garment: Considering the future of the speech-language therapy profession globally.

Providing equitable support for people experiencing communication disability (CD) globally is a historical and contemporary challenge for the speech-language therapy profession. A group of speech-language therapists (SLTs) with ongoing and sustained experiences in Majority and Minority World contexts participated in five virtual meetings in 2021. The aim of these meetings was to develop provocative statements that might spur a global discussion among individuals and organisations that support people experiencing CD. The following questions were discussed: What is our vision for the future of the profession globally? What are the global challenges around access to speech-language therapy services?Four main themes emerged: (1) the need to centre people experiencing CD as the focal point of services, (2) participation, (3) equity and (4) community. The themes relate to the need for a process of de-imperialism in the profession. Suggestions were made to develop more suitable terminology and to establish a global framework that promotes more equitable access to communication services. We seek the adoption of approaches that focus on reciprocal global engagement for capacity strengthening. Alternative models of culturally sustaining and equitable service delivery are needed to create impact for people experiencing CD, and their families worldwide.Contribution: Provocative statements were developed to prompt global conversations among speech-language therapy professionals and associations. We encourage readers to consider the questions posed, share their viewpoints and initiate positive change towards a global strategy.

The congressionally directed medical research programs' Ovarian Cancer Academy: a new approach to training in biomedical research.

Introduction: Researchers have begun to change their approach to training in the biomedical sciences through the development of communities of practice (CoPs). CoPs share knowledge across clinical and laboratory contexts to promote the progress of clinical and translational science. The Congressionally Directed Medical Research Programs' (CDMRP) Ovarian Cancer Academy (OCA) was designed as a virtual CoP to promote interactions among early career investigators (ECIs) and their mentors with the goal of eliminating ovarian cancer. Methods: A mixed-methods approach (surveys and interviews) was used to evaluate the effectiveness of the OCA for the eight ECIs and five mentors. Quantitative analysis included internal reliability of scales and descriptive statistics for each measure, as well as paired sample t-tests for Time 1 and Time 2. Qualitative data were analyzed for themes to discern which aspects of the program were useful and where more attention is needed. Results: Preliminary analyses reveal several trends, including the importance of training in grant writing to the ECI's productivity, as well as the value of peer mentorship. Conclusion: The results show that the OCA was an innovative and effective way to create a CoP with broad implications for the field of ovarian cancer research, as well as for the future of biomedical research training.

Barriers and Facilitators to Conversation: A Qualitative Exploration of the Experiences of People with Parkinson's and Their Close Communication Partners.

Conversations are an important part of our daily lives, enabling us to interact with others and participate in a range of activities. For people with Parkinson's, conversation can be challenging when communication is impacted. This qualitative exploratory study investigated the experiences of people with Parkinson's and their close communication partners in conversations. The study explored influences on conversational participation, considering perceived barriers and facilitators to participation in conversation for people with Parkinson's. Interviews were conducted with eight dyads, with participants interviewed both jointly and separately (24 interviews). Five themes revealed that conversation appears to be influenced not only by the communication skills of the person with Parkinson's, but also by factors associated with the communication partner, the complex nature of conversations, the communication environment, and the impact of experience in shaping participation in conversation. Specific barriers and facilitators to conversational participation were identified. This study offers important insight into the lived experience of people with Parkinson's affected by communication difficulties. The findings support the notion that it is more than simply the communication skills of the person with Parkinson's that influence conversations. It is important that other factors influencing conversational success should be included in interventions supporting communication for people with Parkinson's.

Communication strategies used by Parkinson's nurse specialists during healthcare interactions: A qualitative descriptive study.

AIM: To explore the range and use of communication strategies by Parkinson's nurse specialists, and describe key communication strategies, to support health professionals in their healthcare interactions with people with Parkinson's. DESIGN: A qualitative descriptive study. METHODS: Due to the COVID-19 pandemic, the study took place in an online setting. Online semi-structured interviews were conducted with eight Australian Parkinson's nurse specialists and one UK Parkinson's nurse between August and October of 2020. Interviews explored healthcare communication, specifically (1) ways Parkinson's nurse specialists support communication during healthcare interactions, (2) factors influencing the use of communication strategies, and (3) how the nurses learned to communicate effectively with people with Parkinson's disease. Reflexive thematic analysis was used to analyse the data. RESULTS: Parkinson's nurse specialists described the importance of establishing strong therapeutic relationships, the key role of the communication partner, adapting communication to reduce cognitive load, ensuring two-way understanding, and enabling expressive communication for people with Parkinson's. Knowing the person and family, knowing the disease and understanding the symptoms appeared to influence the choice of communication strategies in healthcare interactions. Learning through others, learning through experience and learning through education and research were considered important parts of becoming a skilled healthcare communicator when working with people with Parkinson's. CONCLUSION: Knowledge and use of effective communication strategies to support people with Parkinson's is crucial for all health professionals working with this population, in order to reduce the occurrence of poor healthcare outcomes. A deep understanding of how Parkinson's disease affects communication and experience in implementing communication strategies were reported as contributing to the success of Parkinson's nurses in communicating with their patients. IMPACT: This study provides a description of the key, translational communication strategies that can be used by all health professionals to support healthcare interactions with people with Parkinson's.

Community service providers' roles in supporting communication disability rehabilitation in Majority World contexts: An example from Ghana.

Purpose: In Majority World countries, where speech-language pathology services are extremely limited, people with communication disabilities (PWCD) may seek help from a range of service providers. This qualitative research aimed to explore the nature of community services offered to people with communication disabilities who seek help in Accra, Ghana.Method: Semi-structured interviews were conducted with nine individuals from three professions: pastors (3), doctors (3), and herbalists (3) exploring services that they may offer to PWCD seeking help. Interviews were analysed using Thematic Network Analysis.Result: Six global themes described beliefs about communication disability, types of intervention, explanations provided to people with communication disabilities, promoting communication, processes for selecting treatments, and links between service providers. Interventions encompassed physical, spiritual, psychosocial and environmental approaches, with the notion of plural beliefs interwoven through a number of themes.Conclusion: In Ghana, and other Majority World contexts, service providers in sectors not commonly associated with communication disability rehabilitation may have important roles to play in supporting people with communication disabilities. Understanding the contributions of other service providers may assist the growing profession of speech-language pathology to collaborate across sectors, to develop specific, culturally responsive approaches to service development.

Communication rehabilitation in sub-Saharan Africa: The role of speech and language therapists.

BACKGROUND: Workforce factors present a significant barrier to the development of rehabilitation services for people with communication disabilities in sub-Saharan Africa (SSA). Exploring how the work of speech and language therapists (SLTs) in the region is organised and delivered can provide insight into existing services, areas for future workforce development and improved rehabilitation access for people with communication disability. OBJECTIVES: This paper describes the employment and service provision patterns and work roles of a sample of SLTs in SSA. METHOD: A broad, purpose-designed, mixed-methods survey was designed to collect data from SLTs living in Anglophone countries of SSA. Descriptive statistics and qualitative content analysis were undertaken. This paper reports on a subset of data from the wider survey. RESULTS: A description of the employment and work roles of the 33 respondents to the survey and characteristics of their service users is presented. SLTs were commonly employed within private and not-for-profit sectors and frequently worked in temporary jobs. SLTs engaged in a range of work roles, including capacity building and training others. Services were provided by SLTs across age ranges, health conditions and settings, with paediatric, urban services commonly reported. Costs for service users and urban-centred services give indications of barriers to service access. CONCLUSION: Knowledge of the way in which speech and language therapy services are organised and provided has the potential to shape the development of communication disability rehabilitation in SSA. This research has identified a range of issues requiring consideration as the profession develops and grows.

Self-help and help-seeking for communication disability in Ghana: implications for the development of communication disability rehabilitation services.

BACKGROUND: In low and middle-income countries, such as Ghana, communication disability is poorly recognised and rehabilitation services for people with communication disability are limited. As rehabilitation services for communication disability develop, and the profession of speech-language pathology grows, it is important to consider how services can most appropriately respond to the needs and preferences of the community. Understanding the ways in which people currently self-help and seek help for communication disability is central to developing services that build on existing local practices and are relevant to the community. METHODS: A qualitative descriptive survey was used to explore likely self-help and help-seeking behaviours for communication disability, in Accra, Ghana. The survey required participants to describe responses to hypothetical scenarios related to communication disability. A mix of theoretical sampling and convenience sampling was used. Qualitative content analysis was used to analyse data and develop categories and subcategories of reported self-help behaviours and sources of help and advice for communication disability. RESULTS: One hundred and thirty-six participants completed the survey. Results indicated that community members would be likely to engage in a variety self-help strategies in response to communication disability. These included working directly with a person with a communication disability to attempt to remediate a communication impairment, altering physical and communication environments, changing attitudes or care practices, educating themselves about the communication disability, providing resources, and responding in spiritual ways. Participants indicated that they would seek help for communication disability across a range of sectors - including the Western healthcare, religious, and traditional sectors. CONCLUSIONS: Understanding existing community actions to self-help and help-seek may allow emerging communication rehabilitation services, including the profession of speech-language pathology, to build on existing community practices in resource-limited contexts such as Ghana.

Communication rehabilitation in sub-Saharan Africa: A workforce profile of speech and language therapists.

BACKGROUND: There is an urgent global need to strengthen rehabilitation services for people with disabilities. In sub-Saharan Africa, rehabilitation services for people with communication disabilities continue to be underdeveloped. A first step in strengthening services for people with a communication disabilities is to understand the composition and conditions of the current workforce. OBJECTIVES: This research describes a sample of the speech and language therapists (SLTs) working in SSA (excluding South Africa). This study explores the characteristics of this workforce, including their demographics, education, experience and geographical stability. METHOD: A mixed-methods survey was used to collect data from SLTs within Anglophone countries of SSA. Completed surveys were received from 33 respondents working in 44 jobs across nine countries. Analysis included descriptive and non-parametric inferential statistics. This study reports on a subset of descriptive and quantitative data from the wider survey. RESULTS: A background profile of SLTs across the region is presented. Results indicated that the workforce of SLTs comprised a mix of local and international SLTs, with university-level education. Local SLTs were educated both within and outside of Africa, with more recent graduates trained in Africa. These data reflected the local emergence of speech and language therapy training in SSA. CONCLUSION: This sample comprised a mix of African and international SLTs, with indications of growing localisation of the workforce. Workforce localisation offers potential advantages of linguistic diversity and stability. Challenges including workforce support and developing culturally and contextually relevant SLT practices are discussed.

Identification of a polyomavirus microRNA highly expressed in tumors.

Polyomaviruses (PyVs) are associated with tumors including Merkel cell carcinoma (MCC). Several PyVs encode microRNAs (miRNAs) but to date no abundant PyV miRNAs have been reported in tumors. To better understand the function of the Merkel cell PyV (MCPyV) miRNA, we examined phylogenetically-related viruses for miRNA expression. We show that two primate PyVs and the more distantly-related raccoon PyV (RacPyV) encode miRNAs that share genomic position and partial sequence identity with MCPyV miRNAs. Unlike MCPyV miRNA in MCC, RacPyV miRNA is highly abundant in raccoon tumors. RacPyV miRNA negatively regulates reporters of early viral (T antigen) transcripts, yet robust viral miRNA expression is tolerated in tumors. We also identify raccoon miRNAs expressed in RacPyV-associated neuroglial brain tumors, including several likely oncogenic miRNAs (oncomiRs). This work describes the first PyV miRNA abundantly expressed in tumors and is consistent with a possible role for both host and viral miRNAs in RacPyV-associated tumors.

Adopting public health approaches to communication disability: challenges for the education of speech-language pathologists.

Public health approaches to communication disability challenge the profession of speech-language pathology (SLP) to reconsider both frames of reference for practice and models of education. This paper reviews the impetus for public health approaches to communication disability and considers how public health is, and could be, incorporated into SLP education, both now and in the future. The paper describes tensions between clinical services, which have become increasingly specialized, and public health approaches that offer a broader view of communication disability and communication disability prevention. It presents a discussion of these tensions and asserts that public health approaches to communication are themselves a specialist field, requiring specific knowledge and skills. The authors suggest the use of the term 'communication disability public health' to refer to this type of work and offer a preliminary definition in order to advance discussion. Examples from three countries are provided of how some SLP degree programmes are integrating public health into the SLP curriculum. Alternative models of training for communication disability public health that may be relevant in the future in different contexts and countries are presented, prompting the SLP profession to consider whether communication disability public health is a field of practice for speech-language pathologists or whether it has broader workforce implications. The paper concludes with some suggestions for the future which may advance thinking, research and practice in communication disability public health.

Changing practice: implications of the World Report on Disability for responding to communication disability in under-served populations.

The World Report on Disability provides a major challenge to the conceptualization and delivery of services for people with communication disabilities around the world. Many people, in both Majority and Minority World countries, receive limited or no support in relation to their communication disability. In this paper the prevalence of communication disability across the world (and the challenges to obtaining these data) are discussed, particularly in relation to disability more broadly. Populations that are under-served by speech-language pathology services in both Majority and Minority World countries are described. The paper describes organizational change theory and the potential it has, together with a biopsychosocial model of disability, to assist in understanding and influencing development of relevant services for people with communication disabilities (PWCD), particularly those who are under-served. Aspects of, and influences on, service delivery for PWCD are described. The need for novel ways of conceptualizing development of services, including population-based approaches, is highlighted. Finally, the challenges and opportunities for PWCD and for speech-language pathologists which arise from the nine recommendations of the World Report on Disability are considered and readers are encouraged to consider new and novel ways of developing equitable services for people with communication disabilities, in both majority and minority world settings.

The World Report on Disability: an impetus to reconceptualize services for people with communication disability.

Challenges to the conceptualization and delivery of services for people with communication disabilities (PWCD) have been described in the lead article in this issue, which was itself a response to the World Report on Disability. A number of commentaries followed the lead article, where authors from around the world responded to the lead article (Wylie, McAllister, Davidson & Marshall, 2013), and the World Report on Disability. This paper synthesizes the issues, ideas, and challenges raised in the preceding commentaries. This has been done by addressing each of the four key issues posed in the lead article. A number of proposals for better responding to the needs of PWCD are outlined. These include: engaging with the collection of epidemiological data, consideration of which PWCD are under-served and how this may be changed, the use of documentation, adoption of new roles and strategies for speech-language pathologists, the challenges of community-directed vs individually-focused approaches, and the suggestion of public health communication disability workers and mid-tier workers, who could work alongside more traditional speech-language pathologists.