Severe Communication Disabilities Research Articles

Machine learning for predictive AAC: Improving speech and gesture-based communication systems

Augmentative and alternative communication (AAC) systems play a crucial role in supporting individuals with severe communication disabilities by providing accessible means of expression and engagement. However, many conventional AAC devices rely on manual input or basic predictive functions, which can limit communication efficiency and responsiveness. The application of machine learning (ML) to AAC offers new opportunities to enhance these systems, enabling them to provide faster, more accurate, and contextually relevant communication assistance. Advances in ML, particularly in predictive text, speech recognition, and gesture interpretation, allow AAC systems to adapt more intuitively to user needs, predicting intent based on usage patterns and multimodal data, such as voice and gestures. Current research highlights the potential of ML to address key gaps in AAC technology by creating more responsive, personalized systems that align with individual user behaviours. This study proposes a novel ML framework designed to integrate these capabilities, promising improvements in communication speed, user autonomy, and accuracy. By addressing the challenges and limitations of traditional AAC devices, this research aims to advance accessible communication solutions that empower users and improve quality of life.

'Patient unable to express why he was on the floor, he has aphasia.' A content thematic analysis of medical records and incident reports on the falls of hospital patients with communication disability following stroke.

People with communication disability following stroke are at risk of falls during inpatient rehabilitation. However, they are often excluded from hospital falls research, and little is known about the circumstances or outcomes of their falls to inform risk management strategies. To examine hospital medical records and incident reports relating to falls of patients with communication disability following stroke for content codes, categories and themes relating to communication. This medical record chart review examined data on 72 patients and 265 falls. A content thematic analysis was used to identify how patient communication is characterized in relation to falls, and their prevention and management strategies. The data reflected that staff viewed patients having difficulty following simple instructions as contributing to falls. Gaining the attention of staff and communicating basic needs were also considered to be contributing factors for falls. Patients were often described as experiencing a fall when taking a risk or attempting to address an unmet basic need. Furthermore, written notes for patients with more severe communication disability reflected that the patient's communication impairments prevented staff from establishing the circumstances of some falls and complicated the assessment for injury following a fall. The medical records and incident reports of patients with communication disability following stroke reveal that hospital staff recognize the impact of communication disability as potential risk factors for falls for this group. It was difficult for staff to report the circumstances of the fall for patients with severe communication disability. Despite the recognition of communication as a potential contributing factor, few medical record entries documented strategies related to communication interventions to improve patients' ability to understand instructions, gain attention or communicate basic needs. What is already known on the subject People with stroke are at a high risk of falls during their hospital admission. However, little is known about the circumstances of their falls and the influence of communication disability on these falls. What this paper adds to existing knowledge Patients with communication disability have unique factors that contribute to their falls in the hospital. Patients were described as experiencing a fall when taking a risk or attempting to address an unmet need, and these falls were often related to a patient's difficulties communicating their basic needs, gaining attention from staff, and following simple instructions. What are the potential or actual clinical implications of this work? Communication disability as a risk factor for a fall, and fall prevention strategies tailored to the communication disability, were typically identified and documented by physiotherapists, occupational therapists and nursing staff. The inclusion of speech pathologists in fall risk assessment, management, and prevention strategies may provide crucial information regarding the patient's communication disability that may enhance their fall prevention plan.

INCOG 2.0 Guidelines for Cognitive Rehabilitation Following Traumatic Brain Injury, Part IV: Cognitive-Communication and Social Cognition Disorders.

Moderate to severe traumatic brain injury causes significant cognitive impairments, including impairments in social cognition, the ability to recognize others' emotions, and infer others' thoughts. These cognitive impairments can have profound negative effects on communication functions, resulting in a cognitive-communication disorder. Cognitive-communication disorders can significantly limit a person's ability to socialize, work, and study, and thus are critical targets for intervention. This article presents the updated INCOG 2.0 recommendations for management of cognitive-communication disorders. As social cognition is central to cognitive-communication disorders, this update includes interventions for social cognition. An expert panel of clinicians/researchers reviewed evidence published since 2014 and developed updated recommendations for interventions for cognitive-communication and social cognition disorders, a decision-making algorithm tool, and an audit tool for review of clinical practice. Since INCOG 2014, there has been significant growth in cognitive-communication interventions and emergence of social cognition rehabilitation research. INCOG 2.0 has 9 recommendations, including 5 updated INCOG 2014 recommendations, and 4 new recommendations addressing cultural competence training, group interventions, telerehabilitation, and management of social cognition disorders. Cognitive-communication disorders should be individualized, goal- and outcome-oriented, and appropriate to the context in which the person lives and incorporate social communication and communication partner training. Group therapy and telerehabilitation are recommended to improve social communication. Augmentative and alternative communication (AAC) should be offered to the person with severe communication disability and their communication partners should also be trained to interact using AAC. Social cognition should be assessed and treated, with a focus on personally relevant contexts and outcomes. The INCOG 2.0 recommendations reflect new evidence for treatment of cognitive-communication disorders, particularly social interactions, communication partner training, group treatments to improve social communication, and telehealth delivery. Evidence is emerging for the rehabilitation of social cognition; however, the impact on participation outcomes needs further research.

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

IntroductionInvolving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well‐planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects.MethodThe aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities.ResultsSix youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision‐makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum.ConclusionThe Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID‐19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision‐makers and partners.Patient or Public ContributionThis study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.

Giving voice to the voices of legal practitioners with disabilities

Several international human rights conventions focus on ensuring access to justice for all. Based on their unique lived experiences, legal practitioners with disabilities have much to offer in terms of understanding – from an insider perspective – the accommodations that could be used in court. The aim of this study was to describe the perspectives of legal practitioners with disabilities on their own experience of participation in court (focusing on both barriers and facilitators), and to elicit their suggested accommodations for persons with severe communication disabilities. Online and telephonic interviews were conducted with seven legal practitioners with disabilities. In response to the questions, three themes were conceptualised: participation barriers that hinder access to justice; accommodations related to ensuring equality; and accommodations related to procedural fairness. The insider perspectives of legal practitioners with disabilities may assist other persons with disabilities to participate equally in court, thereby ensuring access to justice for all. Points of interest Law professionals with disabilities, for example lawyers and judges, have unique experiences of the court system, which means that they can offer a clearer understanding of what communication skills and strategies are needed to participate in court. Law professionals with disabilities can suggest effective communication methods and strategies that other persons with disabilities could use in court. There are certain barriers in court that make it difficult for persons with disabilities to participate in court, for example, policy barriers. There are also certain accommodations that can assist persons with disabilities to be treated with respect in court, in a fair and equal way. In the future, law professionals with disabilities should be involved when new laws, policies and guidelines are created that could assist persons with disabilities to participate in the court system in an equal way.

Investigating Court Accommodations for Persons with Severe Communication Disabilities: Perspectives of International Legal Experts

Globally, persons with disabilities, specifically individuals with severe communication disabilities, require a range of court accommodations to enable them access to the court system, thereby realizing their right to access to justice. This study aimed to investigate the perspectives of nine international experts on possible universal court accommodations for these individuals. An asynchronous, online focus group discussion with four questions was conducted over five days. Through deductive thematic analysis, four themes related to Article 13 of the CRPD were identified: Accommodations related to procedural fairness (e.g., testifying via CCTV camera); accommodations related to ensuring equality (e.g., specific international and local legislation); accommodations related to non-discrimination (e.g., developing appropriate questioning techniques); and accommodations related to legal practitioners (e.g., disability sensitivity training). The range of identified court accommodations could act as the impetus needed to ensure access to justice, a basic human right, for persons with disabilities internationally.

Court accommodations for persons with severe communication disabilities: A legal scoping review.

The National Institute for the Humanities and Social Sciences (NIHSS) and the South African Humanities Deans Association (SAHUDA).

Falls in hospital patients with acquired communication disability secondary to stroke: A systematic review and meta-analysis.

Falls are a common safety incident in people with stroke. Studies report that between 14% and 65% of people with stroke fall at least once during their hospital admission. Risk factors for falls in people with stroke have been reported to include neglect, balance and dependence for activities of daily living. Communication disability has been identified as a risk factor for patient safety incidents in hospital that has not been closely examined as a potential risk factor for falls in people with stroke. To determine the association between communication disability secondary to stroke and falls in people with stroke in hospital. Systematic searches of five electronic databases were conducted in June 2019 using the key concepts of 'falls' and 'stroke' (PROSPERO CRD 42019137199). Included studies provided comparative data of falls in patients with stroke with and without communication disability. The methodological quality of the studies was examined using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD). Both a narrative synthesis and a meta-analysis were completed. A total of 15 studies met the criteria for inclusion and 11 were included in a meta-analysis. Three studies found people with communication disability had an increased rate of falls in hospital. However, a meta-analysis showed no significant association between a non-specific classification of communication disability and an increased risk of falls. There was some indication from individual studies that higher risk of falls may be associated with severe communication disability, but there were insufficient data reported on the severity of the communication disability to draw robust conclusions. The results of this systematic review suggest that a generic classification of communication disability following stroke is not a risk factor for falls. However, further research that is inclusive of this population and considers severity of communication disability more specifically is required. What this paper adds What is already known on the subject The association between communication disability following stroke and falls in hospital is unclear. The literature reports mixed results regarding the impact of a communication disability following stroke on falls risk or rates of falls during hospital admission. What this paper adds to existing knowledge This review is the first to bring together this diverse literature to examine the association between communication disability following stroke and falls in hospital. The results suggest that a generic classification of communication disability following stroke is not a risk factor for falls. What are the potential or actual clinical implications of this work? There is a possibility that moderate to severe communication disability may be related to falls in patients in hospital. Further research is indicated to be more inclusive of people with communication disability, including those with severe communication disability.

Transformative equality: Court accommodations for South African citizens with severe communication disabilities.

BackgroundPersons with disabilities are generally at greater risk of experiencing violence than their peers without a disability. Within the sphere of disability, individuals with severe communication disabilities are particularly vulnerable and have an increased risk of being a victim of abuse or violence and typically turn to their country’s criminal justice system to seek justice. Unfortunately, victims with disabilities are often denied fair and equal treatment before the court. Transformative equality should be pursued when identifying accommodations in court for persons with communication disabilities, as the aim should be to enable such individuals to participate equally in court, without barriers and discrimination.ObjectivesThis research aimed to identify court accommodations recommended by legal experts, which could assist individuals with severe communication disabilities in the South African court.MethodA qualitative design was used to conduct a discussion with a panel of legal experts.ResultsUsing Article 13 (Access to Justice) of the Convention on the Rights of Persons with Disabilities (CRPD) as a human rights framework, four themes were identified: equality, accommodations, participation and training of professionals.ConclusionForeign and national law clearly prohibits discrimination against persons with communication disabilities because of their disability and state that they should be given fair and equal access to the court system. For transformative equality to be achieved, certain rules and laws need to be changed to include specific accommodations for persons with communication disabilities so that they may be enabled to participate effectively in court in the criminal justice system.

Systematic review of facilitated communication 2014–2018 finds no new evidence that messages delivered using facilitated communication are authored by the person with disability

Background and aims Facilitated Communication (FC) is a technique that involves a person with a disability pointing to letters, pictures, or objects on a keyboard or on a communication board, typically with physical support from a “facilitator”. Proponents claim that FC reveals previously undetected literacy and communication skills in people with communication disability. However, systematic reviews conducted up to 2014 reveal no evidence that the messages generated using FC are authored by the person with a disability. This study aimed to conduct a systematic review of the literature on FC published between 2014 and 2018 to inform the 2018 update of the 1995 American Speech-Language-Hearing Association Position Statement on FC. Method A systematic search was undertaken to locate articles about FC in English published in the peer reviewed literature since 2014; and to classify these according to the study design for analysis. Studies meeting the inclusion criteria were classified according to four categories of evidence: (a) quantitative experimental data pertaining to authorship, (b) quantitative descriptive data on messages produced using FC, (c) qualitative data, or (d) commentary material on FC. Main contribution In total, 18 studies met the inclusion criteria. There were no new empirical studies and no new descriptive quantitative studies addressing the authorship of messages delivered using FC. Three new qualitative studies qualified for inclusion; these did not first establish authorship. Of the 15 new commentary papers on FC located, 14 were critical and one was non-critical. The results could be used to inform the development or update of current position statements on FC held locally, nationally, and globally. Conclusion There are no new studies on authorship and there remains no evidence that FC is a valid form of communication for individuals with severe communication disabilities. There continue to be no studies available demonstrating that individuals with communication disabilities are the authors of the messages generated using FC. Furthermore, there is substantial peer-reviewed literature that is critical of FC and warns against its use. Implications FC continues to be contested in high profile court cases and its use promoted in school settings and workshops at university campuses in the US. Our empty systematic review will influence both clinical practice and future clinical guidance; most immediately the American Speech-Language-Hearing Association Position Statement on FC and any future guidance issued by the 19 associations worldwide with positions against FC.

Preparing For Using Augmentative and Alternative Communication in Classrooms: Pre-Service Special Education Teachers’ Perceptions

The purpose of this study was to examine pre-service special education teachers’ perceptions regarding their skills and knowledge about the use of AAC, with respect to how well it prepared them to use AAC with students who have severe communication impairments. A descriptive research design was used to address the research questions. A total of 27 special education pre-service teachers (emphasized whether Early Childhood Special Education or Intellectual Disabilities) completed an online survey. The findings indicate that participants responded positively about their knowledge, ability, skills, and attitudes about teaching and using AAC for students with severe communication disabilities. However, the results found that the majority of participants felt their preparation programs were not adequate in preparing them to implement and use AAC in classrooms. Although the participants felt more confident in their ability to teach students who use AAC, the general consensus was that more preparation training would be helpful in the classroom and with the students themselves. More implications for practice and recommendations for future research are discussed.

Two Studies on Twitter Networks and Tweet Content in Relation to Amyotrophic Lateral Sclerosis (ALS): Conversation, Information, and 'Diary of a Daily Life'.

To date, there is no research examining how adults with Amyotrophic Lateral Sclerosis (ALS) or Motor Neurone Disease (MND) and severe communication disability use Twitter, nor the use of Twitter in relation to ALS/MND beyond its use for fundraising and raising awareness. In this paper we (a) outline a rationale for the use of Twitter as a method of communication and information exchange for adults with ALS/MND, (b) detail multiple qualitative and quantitative methods used to analyse Twitter networks and tweet content in the our studies, and (c) present the results of two studies designed to provide insights on the use of Twitter by an adult with ALS/MND and by #ALS and #MND hashtag communities in Twitter. We will also discuss findings across the studies, implications for health service providers in Twitter, and directions for future Twitter research in relation to ALS/MND.

Use of consumer wireless devices by South Africans with severe communication disability.

BackgroundAdvancements in wireless technology (e.g. cell phones and tablets) have opened new communication opportunities and environments for individuals with severe communication disabilities. The advancement of these technologies poses challenges to ensuring that these individuals enjoy equal access to this increasingly essential technology. However, a paucity of research exists.ObjectivesTo describe the nature and frequency with which South African adults with severe communication disabilities have access to and use wireless devices, as well as the types of activities for which wireless devices are used.MethodSurvey research was conducted with 30 individuals who use augmentative and alternative communication (AAC) technology using the Survey of User Needs Questionnaire developed in the United States, and localized to the South African context.ResultsAll participants, despite their limited education, unemployment and low economic status, owned and/or used mainstream wireless devices. Slightly more than half of the participants (53.3%) needed adaptations to their wireless devices. Advantages of using wireless devices were highlighted, including connecting with others (through using text messaging, social networking, making plans with others, sharing photos and videos with friends), for leisure activities (e.g. listening to music, watching videos, playing games), and for safety purposes (e.g. to navigate when lost, using the device when in trouble and needing immediate assistance).ConclusionThese wireless devices offer substantial benefits and opportunities to individuals with disabilities who rely on AAC in terms of independence, social participation, education and safety/security. However, they still do not enjoy equal opportunity to access and use wireless devices relative to the non-disabled population.

“We definitely need an audience”: experiences of Twitter, Twitter networks and tweet content in adults with severe communication disabilities who use augmentative and alternative communication (AAC)

Purpose: The aim of this study was to investigate the Twitter experiences of adults with severe communication disabilities who use augmentative and alternative communication (AAC) to inform Twitter training and further research on the use of Twitter in populations with communication disabilities. Method: This mixed methods research included five adults with severe communication disabilities who use AAC. It combined (a) quantitative analysis of Twitter networks and (b) manual coding of tweets with (c) narrative interviews with participants on their Twitter experiences and results. Results: The five participants who used AAC and Twitter were diverse in their patterns and experiences of using Twitter. Twitter networks reflected interaction with a close-knit network of people rather than with the broader publics on Twitter. Conversational, Broadcast and Pass Along tweets featured most prominently, with limited use of News or Social Presence tweets. Tweets appeared mostly within each participant's micro- or meso-structural layers of Twitter. Conclusions: People who use AAC report positive experiences in using Twitter. Obtaining help in Twitter, and engaging in hashtag communities facilitated higher frequency of tweets and establishment of Twitter networks. Results reflected an inter-connection of participant Twitter networks that might form part of a larger as yet unexplored emergent community of people who use AAC in Twitter.Implications for RehabilitationTwitter can be used as an important vehicle for conversation and a forum for people with communication disabilities to exchange information and participate socially in online communities.It is important that information and resources relating to the effective use of Twitter for a range of purposes are made available to people with communication disabilities who wish to take up or maintain use of Twitter.People with communication disabilities might benefit from support in using Twitter to meet their goals relating to participation in online forums and information exchange. Practitioners need to consider how their own social media skills might impact on service delivery and supporting these goals.

Digital Personal Stories: A Case Study of Two African Adolescents, with Severe Learning and Communication Disabilities

Context: This action-research case study used a formative experiment methodological framework to examine how two adolescent boys with learning disabilities engaged with an iPad app to create and share their own digital stories. The boys were African immigrants with English as additional language and severe speech and communication difficulties. Case Report: Video observations of the key steps of the action research cycle and interviews with the boys’ teacher and teaching assistant were analysed using content analysis. Findings revealed that despite having some difficulties with learning some of the functions of the app, the boys were able to communicate their ideas to others, take ownership of the story by deciding on photographs and storylines and develop some social skills by presenting the stories to others in the class. Conclusion: Using the Our Story app was helpful in facilitating a sequential arrangement of the pictures and their annotation with sounds and short captions. Study findings are discussed in relation to using iPad apps with children with severe learning disabilities.

A Metasynthesis of Patient-Provider Communication in Hospital for Patients with Severe Communication Disabilities: Informing New Translational Research

Poor patient–provider communication in hospital continues to be cited as a possible causal factor in preventable adverse events for patients with severe communication disabilities. Yet to date there are no reports of empirical interventions that investigate or demonstrate an improvement in communication in hospital for these patients. The aim of this review was to synthesize the findings of research into communication in hospital for people with severe communication disabilities arising from lifelong and acquired stable conditions including cerebral palsy, autism, intellectual disability, aphasia following stroke, but excluding progressive conditions and those solely related to sensory impairments of hearing or vision. Results revealed six core strategies suggested to improve communication in hospital: (a) develop services, systems, and policies that support improved communication, (b) devote enough time to communication, (c) ensure adequate access to communication tools (nurse call systems and communication aids), (d) access personally held written health information, (e) collaborate effectively with carers, spouses, and parents, and (f) increase the communicative competence of hospital staff. Currently there are no reports that trial or validate any of these strategies specifically in hospital settings. Observational and evaluative research is needed to investigate the ecological validity of strategies proposed to improve communication.

Communication training for centre-based carers of children with severe or profound disabilities in the Western Cape, South Africa.

The purpose of this paper is to provide a preliminary, qualitative review of an approach to training centre-based carers in supporting basic communication development and providing communication opportunities for the children with severe and profound disabilities in their care. In South Africa, these children are often the most neglected in terms of planning and providing appropriate interventions. For those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. Sustainable strategies to provide opportunities for basic communication development of these children are urgently sought. Several effective international and local parent training programmes have been developed, but the urgent need remains to train centre-based carers who are taking care of groups of diversely disabled children in severely under-resourced settings. Non-profit organisations (NPOs) have been exploring practical centre-based approaches to skills sharing in physical rehabilitation, activities for daily living, feeding and support for basic communication development. As a freelance speech therapist contracted by four NPOs to implement hands-on training in basic communication for centre-based carers of non-verbal children, the author describes a training approach that evolved over three years, in collaboration with the carers and centre managements. Implications for training (for speech therapists and for community-based rehabilitation workers) and for further research are identified.

Aided Symbol‐Infused Joint Engagement

AbstractWhen characterizing the social communication skills of children with developmental and physical disabilities, researchers may need to account for special considerations, particularly if the children have severe communication disabilities. These children may require means other than spoken language to communicate their needs and thoughts to others if their communication needs are unmet through natural speech production. These means or forms of communication are known as augmentative and alternative communication (AAC). This article discusses aided symbol‐infused joint engagement, a form of joint attention that might be useful when characterizing the joint engagement states of children with communication difficulties who require the use of AAC. The theoretical, empirical, and clinical implications of aided symbol‐infused joint engagement are discussed.

Through the Eyes of Children: Theological Lessons with and from Children with Severe Communication Disabilities

As a speech therapist working with children with severe communication disabilities, the author has had glimpses of some of the theological realities of such children. Several case examples are discussed against their social and cultural backgrounds, including attitudes to disability in general and communication disabilities in particular. The discussion then ventures to some examples of children and theology and some of the children's expressions of their awareness of their relationship with God. There is a need for a hermeneutical competence for health, rehabilitation, and pastoral workers in engaging with children with severe disabilities directly and interpreting their awareness of their relationship with God to others to embrace them not only as recipients but also as contributors in faith communities and in society at large.

Using cultural resources to build an inclusive environment for children with severe communication disabilities: a case study from Botswana

This paper describes the first cycle of an action research project addressing severe communication disabilities in context. Aspects of selected African cultures are being explored as resources in supporting inclusive environments for children with severe communication disabilities. The specific cycle documented here was completed in rural Botswana. This single case study is representative of several, similar cases where collaborative problem-solving with primary caregivers of children with severe communication disabilities (resulting from Cerebral Palsy) overcame the limitations of ‘conventional’ western communication interventions for these children. Culturally specific non-verbal communication and contextual elements of Setswana culture were identified, enabling the communicative participation of young children with severe communication disabilities in their specific social and cultural geography. Implications are indicated for clinical practice, service delivery in communication interventions and general community based rehabilitation programmes. Research implications include the need for more participative methodologies in developing contexts and the need to address communicative participation across disciplines.