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Purpose: This paper presents a review of the existing qualitative research literature concerning people's experience of communicating using augmentative and alternative communication (AAC). The aims of conducting this review were to find out more about the values and outcomes that are important to people about the AAC they use to support their communication. This review was conducted to provide a deeper understanding of these experiences to inform the development of a patient-reported outcome measure (PROM)., Materials and Methods: A qualitative evidence synthesis of existing qualitative research literature was undertaken to explore and appraise current knowledge about the experiences of people who use AAC., Results: From 115 qualitative research reports 19 papers were identified that responded directly to the research question and aims of the review. Data were identified that could be organized within an a priori framework consisting of the constructs of values, outcomes, and context., Conclusion: The review has resulted in a deeper, analytical understanding of the experiences of people who require AAC. The results indicate a set of concepts that can be used to inform the development of a PROM. A PROM can be used to assist clinicians and researchers to better understand the perspectives of people who require AAC and evaluate interventions. The results also encourage professionals to reconsider the terminology and methods used when working alongside people who require AAC and to reflect on the multidimensional factors that influence people's experience of communication.

Background: People who have communication difficulties may benefit from using augmentative and alternative communication (AAC). Understanding and measuring outcomes from the use of AAC is an important part of evaluating the impact of devices and services. Outcome measurement needs to reflect the changing nature of the impact of using AAC on an individual's ability to participate in activities of daily life. There is a limited understanding of the concepts that should inform the evaluation of outcomes from AAC device provision, nor how people's expectations from AAC may change over time., Aims: To inform the development of a patient-reported outcome measure for AAC by understanding more about people's expectations from AAC and how these change over time., Methods & Procedures: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south-west of the UK. Four semi-structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience., Outcomes & Results: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross-case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people's hopes and expectations from AAC and how these change over time., Conclusions & Implications: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people's hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research., What This Paper Adds: What is already known on this subject We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient-reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work? This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people's experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across., (© 2023 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

Little is known about what features of AAC systems are regarded by AAC professionals as more suitable for children with different characteristics. A survey was conducted in which participants rated the suitability of hypothetical AAC systems on a Likert scale from 1 ( very unsuitable ) to 7 ( very suitable ) alongside a discrete choice experiment. The survey was administered online to 155 AAC professionals in the United Kingdom of Great Britain and Northern Ireland. Statistical modeling was used to estimate how suitable 274 hypothetical AAC systems were for each of 36 child vignettes. The proportion of AAC systems rated at least 5 out of 7 for suitability varied from 51.1% to 98.5% for different child vignettes. Only 12 out of 36 child vignettes had any AAC systems rated at least 6 out of 7 for suitability. The features of the most suitable AAC system depended on the characteristics of the child vignette. The results show that, while every child vignette had several systems that had a good suitability rating, there were variations, that could potentially lead to inequalities in provision.

Few studies have investigated how individuals with partially intelligible speech choose to communicate, including how, when, and why they might use a speech-generating device (SGD). This study aimed to add to the literature by exploring how this group of individuals use different communication strategies. Qualitative interviews were carried out with 10 participants with partially intelligible speech with the aim of investigating participants' perceptions of modes of communication and communication strategies. Transcripts were analyzed using Framework Analysis to investigate the role of SGDs alongside other communication strategies. Factors that influence why, when, and how a person chooses to communicate were identified and these were interpreted as an explanatory model of communication with partially intelligible speech. Participants described how they made the decision whether to attempt to communicate at all and then which communication method to use. Decision-making was influenced by the importance of the message, how much time is available, past experience, and the communication partner. Each communication attempt adds to an individuals' experience of communicating and influences subsequent decisions. This study suggests that individuals with partially intelligible speech are at risk of reduced communication environments and networks and that current SGDs may not be designed in a way that recognizes their particular needs.

Background: Those supporting children and young people who use augmentative and alternative communication (AAC) contribute to ongoing complex decision-making about communication aid selection and support. Little is known about how these decisions are made in practice and how attributes of the communication aid are described or considered., Aims: To understand how communication aid attributes were described by those involved in AAC recommendations and support for children and young people, and how these attributes were described as impacting on AAC use., Methods & Procedures: A secondary qualitative analysis was completed of interview and focus group data from 91 participants involved in the support of 22 children and young people. Attributes of communication aids described by participants were extracted as themes and this paper reports a descriptive summary of the identified software (non-hardware) attributes., Main Contribution: Decisions were described in terms of comparisons between commercially available pre-existing vocabulary packages. Attributes related to vocabulary, graphic representation, consistency and intuitiveness of design, and ease of editing were identified. Developmental staging of vocabularies, core and fringe vocabulary, and vocabulary personalization were attributes that were described as being explicitly considered in decisions. The potential impact of graphic symbol choice did not seem to be considered strongly. The physical and social environment was described as the predominant factor driving the choice of a number of attributes., Conclusions & Implications: Specific attributes that appear to be established in decision-making in these data have limited empirical research literature. Terms used in the literature to describe communication aid attributes were not observed in these data. Practice-based evidence does not appear to be supported by the available research literature and these findings highlight several areas where empirical research is needed in order to provide a robust basis for practice., What This Paper Adds: What is already known on the subject Communication aid attributes are viewed as a key consideration by practitioners and family members in AAC decision-making; however, there are few empirical studies investigating language and communication attributes of communication aids. It is important to understand how those involved in AAC recommendations and support view communication aid attributes and the impact different attributes have. What this paper adds to existing knowledge This study provides a picture of how communication aids are described by practitioners and family members involved in AAC support of children and young people. A range of attributes is identified from the analysis of these qualitative data as well as information about how participants perceive these attributes as informing decisions. What are the potential or actual clinical implications of this work? This study provides a basis on which practitioners and others involved in AAC support for children and young people can review and reflect on their own practice and so improve the outcomes of AAC decisions. The study provides a list of attributes that appear to be considered in practice and so also provides a resource for researchers looking to ensure there is a strong empirical basis for AAC decisions., (© 2022 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

Background: Symbol communication aids are used by children with little or no intelligible speech as an Augmentative and Alternative Communication strategy. Graphic symbols are used to help support understanding of language and used in symbol communication aids to support expressive communication. The decision making related to the selection of a symbol communication aid for a child is poorly understood and little is known about what language and communication attributes are considered in this selection. Aim: To identify from the literature the language or communication attributes of graphic symbol communication aids that currently influence AAC practice. Method and Procedure: A search strategy was developed and searches were performed on a range of electronic databases for papers published since 1970. Quality appraisal was carried out using the CCAT tool and papers rated as weak were not included in the review. Results: Eleven studies were included in the review reporting data from 66 participants. Weaknesses were identified in most studies that would limit the validity of the results for application to practice. Included studies investigated aspects of vocabulary organization and design, the process of vocabulary selection, and the choice of the symbol system and encoding method. Two studies also evaluated innovative communication aid attributes. Conclusions: Information from studies reported in the research literature provides a sparse source of information about symbol communication aids from which clinicians, children or family members may make informed decisions.Implications for RehabilitationThis review is the first to systematically appraise the literature to answer the question what evidence exists to inform clinical decision making in relation to the language or communication attributes of graphic symbol based communication aids? The review establishes that there is a paucity of evidence from studies and that these decisions must thus be based on other information and factors.The review does establish a small number of language or communication attributes of symbol communication aids, but no synthesis of the results of these studies was possible. This review thus suggests that vocabulary design and organization, symbol system and encoding method, and the choice of vocabulary selection method are attributes that clinicians may carefully review in order to inform decisions.Clinicians encountering symbol vocabulary packages claiming to be 'evidence based' should query the nature of this evidence.The rehabilitation research community should debate and develop appropriate research designs that will facilitate future robust studies investigating the effect of specific language or communication attributes of communication aids.

Objectives: Many children with varied disabilities, for example, cerebral palsy, autism, can benefit from augmentative and alternative communication (AAC) systems. However, little is known about professionals' decision-making when recommending symbol based AAC systems for children. This study examines AAC professionals' preferences for attributes of AAC systems and how they interact with child characteristics., Design: AAC professionals answered a discrete choice experiment survey with AAC system and child-related attributes, where participants chose an AAC system for a child vignette., Setting: The survey was administered online in the UK., Participants: 155 UK-based AAC professionals were recruited between 20 October 2017 and 4 March 2018., Outcomes: The study outcomes were the preferences of AAC professionals' as quantified using a mixed logit model, with model selection performed using a step-wise procedure and the Bayesian Information Criterion., Results: Significant differences were observed in preferences for AAC system attributes, and large interactions were seen between child attributes included in the child vignettes, for example, participants made more ambitious choices for children who were motivated to communicate using AAC, and predicted to progress in skills and abilities. These characteristics were perceived as relatively more important than language ability and previous AAC experience., Conclusions: AAC professionals make trade-offs between attributes of AAC systems, and these trade-offs change depending on the characteristics of the child for whom the system is being provided., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.)

Purpose: People who have complex communication needs (CCN), and who use augmentative and alternative communication (AAC) to help them express themselves, can be difficult to engage in decision making about their healthcare. The purpose of this review was to identify what patient-reported outcome measures (PROMs) have been employed with people who use AAC. Of the tools identified, the review aimed to establish what conceptual frameworks were used and how the reports describe completion of the PROM., Methods: A systematic literature review was carried out. A pre-defined set of search terms was entered into five main health and education databases. Titles and abstracts were sifted for relevance. Full text papers were screened against inclusion/exclusion criteria. Data pertaining to the type and nature of the PROM used was extracted. Complementary data sources were analysed to construct a narrative synthesis of the papers identified., Results: Within 15 papers that met the review criteria, 25 PROMs were used with people who rely on AAC comprising of 15 separate measures. The conceptual frameworks for 12 of these tools were reported from which 62 items, or concepts being measured, were identified. Following synthesis of these items, 9 conceptual domains and 11 sub-domains were generated. Limited information was available about who completed the PROM nor how much, if any, support they received., Conclusions: No PROM that has been developed specifically for people who use AAC was identified by this review. Of the tools that have been used with people who use AAC, the concepts measured were broad and varied. The quality of reporting concerning who completed the PROM was limited, undermining the trustworthiness of many of the studies.

High-tech communication aids are one form of augmentative and alternative communication (AAC) intervention offered to children following an assessment process to identify the most appropriate system based on their needs. Professional recommendations are likely to include consideration of child characteristics and communication aid attributes. Recommendations may be influenced by contextual factors related to the cultural work practices and service context of professionals involved, as well as by contextual factors from the child's life including their family environment and wider settings. The aim of this study was to explore the influence of cultural and contextual factors on the real-time decision-making processes of specialized AAC professionals in the UK. A total of six teams were recruited to the study. Each team carried out an assessment appointment related to a communication aid recommendation for a child and family. Following the appointment, each team participated in a focus group examining their decision-making processes during the preceding assessment. Inductive coding was used to analyse the transcribed data, and three organizing themes emerged relating to the global theme of Cultural and Contextual Influencers on communication aid decision-making. An explanatory model was developed to illustrate the funnelling effect that contextual factors may have on decision-making, which can substantially alter the nature and timing of a communication aid recommendation. Implications for clinical practice and future research are discussed.

Existing research suggests the provision of communication aids for children with complex communication needs can have significant positive impacts on health and quality-of-life. The process of clinical decision-making related to the recommendation of high-tech communication aids is not well documented or evaluated, and research evidence related to the provision of these aids remains limited. This study aimed to understand the factors that specialized AAC professionals in the UK consider when recommending high-tech communication aids. Purposive sampling was used to recruit teams to six focus groups, each of which centred on a team's recent recommendation process (i.e. a discussion following a real-time assessment session, where the team attempted to arrive at an agreed recommendation for a specific child). Thematic network analysis was used to interpret data from the focus group discussions. Participants identified a wide range of child characteristics, access features, and communication aid attributes in weighing up decisions for individual children. Findings suggest that specialized AAC professionals in the UK prioritize access features over language considerations in their communication aid recommendations. An explanatory model was developed to illustrate the interaction effect that several competing considerations may have on decision-making. Implications for clinical practice and future research are discussed.

The choice of which AAC device to provide for a child can have long lasting consequences, but little is known about the decision-making of AAC professionals who make recommendations in this context. A survey was conducted with AAC professionals using best-worst scaling methodology examining what characteristics of children and attributes of AAC devices are considered most important in decision-making. A total of 19 child characteristics and 18 device attributes were selected by the authors from lists generated from literature reviews and from focus groups with AAC professionals, people who use AAC, and other stakeholders. The characteristics and attributes were used to develop two best-worst scaling surveys that were administered to 93 AAC professionals based in the UK. The relative importance of characteristics/attributes was estimated using statistical modelling. Child characteristics related to language and communication, cognitive and learning abilities, and personality traits were generally found to be more important than physical features. Communication, language, and interface-related AAC device attributes were generally more important than hardware and physical attributes. Respondent demographics (e.g., experience, professional background) did not seem to influence the importance assigned to device characteristics or attributes. Findings may inform both future quantitative research into decision-making and efforts to improve decision-making in practice.

AAC service provision in the United Kingdom (UK) has evolved since the first service dedicated to the provision of communication aids opened in 1986. Within the UK, many health and care services are provided via government funding; however, the assessment and provision of AAC and specifically of speech-generating devices (SGDs) is inconsistent and inequitable. The study reported in this paper aimed to collect information on levels of current provision of powered communication aids (the term used in the study to refer to SGDs) by UK service providers in 2013 with the intention of improving future estimates for need of services. A questionnaire survey was designed and data were obtained from 98 AAC services across the UK. Service providers reported the number of individuals known to be using powered communication aids and the mean value reported was 0.0155% of the services' catchment populations. However levels of service provision reported were highly variable. Although the data reported must be treated with caution, it adds to the sparse literature on the topic, informs AAC service design and delivery in the UK, and acts as an indicative baseline measure for future service development.

A systematic review of the language and communication characteristics of communication aids considered in identifying the appropriate aid for a child is introduced. The aim is to improve the decision-making around the provision of symbol communication aids to children.

Alert and transiently nonvocal intensive care unit (ICU) patients are dependent on augmentative and alternative communication (AAC). Unfortunately, the literature demonstrates that existent AAC devices have not been widely adopted, and unaided methods are often the primary modalities used despite being insufficient, and frustrating. We present the results of a qualitative semi-structured interview study with 8 ex-ICU patients, 4 ICU patient relatives, and 6 ICU staff, exploring their AAC needs and requirements. Participants identified important AAC hardware, software, and content requirements. Salient factors impacting on AAC adoption in the ICU setting were also highlighted and included the need for staff training and bedside patient assessment. Based on the study results, we propose a series of recommendations regarding the design and implementation of future AAC tools specifically targeted at this group.

Background: Commissioners and providers require information relating to the number of people requiring a service in order to ensure provision is appropriate and equitable for the population they serve. There is little epidemiological evidence available regarding the prevalence of people who could benefit from augmentative and alternative communication (AAC) in the UK., Aim: To determine the prevalence of people who could benefit from AAC in the UK., Methods & Procedures: An epidemiological approach was taken to create a new estimate of need: the prevalence of the main medical conditions and specific symptoms leading to the requirement for AAC were identified from the literature and AAC specialists were consulted to estimate the number of people who may require AAC., Outcomes & Results: A total of 97.8% of the total number of people who could benefit from AAC have nine medical conditions: dementia, Parkinson's disease, autism, learning disability, stroke, cerebral palsy, head injury, multiple sclerosis and motor neurone disease. The total expectation is that 536 people per 100 000 of the UK population (approximately 0.5%) could benefit from AAC., Conclusions & Implications: To provide accurate figures on the potential need for and use of AAC, data need to be consistently and accurately recorded and regularly reviewed at a community level. The existing data suggest an urgent need for more accurate and up to date information to be captured about the need for AAC in the UK to provide better services and ensure access to AAC strategies, equipment and support., (© 2016 Royal College of Speech and Language Therapists.)

Use of voice output communication aids (VOCAs) can be a very effective strategy to assist people with speech impairments in communicating. Despite this, people who use communication aids often express frustration with VOCAs-desiring devices that are simpler, quicker and more effective to use. Whilst it is not possible to resolve all these issues with technology, it is argued that significant progress can be made. The use of contextual information is one development that could improve the simplicity and effectiveness of communication aid design. Improving the effectiveness of communication aids, including through the use of context support, is a goal of the NIHR Devices for Dignity Assistive Technology Theme. This discussion paper examines the potential for creating 'context aware' communication aids. Three projects in which the authors have been involved are described to illustrate different approaches to the use of contextual information.

Background: Voice output communication aids (VOCAs) are a key form of aided communication within the field of augmentative and alternative communication (AAC). In recent years, rapid developments in technology have resulted in an explosion of devices available commercially, yet little research has been conducted into what people who use VOCAs think about them., Aims: The aim of this research was to explore the perceptions of communication aid design from the perspective of end users and AAC professionals, with the objective being to inform and influence the design of future devices., Methods & Procedures: A two-part study was conducted: interviews were undertaken with people who use VOCAs, and questionnaires were distributed to those who use aided communication and to AAC professionals. Analysis of the interview data was carried out using a qualitative method based on framework analysis, whilst descriptive statistics were generated from the questionnaire data. Interview participants were an opportunity sample of VOCA users within a defined region of the UK. Those recruited were over the age of 12 years and able to engage in the interview process; they were identified through the caseloads of local Speech and Language Therapists specializing in AAC. The questionnaire was marketed to the AAC community throughout the UK. Respondents were self-selecting as those using aided communication, their carers and AAC professionals., Outcomes & Results: Eighteen people participated in the interviews. Questionnaires were completed by 43 people who use aided communication and 68 AAC professionals. The data suggest that current devices are considered to be neither reliable nor durable by users and professionals. Although features given a higher importance ranking are more likely to be perceived as available, a number of important design deficits are identified by users and/or professionals. Simplicity of design (and use) and the desire for devices which support communication that is as fast and spontaneous as possible also emerge as key requirements. Synthesis of the data produced a framework with three main themes covering the range of issues which influence the successful use of a VOCA: specific aspects of the design of a device; the consideration of the wider picture around the person; and the personal context in which someone uses their device., Conclusions & Implications: Although the original aim of the project was to establish the user requirements of VOCA design, the data indicate that the characteristics of the device cannot be considered in isolation. Those factors uncovered highlight questions about whether the design of communication aids is truly effective in meeting the needs of the people who use them. Based on these data, an initial specification for future device design is proposed., (© 2013 Royal College of Speech and Language Therapists.)

Background: There has been a rapid growth in recent years of available technologies for individuals with communication difficulties. Research in the area is currently underdeveloped with practitioners having a limited body of work on which to draw to guide the process of intervention. Concerns have been raised that this newly developed technology may have limited functional usage., Aims: This review aims to investigate the potential barriers and facilitators to high-technology AAC provision and its ongoing use. The aim of the analysis is to explore factors underpinning use rather than effectiveness, thus it synthesized data from predominantly qualitative and survey studies reporting the views and perceptions of AAC users or staff providing the devices., Main Contribution: The review highlights the range of factors that can impact on provision and use of high-technology AAC, which practitioners should consider and address as appropriate in the intervention process. These include: ease of use of the device; reliability; availability of technical support; voice/language of the device; decision-making process; time taken to generate a message; family perceptions and support; communication partner responses; service provision; and knowledge and skills of staff. The work outlines how qualitative synthesis review methods may be applied to the consideration of published material that is not reporting outcomes data, and how this may provide valuable information to inform future studies., Conclusions: Practitioners should be aware of barriers and facilitators to successful use when making recommendations, and consider how barriers where present might be overcome. Aspects of service delivery such as ongoing technical support and staff training may require further consideration. The synthesis of evidence describing views of users and providers, and the implementation of high-technology AAC systems, can provide valuable data to inform intervention studies and functional outcome measures., (© 2011 Royal College of Speech & Language Therapists.)

Background/aims: In the last 20 years the range of high-technology augmentative and alternative communication (AAC) aids has rapidly expanded. This review aimed to provide a 'state of the art' synthesis, to provide evidence-based information for researchers, potential users and service providers., Methods: Electronic databases were searched from 2000 to 2010, together with reference lists of included papers and review papers. The review considered work of any design which reported an intervention using high-tech AAC with people who have communication difficulties (excluding those with solely hearing or visual loss) published in peer-reviewed journals., Results: Sixty-five papers reporting interventions using high-tech AAC were identified. There was evidence that high-technology AAC may be beneficial across a range of diagnoses and ages. The evidence, however, is currently drawn from studies using designs considered to be at high risk of bias., Conclusion: The review suggests that the high level of individual variation in outcome requires a greater understanding of characteristics of clients who may or may not benefit from this technology. Also, the wide range of outcomes measured requires further work in the field to establish what a 'good outcome' from intervention may be., (Copyright © 2012 S. Karger AG, Basel.)

Purpose: To explore users' experiences and perceptions of speech-driven environmental control systems (SPECS) as part of a larger project aiming to develop a new SPECS. The motivation for this part of the project was to add to the evidence base for the use of SPECS and to determine the key design specifications for a new speech-driven system from a user's perspective., Method: Semi-structured interviews were conducted with 12 users of SPECS from around the United Kingdom. These interviews were transcribed and analysed using a qualitative method based on framework analysis., Results: Reliability is the main influence on the use of SPECS. All the participants gave examples of occasions when their speech-driven system was unreliable; in some instances, this unreliability was reported as not being a problem (e.g., for changing television channels); however, it was perceived as a problem for more safety critical functions (e.g., opening a door). Reliability was cited by participants as the reason for using a switch-operated system as back up. Benefits of speech-driven systems focused on speech operation enabling access when other methods were not possible; quicker operation and better aesthetic considerations. Overall, there was a perception of increased independence from the use of speech-driven environmental control., Conclusions: In general, speech was considered a useful method of operating environmental controls by the participants interviewed; however, their perceptions regarding reliability often influenced their decision to have backup or alternative systems for certain functions.