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1.
Disabil Rehabil Assist Technol ; : 1-18, 2024 Apr 09.
Article in English | MEDLINE | ID: mdl-38592954

ABSTRACT

Purpose: Eye-gaze technology offers professionals a range of feedback tools, but it is not well understood how these are used to support decision-making or how professionals understand their purpose and function. This paper explores how professionals use a variety of feedback tools and provides commentary on their current use and ideas for future tool development.Methods and Materials: The study adopted a focus group methodology with two groups of professional participants: those involved in the assessment and provision of eye-gaze technology (n = 6) and those who interact with individuals using eye-gaze technology on an ongoing basis (n = 5). Template analysis was used to provide qualitative insight into the research questions.Results: Professionals highlighted several issues with existing tools and gave suggestions on how these could be made better. It is generally felt that existing tools highlight the existence of problems but offer little in the way of solutions or suggestions. Some differences of opinion related to professional perspective were highlighted. Questions about automating certain processes were raised by both groups.Conclusions: Discussion highlighted the need for different levels of feedback for users and professionals. Professionals agreed that current tools are useful to identify problems but do not offer insight into potential solutions. Some tools are being used to draw inferences about vision and cognition which are not supported by existing literature. New tools may be needed to better meet the needs of professionals and an increased understanding of how existing tools function may support such development.


Professionals sometimes make use of feedback tools to infer the cognitive and/or visual abilities of users, although the tools are not designed or validated for these purposes, and the existing literature does not support this.Some eye-gaze feedback tools are perceived as a "black box", leaving professionals uncertain as to how to usefully interpret and apply the outputs.There is an opportunity to improve tools that provide feedback on how well an eye-gaze system is working or how effectively a user can interact with this technology.Professionals identified that tools could be better at offering potential solutions, rather than simply identifying the existence of problems.

2.
Article in English | MEDLINE | ID: mdl-37962244

ABSTRACT

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.

3.
Augment Altern Commun ; 39(2): 110-122, 2023 06.
Article in English | MEDLINE | ID: mdl-37262383

ABSTRACT

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.


Subject(s)
Communication Aids for Disabled , Communication Disorders , Humans , Speech , Qualitative Research , Communication
4.
Augment Altern Commun ; 39(3): 157-169, 2023 09.
Article in English | MEDLINE | ID: mdl-37178137

ABSTRACT

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.


Subject(s)
Communication Aids for Disabled , Communication Disorders , Humans , Child , United Kingdom , Surveys and Questionnaires
5.
Int J Lang Commun Disord ; 58(3): 910-928, 2023 05.
Article in English | MEDLINE | ID: mdl-36565242

ABSTRACT

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.


Subject(s)
Communication Aids for Disabled , Communication Disorders , Humans , Child , Adolescent , Communication , Focus Groups , Family , Vocabulary , Communication Disorders/diagnosis , Communication Disorders/therapy
6.
Qual Health Res ; 33(1-2): 3-12, 2023 01.
Article in English | MEDLINE | ID: mdl-36382907

ABSTRACT

As speech and language therapists, we explored theories of communication and voice that are familiar to our profession and found them an inadequate basis on which to generate deep and rich analysis of the qualitative data from people who have communication difficulties and who use augmentative and alternative communication. Expanding our conceptual toolkit to include the work of John Shotter allowed us to reconceptualise voice and where it is emergent in dialogue. Reimaging voice will inform clinical and research praxis with people who have communication difficulties as it allows practitioners to attend more closely to the complexity and nuance inherent in interactions with this population. Our proposition is exemplified with excerpts from a single participant who has communication difficulties to illustrate the value of dialogic theory in praxis. This article presents a provocation for the wider academy of qualitative health research; do we have the concepts and tools to develop meaning with people whose lived experiences may also be hard to voice in monologues?


Subject(s)
Voice , Humans , Communication , Qualitative Research
7.
Disabil Rehabil Assist Technol ; : 1-15, 2022 Aug 26.
Article in English | MEDLINE | ID: mdl-36026563

ABSTRACT

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.IMPLICATIONS FOR REHABILITATIONPatient-reported outcome measures (PROMs) can be useful tools to support clinician-patient communication, facilitate shared decision making and establish priorities for rehabilitation.It can be difficult to engage people who have complex communication difficulties in decisions about the important outcomes to them from using augmentative and alternative communication (AAC).This qualitative evidence synthesis provides a deeper understanding of the experiences and perspectives of people who use AAC.The results will be used to inform the development of a PROM which can be used to facilitate shared decision-making, and evaluate AAC interventions from the perspective of the people who use these technologies.

8.
Value Health ; 24(4): 575-584, 2021 04.
Article in English | MEDLINE | ID: mdl-33840436

ABSTRACT

OBJECTIVES: Although literature exists on using qualitative methods to generate potential attributes for a discrete choice experiment (DCE), there is little on selecting which attributes to include. We present a case study in which a best-worst scaling case 1 (BWS-1) survey was used to guide attribute selection for a DCE. The case study's context was the decision making of professionals around the choice of augmentative and alternative communication (AAC) systems for children with limited natural speech. METHODS: BWS-1 survey attributes were generated from literature reviews and focus groups. DCE attributes were selected from BWS-1 attributes. The selection criteria were: include mostly important attributes; create coherent descriptions of children and AAC systems; address the project's research aims; have an appropriate respondent burden. Attributes' importance was judged using BWS-1 relative importance scores. RESULTS: The BWS-1 survey included 19 child and 18 AAC device/system attributes and was administered to N = 93 AAC professionals. Four child and five device/system attributes were selected for the DCE, administered to N = 155 AAC professionals. CONCLUSIONS: In this case study BWS-1 results were useful in DCE attribute selection. Four recommendations are made for future studies: define selection criteria for DCE attributes a priori; consider the impact participant's perspective will have on BWS-1 and DCE results; clearly define key terminology at the start of the study and refine it as the study progresses to reflect interim findings; BWS will be useful when there is little existing stated preference work on a topic and/or qualitative work is difficult.


Subject(s)
Choice Behavior , Decision Making , Patient Preference , Adult , Child , Communication , Focus Groups , Humans , Language , Pilot Projects , Speech Disorders , Surveys and Questionnaires
9.
Qual Health Res ; 31(7): 1260-1274, 2021 06.
Article in English | MEDLINE | ID: mdl-33645331

ABSTRACT

In this study, we aimed to identify processes that enabled the involvement of a person with complex speech and motor disorders and the parent of a young person with these disorders as co-researchers in a U.K. research project. Semi-structured individual and focus group interviews explored participants' experiences and perceptions of public involvement (PI). Sixteen participants were recruited, with representation from (a) the interdisciplinary project team; (b) academics engaged in discrete project activities; (c) individuals providing organizational and operational project support; and (d) the project's two advisory groups. Data were analyzed using Framework Analysis. Five themes were generated: (a) the challenge of defining the co-researcher role; (b) power relations in PI; (c) resources used to enable PI; (d) perceived benefits of PI; and (e) facilitators of successful PI. Our findings provide new evidence about how inclusive research teams can support people with complex speech and motor disorders to contribute meaningfully to co-produced research.


Subject(s)
Motor Disorders , Speech , Adolescent , Focus Groups , Humans , Research Design , Research Personnel
10.
Res Involv Engagem ; 7(1): 17, 2021 Mar 17.
Article in English | MEDLINE | ID: mdl-33731228

ABSTRACT

BACKGROUND: The role of public involvement (PI) in healthcare research is growing in importance and it is imperative that researchers continuously reflect on how to promote the inclusion of patients and service users in the design and delivery of research. PI offers a mechanism for end-users to be involved planning, executing, and reporting research. Some patient groups, including people who have communication difficulties, may struggle to engage in the methods traditionally employed to promote PI engagement such as questionnaires and focus groups. METHODS: This article describes a longitudinal case-study of a PI group, consisting of people who have communication difficulties, for a patient-reported outcome development project. Creative methods, informed by the participatory design principles of enacting, seeing and doing, were introduced stepwise into seven PI meetings. Data from video and visual minutes were used to evaluate the impact of the methods, following each group. Feedback, in the form of verbal and visual outputs taken directly from group meeting minutes, along with vignettes evidenced the impact of the methods on the project and group members. RESULTS: Creative methods enabled the PI group members to successfully contribute in meetings, to interact dynamically and to engage with the aims and processes of the research project. Their involvement facilitated the development of accessible recruitment materials, informed data analysis and supported the dissemination of project outputs. Employing creative methods also enabled both PI group members and the academic team to reflect on their own roles within the research project and the impact that their active involvement in the PI group has had on their personal development and perspectives on research. CONCLUSION: The impact of using creative methods in PI for this patient-reported outcome measure (PROM) development project improved collaboration and understanding between PI members and the academic team. The authentic engagement of people who have communication difficulties in PI generated a more accessible project in terms of both process and impact. Creativity has applicability beyond people whose communication is non-verbal; it should be harnessed by research teams to identify and breakdown barriers to involvement to develop outcome tools that reflect the diversity of our populations.

11.
Disabil Rehabil Assist Technol ; 15(6): 652-662, 2020 08.
Article in English | MEDLINE | ID: mdl-31012746

ABSTRACT

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.


Subject(s)
Clinical Decision-Making , Communication Aids for Disabled , Disabled Children/rehabilitation , Language , Child , Humans
12.
BMJ Open ; 9(11): e030274, 2019 12 01.
Article in English | MEDLINE | ID: mdl-31791963

ABSTRACT

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.


Subject(s)
Choice Behavior , Clinical Decision-Making/methods , Communication Aids for Disabled/statistics & numerical data , Health Personnel , Language Development Disorders/therapy , Adult , Child , Female , Humans , Male , Middle Aged , United Kingdom , Young Adult
13.
Augment Altern Commun ; 35(3): 167-179, 2019 09.
Article in English | MEDLINE | ID: mdl-31290334

ABSTRACT

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.


Subject(s)
Clinical Decision-Making , Communication Aids for Disabled , Communication Disorders/rehabilitation , Adolescent , Child , Child, Preschool , Evidence-Based Practice , Female , Focus Groups , Health Personnel , Humans , Male , Occupational Therapists , Qualitative Research , Speech-Language Pathology , United Kingdom
14.
Augment Altern Commun ; 35(3): 180-192, 2019 09.
Article in English | MEDLINE | ID: mdl-31271046

ABSTRACT

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.


Subject(s)
Clinical Decision-Making , Communication Aids for Disabled , Communication Disorders/rehabilitation , Family , Schools , Social Environment , Adolescent , Child , Child, Preschool , Female , Focus Groups , Health Personnel , Humans , Male , Occupational Therapists , Qualitative Research , Speech-Language Pathology , United Kingdom
15.
Qual Life Res ; 28(10): 2669-2683, 2019 Oct.
Article in English | MEDLINE | ID: mdl-31214931

ABSTRACT

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.


Subject(s)
Communication Aids for Disabled/trends , Patient Reported Outcome Measures , Quality of Life/psychology , Humans
16.
Augment Altern Commun ; 35(2): 80-94, 2019 06.
Article in English | MEDLINE | ID: mdl-30767575

ABSTRACT

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.


Subject(s)
Clinical Decision-Making , Communication Aids for Disabled , Communication Disorders/rehabilitation , Adult , Attitude of Health Personnel , Child , Cognition , Female , Focus Groups , Health Personnel , Health Services Accessibility , Humans , Learning , Literacy , Male , Middle Aged , Occupational Therapists , Speech-Language Pathology , Surveys and Questionnaires , United Kingdom , Vision, Ocular , Young Adult
17.
Disabil Rehabil Assist Technol ; 14(7): 675-681, 2019 10.
Article in English | MEDLINE | ID: mdl-30284928

ABSTRACT

Objective: To involve people living with amyotrophic lateral sclerosis (plwALS) in the scoping and identification of research priorities related to the changes in ALS communication including the use of augmentative and alternative communication (AAC). Methods: Two focus groups of plwALS at early and late stages of change to speech intelligibility were carried out as a patient and participant involvement exercise. The transcriptions of these groups were analyzed thematically and compared between groups. Results: Aspects of anticipation, preparation, adaptation and partnership were identified as key to dealing with communication change as a result of ALS. In particular the involvement of partners was clearly significant, as was the impact on them as well as the plwALS. PlwALS successfully contributed to focus groups and the process of group discussion about communication itself appeared constructive. Conclusions: Research and new interventions should focus further on how to support the partners of plwALS. Future research with plwALS should place AAC strategies and technology in the context of wider communication and investigate how best to support the anticipation, preparation and adaptation to communication change. Specific areas of research need relating to this support are suggested. IMPLICATIONS FOR REHABILITATION People living with ALS (plwALS) are rarely involved in setting the research agenda in the areas of speech and augmentative and alternative communication (AAC). Enabling plwALS to contribute to research, even those with no speech, is feasible with appropriate support. Feedback indicates that communication change and AAC are experienced in different ways by plwALS. Research and intervention should focus on how to support the anticipation, preparation and adaptation to communication change for plwALS.


Subject(s)
Amyotrophic Lateral Sclerosis/complications , Communication Disorders/etiology , Speech Disorders/etiology , Adult , Aged , Amyotrophic Lateral Sclerosis/physiopathology , Communication Disorders/physiopathology , Disease Progression , Female , Focus Groups , Humans , Male , Middle Aged , Speech Disorders/physiopathology
18.
Ergonomics ; 61(2): 329-338, 2018 Feb.
Article in English | MEDLINE | ID: mdl-28697682

ABSTRACT

PURPOSE: Identify location and intensity of discomfort experienced by healthy participants wearing cervical orthoses. METHOD: Convenience sample of 34 healthy participants wore Stro II, Philadelphia, Headmaster, and AspenVista® cervical orthoses for four-hour periods. Participants reported discomfort level (scale 0-6) and location. RESULTS: Participants reported mean discomfort for all orthoses over the four-hour test between 'a little discomfort' and 'very uncomfortable' (mean discomfort score = 1.64, SD = 1.50). Seven participants prematurely stopped tests due to pain and six reported maximum discomfort scores. Significant linear increase in discomfort with duration of wear was found for all orthoses. Significantly less discomfort was reported with Stro II than Headmaster and Philadelphia. Age correlated with greater perceived discomfort. Orthoses differed in the location discomfort was experienced. CONCLUSION: Existing cervical orthoses cause discomfort influenced by design and duration of wear with orthoses' design the more significant factor. This work informed the design of a new orthosis and future orthoses developments. Practitioner Summary: The purpose of this study was to gain greater knowledge about the discomfort caused by wearing of existing neck orthoses in order to inform the design and development of a new neck orthosis. This study gathers empirical data from a surrogate population and concludes that orthosis design is more influential than the duration of wear.


Subject(s)
Braces/adverse effects , Pain/etiology , Adult , Age Factors , Equipment Design , Esthetics , Female , Humans , Male , Middle Aged , Neck , Pressure/adverse effects , Time Factors , Young Adult
19.
Stud Health Technol Inform ; 242: 347-350, 2017.
Article in English | MEDLINE | ID: mdl-28873821

ABSTRACT

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.


Subject(s)
Communication Aids for Disabled , Decision Making , Language , Child , Communication , Humans
20.
Stud Health Technol Inform ; 242: 381-384, 2017.
Article in English | MEDLINE | ID: mdl-28873827

ABSTRACT

This study examines the potential application of an EMG technology as an assistive control method for individuals with severe physical disabilities. The usability and acceptability of a prototype EMG switch was evaluated with health care professionals, researchers and end users using participatory approaches.


Subject(s)
Electromyography , Self-Help Devices , Disabled Persons , Equipment Design , Humans
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