RESUMO
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.
Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação , Humanos , Criança , Reino Unido , Inquéritos e QuestionáriosRESUMO
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.
Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação , Humanos , Criança , Adolescente , Comunicação , Grupos Focais , Família , Vocabulário , Transtornos da Comunicação/diagnóstico , Transtornos da Comunicação/terapiaRESUMO
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.
Assuntos
Comportamento de Escolha , Tomada de Decisões , Preferência do Paciente , Adulto , Criança , Comunicação , Grupos Focais , Humanos , Idioma , Projetos Piloto , Distúrbios da Fala , Inquéritos e QuestionáriosRESUMO
Goblet cell hyperplasia and overproduction of airway mucin are characteristic features of the lung epithelium of smokers and COPD patients. Tobacco heating products (THPs) are a potentially less risky alternative to combustible cigarettes, and through continued use solus THPs may reduce smoking-related disease risk. Using the MucilAir™ in vitro lung model, a 6-week feasibility study was conducted investigating the effect of repeated cigarette smoke (1R6F), THP aerosol and air exposure. Tissues were exposed to nicotine-matched whole aerosol doses 3 times/week. Endpoints assessed were dosimetry, tight-junction integrity, cilia beat frequency (CBF) and active area (AA), cytokine secretion and airway mucin MUC5AC expression. Comparison of incubator and air exposed controls indicated exposures did not have a significant effect on the transepithelial electrical resistance (TEER), CBF and AA of the tissues. Cytokine secretion indicated clear differences in secretion patterns in response to 1R6F and THP exposure. 1R6F exposure resulted in a significant decrease in the TEER and AA (p=0.000 and p=0.000, respectively), and an increase in MUC5AC positive cells (p=0.002). Repeated THP exposure did not result in a significant change in MUC5AC positive cells. This study demonstrates repeated cigarette smoke whole aerosol exposure can induce these morphological changes in vitro.
Assuntos
Vapor do Cigarro Eletrônico/toxicidade , Células Caliciformes/efeitos dos fármacos , Mucina-5AC/metabolismo , Mucosa Respiratória/efeitos dos fármacos , Fumaça/efeitos adversos , Aerossóis , Linhagem Celular , Citocinas/metabolismo , Sistemas Eletrônicos de Liberação de Nicotina , Estudos de Viabilidade , Células Caliciformes/metabolismo , Células Caliciformes/patologia , Humanos , Hiperplasia , Mediadores da Inflamação/metabolismo , Exposição por Inalação , Masculino , Pessoa de Meia-Idade , Mucosa Respiratória/metabolismo , Mucosa Respiratória/patologia , Fatores de Tempo , Produtos do TabacoRESUMO
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.
Assuntos
Transtornos Motores , Fala , Adolescente , Grupos Focais , Humanos , Projetos de Pesquisa , PesquisadoresRESUMO
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.
Assuntos
Tomada de Decisão Clínica , Auxiliares de Comunicação para Pessoas com Deficiência , Crianças com Deficiência/reabilitação , Idioma , Criança , HumanosRESUMO
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.
Assuntos
Comportamento de Escolha , Tomada de Decisão Clínica/métodos , Auxiliares de Comunicação para Pessoas com Deficiência/estatística & dados numéricos , Pessoal de Saúde , Transtornos do Desenvolvimento da Linguagem/terapia , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reino Unido , Adulto JovemRESUMO
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.
Assuntos
Tomada de Decisão Clínica , Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação/reabilitação , Adolescente , Criança , Pré-Escolar , Prática Clínica Baseada em Evidências , Feminino , Grupos Focais , Pessoal de Saúde , Humanos , Masculino , Terapeutas Ocupacionais , Pesquisa Qualitativa , Patologia da Fala e Linguagem , Reino UnidoRESUMO
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.
Assuntos
Tomada de Decisão Clínica , Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação/reabilitação , Família , Instituições Acadêmicas , Meio Social , Adolescente , Criança , Pré-Escolar , Feminino , Grupos Focais , Pessoal de Saúde , Humanos , Masculino , Terapeutas Ocupacionais , Pesquisa Qualitativa , Patologia da Fala e Linguagem , Reino UnidoRESUMO
Silver is widely used for its antimicrobial properties, but microbial resistance to heavy metals is increasing. Silver(II) compounds are more oxidizing and therefore have the potential to overcome resistance via extensive attack on cellular components, but have traditionally been hard to stabilize for biological applications. Here, the high oxidation state cation was stabilised using pyridinecarboxylate ligands, of which the 2,6-dicarboxypyridine Ag(II) complex (Ag2,6P) was found to have the best tractability. This complex was found to be more stable in phosphate buffer than DMSO, allowing studies of its interaction with water soluble antioxidants and biological macromolecules, with the aim of demonstrating its potential to oxidize them, as well as determining the reaction products. Spectrophotometric analysis showed that Ag2,6P was rapidly reduced by the antioxidants glutathione, ascorbic acid and vitamin E; the unsaturated lipids arachidonic and linoleic acids, model carbohydrate ß-cyclodextrin, and protein cytochrome c also reacted readily. Analysis of the reaction with glutathione by NMR and electrospray mass spectrometry confirmed that the glutathione was oxidized to the disulfide form. Mass spectrometry also clearly showed the addition of multiple oxygen atoms to the unsaturated fatty acids, suggesting a radical mechanism, and cross-linking of linoleic acid was observed. The seven hydroxyl groups of ß-cyclodextrin were found to be completely oxidized to the corresponding carboxylates. Treatment of cytochrome c with Ag2,6P led to protein aggregation and fragmentation, and dose-dependent oxidative damage was demonstrated by oxyblotting. Thus Ag2,6P was found to be highly oxidizing to a wide variety of polar and nonpolar biological molecules.
Assuntos
Antioxidantes/química , Prata/química , Glutationa/química , Peroxidação de Lipídeos , Espectroscopia de Ressonância Magnética , Espectrometria de Massas , Oxirredução , Estresse Oxidativo , beta-Ciclodextrinas/químicaRESUMO
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.
Assuntos
Tomada de Decisão Clínica , Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação/reabilitação , Adulto , Atitude do Pessoal de Saúde , Criança , Cognição , Feminino , Grupos Focais , Pessoal de Saúde , Acessibilidade aos Serviços de Saúde , Humanos , Aprendizagem , Alfabetização , Masculino , Pessoa de Meia-Idade , Terapeutas Ocupacionais , Patologia da Fala e Linguagem , Inquéritos e Questionários , Reino Unido , Visão Ocular , Adulto JovemRESUMO
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.
Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Tomada de Decisões , Idioma , Criança , Comunicação , HumanosRESUMO
There is a growing awareness that inflammatory diseases have an oxidative pathology, which can result in specific oxidation of amino acids within proteins. It is known that patients with inflammatory disease have higher levels of plasma protein nitro-tyrosine than healthy controls. Fibrinogen is an abundant plasma protein, highly susceptible to such oxidative modifications, and is therefore a potential marker for oxidative protein damage. The aim of this study was to map tyrosine nitration in fibrinogen under oxidative conditions and identify susceptible residues. Fibrinogen was oxidised with 0.25mM and 1mM SIN-1, a peroxynitrite generator, and methionine was used to quench excess oxidant in the samples. The carbonyl assay was used to confirm oxidation in the samples. The carbonyl levels were 2.3, 8.72 and 11.5nmol/mg protein in 0, 0.25mM and 1mM SIN-1 samples respectively. The samples were run on a SDS-PAGE gel and tryptically digested before analysis by HPLC MS-MS. All 3 chains of fibrinogen were observed for all treatment conditions. The overall sequence coverage for fibrinogen determined by Mascot was between 60-75%. The oxidised samples showed increases in oxidative modifications in both alpha and beta chains, commonly methionine sulfoxide and tyrosine nitration, correlating with increasing SIN-1 treatment. Tyrosines that were most susceptible were Tyr135 (tryptic peptide YLQEIYNSNNQK) and Tyr277 (tryptic peptide GGSTSYGTGSETESPR), but several other nitrated tyrosines were also identified with high confidence. Identification of these susceptible peptides will allow design of sequences-specific biomarkers of oxidative and nitrative damage to plasma protein in inflammatory conditions.