A systematic review of research on staff training as an intervention to develop communication in children and adults with profound intellectual and multiple disabilities.

INTRODUCTION: This paper aims to identify to what extent staff training interventions are successful in enhancing the development of communication skills in people with profound intellectual and multiple disabilities. METHODS: A systematic review was undertaken, conforming to PRISMA guidelines. English language, peer reviewed, empirical studies of staff training interventions to enhance the communication of people with profound intellectual and multiple disabilities were included. Databases Scopus, Web of Science, Proquest, Linguistics and Language Behaviour Abstracts (LLBA) and Medline were searched in July 2015 and updated in December 2022. Quality appraisal was conducted on 13 studies using Crowe's Critical Appraisal Tool (CCAT). RESULTS: Few good quality evaluations of interventions were found. Challenges to research rigour included the diversity of people with profound intellectual and multiple disabilities, small sample sizes, intervention intensity and the management of fidelity. CONCLUSIONS: Manualised and bespoke interventions showed promise in improving staff communication and responsiveness.

Attributes of communication aids as described by those supporting children and young people with AAC.

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.

Something for everybody? Assessing the suitability of AAC systems for children using stated preference methods.

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.

Attribute Selection for a Discrete Choice Experiment Incorporating a Best-Worst Scaling Survey.

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.

Making Public Involvement in Research More Inclusive of People With Complex Speech and Motor Disorders: The I-ASC Project.

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.

Looking back, looking forward: Methodological challenges and future directions in research on persons with profound intellectual and multiple disabilities.

BACKGROUND: Within the context of the Special Interest Research Group (SIRG) on Persons with Profound Intellectual and Multiple Disabilities (PIMD), researchers often discuss the methodological problems and challenges they are confronted with. The aim of the current article was to give an overview of these challenges. METHODS: The challenges are centred on six topics. These reflect the main components of a study's design: (a) participant demarcation, (b) participant recruitment, (c) data collection and instruments, (d) data analysis, (e) ethics/including the "voice" of persons with PIMD and (f) theoretical models. RESULTS: Next, to describing the specific challenges, possible solutions and pathways to address them are discussed. These are illustrated by recent studies by the authors and other researchers in the field. CONCLUSIONS: The current contribution wants to stimulate further discussion and exchange of ideas, and the development of creative research techniques.

SLTs' conceptions about their own and parents' roles during intervention with preschool children.

BACKGROUND: Current research investigating collaboration between parents and speech and language therapists (SLTs) indicates that the SLT role is characterized by therapist-led practice. Co-working with parents of children with speech and language difficulties is less frequently described. In order to embrace co-working during intervention, the SLT role may need to be reframed, focusing on acquiring skills in the role of coach as well as the role of planning intervention and treating children. AIMS: To report (1) SLTs' conceptions about their own roles during intervention for pre-school children with speech and language difficulties; and (2) SLTs' conceptions of parents' roles during intervention. METHODS & PROCEDURES: A qualitative study used individual, semi-structured interviews with 12 SLTs working with pre-school children. Open-ended questions investigated SLTs' expectation of parents, experience of working with families, and the SLTs' conception of their roles during assessment, intervention and decision-making. Thematic network analysis was used to identify basic, organizational and global themes. RESULTS & OUTCOMES: SLTs had three conceptions about their own role during intervention: treating, planning and coaching. The roles of treating and planning were clearly formulated, but the conception of their role as coach was more implicit in their discourse. SLTs' conception of parents' roles focused on parents as implementers of activities and only occasionally as change agents. CONCLUSIONS & IMPLICATIONS: Collaboration that reflects co-working may necessitate changes in the conception about the role for both SLTs and parents. SLTs and parents may need to negotiate roles, with parents assuming learner and adaptor roles and SLTs adopting a coaching role to activate greater involvement of parents. Applying conceptual change theory offers new possibilities for understanding and enabling changes in SLTs' conception of roles, potentially initiating a deeper understanding of how to achieve co-working during speech and language intervention.

Approaches to communication assessment with children and adults with profound intellectual and multiple disabilities.

Communication assessment of people with profound intellectual and multiple disabilities (PIMD) has seldom been investigated. Here, we explore approaches and decision making in undertaking communication assessments in this group of people. A questionnaire was sent to UK practitioners. The questionnaire elicited information about assessment approaches used and rationales for assessment choices. Fifty-five speech and language therapists (SLTs) responded. Findings revealed that the Preverbal Communication Schedule, the Affective Communication Assessment and the Checklist of Communication Competence were the most frequently used published assessments. Both published and unpublished assessments were often used. Rationales for assessment choice related to assessment utility, sensitivity to detail and change and their applicability to people with PIMD. Underpinning evidence for assessments was seldom mentioned demonstrating the need for more empirical support for assessments used. Variability in practice and the eclectic use of a range of assessments was evident, underpinned by practice-focused evidence based on tacit knowledge.

Professionals' decision-making in recommending communication aids in the UK: competing considerations.

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.

Decision-making in communication aid recommendations in the UK: cultural and contextual influencers.

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.

What's important in AAC decision making for children? Evidence from a best-worst scaling survey.

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.

Parent-mediated communication interventions for improving the communication skills of preschool children with non-progressive motor disorders.

BACKGROUND: Children with motor disorders can have difficulties in producing accurate and consistent movements for speech, gesture or facial expression (or a combination of these), making their communication difficult to understand. Parents may be offered training to help recognise and interpret their child's signals and to stimulate their children's development of new communication skills. OBJECTIVES: To assess the effectiveness of parent-mediated communication interventions, compared to no intervention, treatment as usual or clinician-mediated interventions, for improving the communication skills of preschool children up to five years of age who have non-progressive motor disorders. SEARCH METHODS: We searched CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO, 12 other databases and three trials registers in July 2017. We also searched the reference lists of relevant papers and reviews, and contacted experts working in the field to find unpublished studies. SELECTION CRITERIA: We included studies that used randomised or quasi-randomised designs; compared a parent-mediated communication intervention with no treatment, treatment as usual or clinician-mediated therapy; and included children with non-progressive motor disorders up to five years of age. DATA COLLECTION AND ANALYSIS: We used the standard methodological procedures expected by Cochrane. MAIN RESULTS: This review included two randomised controlled trials involving 38 children (20 boys, 18 girls), aged 15 to 96 months, and their mothers. All children had developmental disabilities; 10 had motor disorders, but it was unclear if these motor disorders affected their gestural, vocal or verbal communication. Mothers attended eight group training sessions over 11 to 12 weeks and received two or three home visits. Outcomes were assessed immediately after training. We found no report of longer-term follow-up. One study took place at an intervention centre in Canada and the other in South Korea.Both studies recruited small numbers of participants from single centres. Since it is not possible to blind participants attending or therapists providing training to group allocation, we considered both studies to be at high risk of performance bias. We also rated one study at high risk of attrition bias, and both studies at low risk of reporting bias.There was very low-quality evidence for all outcomes assessed. There was no evidence of an effect of training for children's initiation of conversation or engagement in joint attention during interaction with their mothers. Mothers who received training became more responsive to their children's communication, but there were no differences in the extent to which they controlled conversation by directing their children. Missing data meant that we were unable to evaluate the effects of training on children's frequency of communication, frequency of spoken language in conversation, speech production, or receptive or expressive language development. There were no effects on maternal stress. We found no reports of the effects of parent training on children's use of individual communication skills, such as asking questions or providing information, on their generic participation or adverse outcomes. Neither did we find reports of mothers' satisfaction with treatment, its acceptability or their compliance with it. AUTHORS' CONCLUSIONS: There is only limited, very low quality evidence that parent-mediated communication interventions may be associated with improvements in interaction between mothers and their preschool children who have motor disorders. The indirectness of the study samples and high risk of bias in the included the studies significantly limits our confidence in the evidence, as do issues with study design and lack of detail in results. It is not clear if training has been tested with children whose motor disorders limit the consistency and accuracy of movements underpinning spoken or gestural communication. Some speech and language therapists currently provide communication training for parents. Further research, with larger numbers of children whose movement disorders affect their speech and gestures, coupled with detailed reporting of children's baseline skills, is needed to test whether communication training for parents can help them to promote the communication development of their young children with movement disorders.

A systematic review and classification of interventions for speech-sound disorder in preschool children.

BACKGROUND: Multiple interventions have been developed to address speech sound disorder (SSD) in children. Many of these have been evaluated but the evidence for these has not been considered within a model which categorizes types of intervention. The opportunity to carry out a systematic review of interventions for SSD arose as part of a larger scale study of interventions for primary speech and language impairment in preschool children. AIMS: To review systematically the evidence for interventions for SSD in preschool children and to categorize them within a classification of interventions for SSD. METHODS & PROCEDURES: Relevant search terms were used to identify intervention studies published up to 2012, with the following inclusion criteria: participants were aged between 2 years and 5 years, 11 months; they exhibited speech, language and communication needs; and a primary outcome measure of speech was used. Studies that met inclusion criteria were quality appraised using the single case experimental design (SCED) or PEDro-P, depending on their methodology. Those judged to be high quality were classified according to the primary focus of intervention. OUTCOMES & RESULTS: The final review included 26 studies. Case series was the most common research design. Categorization to the classification system for interventions showed that cognitive-linguistic and production approaches to intervention were the most frequently reported. The highest graded evidence was for three studies within the auditory-perceptual and integrated categories. CONCLUSIONS & IMPLICATIONS: The evidence for intervention for preschool children with SSD is focused on seven out of 11 subcategories of interventions. Although all the studies included in the review were good quality as defined by quality appraisal checklists, they mostly represented lower-graded evidence. Higher-graded studies are needed to understand clearly the strength of evidence for different interventions.

Speech and language therapists' approaches to communication intervention with children and adults with profound and multiple learning disability.

BACKGROUND: People with profound intellectual and multiple disabilities (PMLD) have communication impairments as one defining characteristic. AIMS: To explore speech and language therapists' (SLTs) decision making in communication interventions for people with PMLD, in terms of the intervention approaches used, the factors informing the decisions to use specific interventions and the extent to which the rationales underpinning these decisions related to the components of evidence based practice (EBP), namely empirical evidence, clinical experience and client/carer views and values. METHODS & PROCEDURES: A questionnaire on communication assessment and intervention for people with PMLD was sent to SLTs in the UK to elicit information on: the communication intervention approaches they used; their rationales for their intervention choices; their use of published evidence to inform decision making. OUTCOMES & RESULTS: Intensive interaction and objects of reference were the communication interventions most often used with people with PMLD, with some differences between children and adults evident. Rationales provided conformed somewhat to the EBP framework though extension of the existing framework and addition of practical and organizational considerations led to a revised typology of rationale for decision making. Rationales most frequently related to the empowerment, development and behavioural preferences of the person with PMLD. CONCLUSIONS & IMPLICATIONS: Empirical research evidence was seldom mentioned by SLTs as informing intervention decision making leading to very diverse practice. There is a need for further research on the effectiveness of commonly used but under-evaluated interventions. There is also a need to alert SLTs to the evidence base supporting other approaches, particularly switch-based, cause and effect approaches.

'It is not going to change his life but it has picked him up': a qualitative study of perspectives on long term oxygen therapy for people with chronic obstructive pulmonary disease.

BACKGROUND: Long-term oxygen therapy (LTOT) extends life in patients with chronic obstructive pulmonary disease with severe hypoxaemia. Questionnaire-based studies of the effects of LTOT have not suggested uniformly positive findings. The few qualitative studies suggest that patients report benefits but also concerns about dependency on oxygen therapy. The aim of the study was to explore the views and experiences of COPD patients, their carers and the healthcare professionals who deliver these services, on the long-term use of oxygen therapy. METHODS: Focus groups were conducted with 16 patients with from the LTOT service, six carers, and nine healthcare professionals (n = 31). Eleven patients with COPD, four carers and one staff manager (n = 16) participated in semi-structured interviews. Interviews and focus group were digitally recorded and field notes were taken. Data were analysed using the thematic network analysis approach. RESULTS: Patients and carers reported the benefits of LTOT including increased social activity, perceived improvements in health status and self-management in routine daily activities. Concerns were raised regarding stigma, dependency on LTOT and deterioration in health status. Staff accounts included negative perceptions, suggesting that LTOT was often inappropriately prescribed and under-used but recommended active patient management to address this challenge. CONCLUSIONS: LTOT has some beneficial effects in improving daily activities and social interaction of patients with COPD but also some limitations. Increased support and monitoring by healthcare professionals would address some concerns, as would better information for patients, carers and the general public.

Staff views of the importance of relationships for knowledge development: is training by specialists a waste of money?

BACKGROUND: The provision of skilled support is dependent on staff knowledge and understanding (Beadle-Brown J., Beecham J., Mansell J., Baumker T., Leigh J., Whelton R. & Richardson L, unpublished data). Influencing staff knowledge and understanding is an important component of interventions. MATERIALS AND  METHODS: Fourteen individual semi-structured interviews elicited staff views and experiences of knowledge development. These were analysed using a thematic network analysis (Attride-Stirling 2001, Qualitative Research 1, 385-405). RESULTS: Three global themes were identified; skills are developed from experience, service aims influence service delivery and practice is more important than theory. This article focuses on the first of these themes. Relationships between staff and service users played a central role in enabling development of knowledge. Although some skills were seen as transferrable, experience of a particular service user was described as being essential. CONCLUSIONS: Support staff may not see the relevance of research findings, professional knowledge or training, unless these have involved direct work with the service user in question.

A scoping review of AAC research conducted in segregated school settings.

BACKGROUND: School education for children with severe disabilities tends to occur in restricted or segregated settings, especially for students who require augmentative and alternative communication (AAC). AIM: We sought to understand the role played by AAC, especially in supporting students' academic learning and social participation in studies conducted in segregated school settings. METHODS: We conducted a scoping review, searching five databases, supplemented by hand, ancestral and forward citation searches of studies published from 2000 to 2020 involving compulsory school-aged students and featuring AAC. Data were extracted and summarized regarding study and participant characteristics, and key findings. RESULT: Our search yielded 141 studies conducted in a segregated setting (n = 129) or mixed settings (n = 12). Most studies focused on communication skills (n = 69); academic skills (n = 27) and social participation (n = 17) were addressed to a far lesser extent. CONCLUSIONS: Research into students requiring or using AAC has focused on teaching communication skills and far less on academic learning and social activities of classrooms and schools. There is a need for research that extends beyond functional communication into how AAC can promote access to these key aspects of school education.

Application of systematic reviews in speech-and-language therapy.

BACKGROUND: Systematic reviews are increasingly being carried out in speech-and-language therapy and are used by practitioners, service commissioners, policy-makers and researchers to inform decision-making, as the body of evidence available about speech-and-language therapy grows. Although systematic reviewing is developing to incorporate new methods of review and synthesis, there are currently limitations in the use of some types of systematic reviews within speech-and-language therapy. AIMS: The purpose of this paper is to provide an overview of the steps involved in the systematic review process and the range of options available. It highlights some challenges to using this process in speech-and-language therapy, with examples based in part on the authors' experiences of involvement in two systematic reviews. A number of developments in systematic review methodology will be outlined and several new approaches to reviewing, both within and outside of speech-and-language therapy, are introduced. These include realist synthesis, evidence-based practice briefs, speech BITE™ and the journal Evidence-Based Communication Assessment and Intervention. MAIN CONTRIBUTION: This paper highlights some of the current benefits and limitations of systematic reviews in speech-and-language therapy. It will facilitate readers to use and carry out systematic reviews in the speech-and-language therapy field. CONCLUSIONS: Systematic reviews are useful in speech-and-language therapy, but awareness of their limitations is important to practitioners, commissioners, policy-makers and researchers. New developments may further increase the benefits of systematic reviews.

COPD and anxiety: its impact on patients' lives.

BACKGROUND: Anxiety is a common comorbidity in people with chronic obstructive pulmonary disease (COPD) but its identification and management are often insufficient. AIM: To explore the experience of living with and managing comorbid anxiety and COPD from a patient's perspective. METHOD: The study followed a qualitative approach. In-depth interviews were carried out with 14 patients who had COPD. RESULTS: Participants believed anxiety had a significant impact on their quality of life. It made them feel isolated and caused them to avoid social occasions and daily activities. Identifying anxiety was a challenge because of the overlap in the symptoms of anxiety and those of COPD, and the side-effects of medication. CONCLUSION: Nurses can play a vital role in screening and managing anxiety, and educating people in strategies to prevent episodes of panic.