Revising the Pragmatics Profile of Everyday Communication Skills for traumatic brain injury: An international Delphi study.

BACKGROUND: Assessment tools that assess pragmatic skills in adults with a mild-severe traumatic brain injury (TBI) are hard to access, not person-centred and have a high risk of clinician bias. The Pragmatics Profile is an informant report tool that was originally designed to assess pragmatic skills in people with a developmental disability. AIMS: The aim of this study was to seek consensus from a panel of experts and create a version of the Pragmatics Profile for the TBI population. METHODS AND PROCEDURES: A three-round modified Delphi methodology panel of 13 experts were invited to comment anonymously on the suitability of each question from the Pragmatics Profile modified for those with TBI until ≥ 80% agreement was reached. OUTCOMES AND RESULTS: The Pragmatics Profile (TBI) included 66 questions that achieved consensus after three rounds of the Delphi panel. Qualitative analysis illuminated themes relating to adults with TBI and the need to include contextual factors. CONCLUSIONS AND IMPLICATIONS: The outcome of this project was a revised version of the Pragmatics Profile which is suitable for adults with a mild-severe TBI, informed by experts and freely available online. Future research exploring the tool's utility and acceptability is the next step in its evaluation. WHAT THIS PAPER ADDS: What is already known on this subject Assessment of the everyday functional use of language is challenging but vital. This is particularly true for those who have traumatic brain injury (TBI) where the communication outcomes can be highly variable and may include difficulties with conversational turn-taking, topic maintenance and reading social cues. There are limited tools available to clinicians and those tend to be rating scales or checklists which have a high risk of clinician bias. Available tools have a limited ability to capture the individual's personal social communication goals. What this paper adds to existing knowledge This study created an online Pragmatics Profile (PP) for TBI based on experts' opinions. This paper details the themes that emerged during the process of revising the PP for those with TBI. What are the potential or actual clinical implications of this work? The PP-TBI adds to the toolkit for speech and language therapists working with people with TBI. It meets recent recommendations in the literature to create an interview-based tool. The versatility of an online tool combined with revised input from a panel of experts increases the likelihood that clinicians will utilise this tool. Given the long-term use of the original PP by clinicians for almost 30 years and a focus on personalised care, the format and approach are also likely to be acceptable to clinicians.

Structured observation and informant report assessments in intellectual disability: Reflections of qualified and student speech-language pathologists.

PURPOSE: The purpose of this study was to explore the perspectives of qualified and student speech-language pathologists (SLPs) on the clinical utility of informant report and observation tools following a 1-day workshop using a decision tree. METHOD: Each participant group (qualified [n = 4] or student SLP [n = 8]) attended a 1-day workshop where they engaged with informant report and structured observation tools using video case studies. Each workshop concluded in a focus group conducted by an independent researcher. NVivo 12 software supported inductive coding and subsequent thematic analysis of transcribed data. RESULT: Thematic analysis revealed that participants' perceptions of tools' clinical utility could be conceptualised as three themes (a) tool characteristics, (b) external clinical work demands, and (c) clinician preparedness. CONCLUSION: Participants' views on the utility of informant report and structured observation were influenced by tensions between their desires, the realities of clinical practice, and their own capabilities. This has implications for workforce development in the field in providing clinician guidance, training, and support.

Revising the Pragmatics Profile using a modified Delphi methodology to meet the assessment needs of current speech-language therapists.

BACKGROUND: Non-standardized assessment tools are preferred when assessing communication of individuals with developmental disabilities. Currently, there are limited tools available for assessing this population. Informant report tools such as the Pragmatics Profile (PP) of Everyday Communication Skills are beneficial in gathering a representative view of an individual's communication. However, the PP is out of print and outdated, requiring revisions to meet contemporary assessment needs of speech-language therapists (SLTs). AIMS: To seek consensus from an international panel regarding revising the Pragmatic Profile by (1) updating language and terminology, and (2) development of an online tool. METHODS & PROCEDURES: A total of 13 experienced SLTs and researchers in the disability field participated in a modified Delphi study including an initial online meeting followed by an anonymous four-round survey. Participants reviewed the relevance and wording of questions in the original preschool, school-age and adult versions to create a single combined version of the PP. In each Delphi round, the level of consensus was calculated and qualitative comments were analysed using thematic analysis. OUTCOMES & RESULTS: A revised online version of the PP was created including 64 questions. Qualitative analysis illuminated key concepts in the creation of a revised form including the need for plain and age-neutral language, which is inclusive of all communication modalities and physical impairments, and identifies behaviours that have the potential to be communicative acts. Using conditional logic, users are navigated to the appropriate questions based on the intentionality level of the individual rather than their age. CONCLUSIONS & IMPLICATIONS: This study resulted in the revision of a valued assessment tool appropriate for current disability service provision that identifies communication along the continuum of intentionality rather than age. WHAT THIS PAPER ADDS: What is already known on this subject Non-standardized tools are appropriate when assessing communication of individuals with developmental disabilities. However, there are limited published tools suitable for this population with several of them out of print, making it difficult to conduct a holistic assessment. What this study adds to the existing knowledge This study resulted in the creation of an online PP based on experts' opinion. The revised PP modified the primary focus of the tool from age- to skill-based whereby questions are targeted according to intentionality level. Revisions included plain language, and inclusion of all communication modalities and physical impairments via a series of prompts to ensure that the information provided by informants is accurate and relevant. What are the potential or actual clinical implications of this work? The revised PP adds to the toolkit of an SLT working with individuals with a developmental disability and allows for accurate reporting of functional communication. Guided by experts' opinion, the revised PP is likely to be highly valued in the increasingly technological world in which we live.

The Effectiveness of Rapid Syllable Transition Treatment in Improving Communication in Children with Cerebral Palsy: A Randomized Controlled Trial.

Cerebral palsy (CP) is a movement disorder and majority of children with CP have communication impairments which impact participation with this population. Rapid Syllable Transition Treatment (ReST) is a motor speech intervention primarily for children with Childhood Apraxia of Speech (CAS). A recent pilot study in which ReST was trialed with children with CP showed improved speech performance. Therefore, a single blind randomized controlled trial to compare ReST to usual care with 14 children with moderate-to-severe CP and dysarthria was conducted. ReST was provided on telehealth. ANCOVA with 95% confidence intervals indicated significant group differences in favor of ReST in speech accuracy (F = 5.1, p = .001), intelligibility (F = 2.8, p = .02) and communicative participation on both the FOCUS (F = 2, p = .02) and Intelligibility in Context Scale (F = 2.4, p = .04). ReST was found to be more effective than usual care.

Rethinking device abandonment: a capability approach focused model.

It is estimated that approximately 97 million people in the world have complex communication needs and may benefit from alternative and augmentative communication (AAC). Although AAC is considered an evidenced-based intervention, device abandonment remains common, and researchers have attempted to analyze the causes of people abandoning devices. These devices have been prescribed following extensive assessment and often a protracted period of negotiation with a funding body. In this paper, we present the process of AAC prescription using a new model called the Communication Capability Approach by adding the Capability Approach from Amartya Sen to the widely used Participation Model. This allows clinicians to see individual daily decision-making as a valid choice of the individual. We propose reframing the concept of device abandonment as the person and their family making a choice to use a full range of multimodal communication to meet their own needs. This changes the tone of the narrative to viewing the person using AAC as competent and able to exercise self-determination and agency in this decision rather than as abandoning the device. AAC choices can be made on a day-to-day basis, according to the context of use so that people do not abandon devices but rather use whichever mode of communication is appropriate to the context.

Motor Speech Interventions for Children With Cerebral Palsy: A Systematic Review.

PURPOSE: Dysarthria is common among children with cerebral palsy (CP) and results in poor speech intelligibility and subsequently low communicative participation. Neuroplasticity evidence suggests that adherence to principles of motor learning (PML) improves motor speech intervention outcomes. Motor speech interventions aim to improve speech intelligibility and ultimately facilitate participation, but the effectiveness of these interventions and their inclusion of PML are not clear. Aims are as follows: (a) evaluate the effectiveness motor speech interventions in improving speech intelligibility; (b) summarize the aims, outcome measures, and outcomes relating to the International Classification of Functioning and Disability Child and Youth; and (c) summarize the principles of motor learning used in the intervention. METHOD: Eight databases were searched, complemented by a hand search. Studies of any level of evidence were included if they used a motor speech intervention and measured speech in children with CP aged 0-18 years. Studies before 2000 or not in English were excluded. The review was conducted and reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was rated using the Single Case Experimental Design Scale and Physiotherapy Evidence Database-P rating scales. The strength of evidence was evaluated with Grading of Recommendations, Assessment, Development and Evaluation. RESULTS: Of 1,036 initial articles, 21 were included. Eight interventions were identified including 131 participants aged 3-18 years. All studies aimed to improve speech intelligibility or articulation and reported improvement at sound, word, or sentence level. One study reported improvements in communicative participation. The strength of evidence ranged from very low to moderate for one intervention. Adherence to PML was inconsistent. CONCLUSIONS: The quality of evidence is very low to moderate. More research on motor speech interventions that adhere to PML is required. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.21817959.

Outcomes of a novel single case study incorporating Rapid Syllable Transition treatment, AAC and blended intervention in children with cerebral palsy: a pilot study.

PURPOSE: Motor speech and augmentative and alternative communication (AAC) interventions are commonly used with children with cerebral palsy (CP) but there is limited literature comparing the effectiveness of these interventions. The purpose of this study was to investigate the effectiveness of intensive AAC, Rapid Syllable Transition Treatment (ReST), and blended intervention, a combination of motor-speech and AAC, on speech accuracy and sentence length and complexity. METHODS: A single case experimental design across participants with repeated measurements across phases (ABACADA design) was used. Four participants aged 8-14 years with CP who used a speech-generating device (SGD) received three 6-week intervention blocks that included ReST, AAC, and blended intervention. Measures were taken during intervention and baseline phases and at maintenance two and four weeks after the last intervention phase. Participants were randomized to starting with either ReST or AAC with the blended intervention delivered last. RESULTS: All participants improved their speech accuracy and sentence length and complexity in speech and with their SGD in all three interventions. The data demonstrated overall immediacy of the effect with all interventions and retention of gains across the whole sequence of phases. The order of AAC or ReST interventions or the severity of CP did not impact the intervention gains. CONCLUSION: This study suggests that intensive AAC, a multi-modal approach, and ReST improve speech accuracy and sentence length and complexity in children with moderate CP, but all require further investigation.Implications for rehabilitationIn this paper intensive AAC intervention with a speech generating device (SGD), ReST treatment and multimodal blended intervention were effective in improving speech accuracy and sentence length and complexity in both verbal speech and on communication with the SGD.ReST treatment has not been used with children with CP before. This study established a proof of concept for its effectiveness in children with CP. Further research is warranted.

Valuing relationships: The impact of a sensory program on the interactions of adolescents with severe-to-profound intellectual disabilities.

BACKGROUND: People with severe-to-profound intellectual disabilities often lack meaningful interactions with others. Communication partners need to be skilled in identifying and responding to often-subtle behaviours. One method of facilitating interaction is the use of sensory-based stimuli. METHOD: This study measured the impact of sensory-based stimuli paired with behaviour chain interruptions for three participants in an alternating treatment design using a novel intervention, SensEngage. Measurements included behaviours previously identified as indicating person engagement, self-engagement, happiness as well as participants' use of potential communicative acts (PCAs). RESULTS: The results showed increased person engagement and happiness in the SensEngage condition compared to the non-sensory condition for all three participants. An increased use of PCAs and decrease in self-engagement were observed for two participants. CONCLUSIONS: SensEngage appears to positively impact person engagement, happiness, PCAs and self-engagement for people with severe-to-profound intellectual disabilities.

Mothers of a child with Down syndrome: A qualitative analysis of the perspectives on non-invasive prenatal testing.

OBJECTIVE: The introduction of non-invasive prenatal testing (NIPT) for Down syndrome (DS) has sparked social and ethical debates. To date, in-depth exploration of the voices of Australian mothers of a child with DS about NIPT has been lacking. The purpose of this study was to investigate the perspectives of Australian mothers of a child with DS towards the increasing availability of NIPT. DESIGN AND SETTING: Fifteen mothers of children with DS aged 8 months-39 years participated in-depth interviews, conducted online via the software Zoom™. An inductive thematic analysis of interview data explored mothers' perceptions of NIPT. FINDINGS: Mothers perspectives were nuanced and personal to each woman's circumstance. All mothers highlighted the inevitable association between testing and termination, the importance of autonomy and respecting [m]others' choices to test and to terminate, and that appropriate supports must be provided to ensure informed decision-making. These perspectives existed within an overarching theme of NIPT reflecting and reinforcing societal attitudes towards disability. CONCLUSION: Mothers of a child with DS viewed informed decision-making as crucial both prior to undertaking NIPT and following a positive test result. This study adds a unique Australian perspective to the necessary ongoing social and ethical debate.

'We would have missed out so much had we terminated': What fathers of a child with Down syndrome think about current non-invasive prenatal testing for Down syndrome.

Non-invasive prenatal testing (NIPT) allows early, accurate diagnosis of Down syndrome that has resulted in increased terminations. This qualitative study involved in-depth interviews of fathers of children with Down syndrome about their views on the availability of NIPT. Thematic network analysis revealed that although fathers appreciated an early diagnosis with NIPT, they saw the test as being a predetermined pathway to termination. Fathers felt that expectation to terminate reflects negative societal attitudes towards those with Down syndrome and disability, fearing that NIPT may become a form of eugenics. Fathers retrospectively contrasted these attitudes with the actual reality of raising their children with Down syndrome, which they described as bringing joy to their lives. Findings suggest that although fathers valued NIPT as an information-giving tool that allowed autonomous parental choices about the pregnancy, they believe that it should be accompanied by balanced information about the reality of raising a child with Down syndrome.

The Kirkpatrick model: A useful tool for evaluating training outcomes.

BACKGROUND: Services employing staff to support people with disability usually provide training in a range of areas including communication and managing challenging behaviour. Given that such training can be costly and time-consuming, it is important to evaluate the evidence presented in support of such programs. Efficacy in clinical practice is measured using evidence-based practice. However, there is currently no model that is widely used to compare and evaluate training programs despite the large number of training programs reported each year. METHOD: Six studies published in the last decade that reported the outcomes of communication-based training and six that reported on the outcomes of challenging behaviour training were evaluated using the 4-level Kirkpatrick model. RESULTS: Comparison of the levels of evidence is made for these 12 studies. CONCLUSION: The Kirkpatrick model provides one technique for appraisal of the evidence for any reported training program and could be used to evaluate whether a training program is likely to meet the needs and requirements of both the organisation implementing the training and the staff who will participate.