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.

Practitioners' Self-Assessment of Family-Centered Practice in Telepractice Versus In-Person Early Intervention.

For infants and young children who are identified as deaf or hard of hearing (DHH), best practice principles indicate the provision of family-centered early intervention (FCEI). However, factors such as geographical inaccessibility and workforce shortages can limit families' access to FCEI in their local area. One strategy for overcoming these barriers is telepractice-a method of connecting families and practitioners using synchronous, two-way audiovisual technologies. This study compared the self-assessed use of family-centered practices by a group of practitioners delivering FCEI through telepractice with that of a similar group delivering FCEI in-person. A sample of 38 practitioners (15 telepractice and 23 in-person) from two early intervention programs for children who are DHH completed a self-assessment tool: the Measures of Processes of Care for Service Providers. Results indicated that there were no significant differences between telepractice and in-person sessions with regard to practitioners' self-assessment of their use of family-centered practices.

Comparison of Caregiver Engagement in Telepractice and In-person Family-Centered Early Intervention.

Telepractice-specifically, the use of high-speed internet and interactive videoconferencing technology to deliver real-time audio and video communications between the family and the practitioner-is gaining acceptance as an alternative means of providing family-centered early intervention to families of children who are deaf and hard of hearing. This study examined whether caregivers' reported perceptions of self-efficacy and involvement differed when early intervention was delivered in-person and through telepractice. The Scale of Parental Involvement and Self-Efficacy (SPISE) was used to evaluate perceptions of two groups of caregivers: one that received early intervention in-person (n = 100) and a group who received services through telepractice (n = 41). Results indicated that mode of delivery of services was not related to caregivers' perceptions of their self-efficacy or involvement. Further analysis revealed that although certain caregiver or child characteristics did influence some aspects of caregivers' beliefs about their self-efficacy or involvement, the effect of those variables was similar across both modes of delivery.

Features of employment-related technology for people with intellectual and developmental disabilities: A thematic analysis.

BACKGROUND: The aim of this study was to identify, extract, summarize and list the features of applied cognitive technology used to support employment-related outcomes for people with intellectual and developmental disabilities. METHOD: Thematic analysis was employed on a published research base of 41 studies obtained through a larger scoping review of the literature on the same topic. RESULTS: The thematic analysis identified 109 technology features categorized into 14 main categories of features, which were grouped into three over-arching categories, Output, Input and General Features. The majority of the studies comprised "Output" features with "Audio" features being the most frequent category. Studies using more sophisticated technology incorporated a wider range of features and a larger number of references. CONCLUSIONS: Further investigation regarding the association of specific technology features with the enhancement of various cognitive functions will assist the decision making and technology selection process.

A critical synthesis of barriers and facilitators to the use of AAC by children with autism spectrum disorder and their communication partners.

The aim of this review was to critically synthesize barriers and facilitators to the use of AAC systems by children with autism spectrum disorder (ASD) and their communication partners. Qualitative data related to barriers and facilitators were synthesized from 42 studies located using a systematic search. A diverse range of studies was examined in order to identify the span of barriers and facilitators reported in the literature. Included studies comprised quasi-experimental, non-experimental, and qualitative study designs. The full range of unaided, low-tech aided, and high-tech aided AAC systems were reported across the included studies. The critical synthesis identified 5 themes to which barriers and facilitators are related: (a) Intervention Services and Service Providers, (b) AAC Systems and Technologies (c), Communication Partners of Children with ASD, (d) Parents of Children with ASD, and (e) Children with ASD. The findings suggest that barriers and facilitators to the use of AAC vary across individuals, AAC modalities, and environments. By identifying barriers and facilitators to the use of AAC experienced by children with ASD and their communication partners, service providers might be better equipped to support these children and their communication partners. Clinical implications and future research directions are discussed.

Speech-Language Pathologists' Perceptions of Implementing Communication Intervention with Students with Multiple and Severe Disabilities.

The aim of the present study was to explore speech-language pathologists' (SLPs) perceptions and experiences of factors influencing the implementation of communication interventions for students with multiple and severe disabilities. Eight SLPs in New South Wales, Australia, participated in individual interviews and a focus group. Interview transcripts were scrutinized using thematic analysis. Transcripts were coded into categories, which were then grouped to yield themes. Participants identified a broad range of themes, including SLPs' experience and skills, professional development, and collaboration with teachers and families; as well as home and school contexts, the role of government departments, and broader societal factors. These complex influences suggest that systemic supports may be required at multiple levels in order to increase the likelihood of effective implementation of communication interventions for students with multiple and severe disabilities.

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.

Where are teachers' voices? A research agenda to enhance the communicative interactions of students with multiple and severe disabilities at school.

PURPOSE: Despite the importance of communication for educational participation, researchers have observed low frequencies of communication between teachers and students with multiple and severe disabilities (MSD). Little is known about reasons for these low frequencies. This article explores the literature to develop a new research agenda for approaching this issue. METHOD: Selected studies were reviewed, including qualitative studies involving teachers of students who use augmentative and alternative communication (AAC) in mainstream classrooms. RESULTS: Teachers identified a broad range of issues that influence their ability to educate students who use AAC or demonstrate other significant communication needs. These factors include teachers' attitudes, perceptions and beliefs and broader contextual factors, such as administrative support at the institutional level. However, to date, there has been little research with teachers of students with MSD about factors influencing communication with their students. CONCLUSIONS: A broad range of potential factors may impact upon teachers' ability to communicate with their students. Further research involving teachers of students with MSD is needed to explore the range of potential factors influencing low frequencies of communication. This research may contribute to an understanding of how best to support teachers to enhance communication access for students with MSD in the classroom.

Issues in the use of visual supports to promote communication in individuals with autism spectrum disorder.

PURPOSE: Visual supports are widely used and generally regarded as an effective resource for intervention with individuals who function on the autism spectrum. More cross-contextual research into their efficacy is required. METHOD AND OUTCOMES: In this article, we selectively review the research literature around visual supports based on an original conceptual model that highlights their contribution in the interpersonal social and communicative milieu of classrooms, homes and other daily living contexts. Attention is drawn to a range of practical and research issues and challenges in the use of visual supports as well as evidence of their effectiveness in enhancing participation, learning and social membership in this population. CONCLUSIONS: Areas for further research relating to the introduction and use of visual supports with the autism spectrum disorder population are identified.

Telepractice delivery of family-centred early intervention for children who are deaf or hard of hearing: A scoping review.

INTRODUCTION: The use of telepractice, a method of delivering services through telecommunications technologies that provides two-way, synchronous audio and video signals in real-time, is becoming increasingly commonplace in early childhood education and intervention for children who are deaf or hard of hearing. Although the use of telepractice has been validated in the health sector as a viable and effective alternative to in-person service provision, evidence to support its use in the delivery of family-centred early intervention is still emerging. The purpose of this scoping review was to describe the current use of telepractice in the delivery of family-centred early childhood intervention for children who are deaf or hard of hearing, and their families. METHOD: The review followed the framework outlined by the Joanna Briggs Institute (2015), including an iterative three-step search strategy. Specific inclusion criteria and data extraction fields were outlined in advance. RESULTS: A total of 23 peer-reviewed publications were included in the review. Most publications (70%) provided anecdotal evidence of the challenges and benefits associated with telepractice. The remaining publications (30%) reported on research studies evaluating the effectiveness of early intervention delivered through telepractice. Of the 23 included papers, 18 viewed the use of telepractice positively while the remaining 5 reported mixed conclusions and the need for more data. DISCUSSION: Current evidence in the literature indicates that telepractice can be an effective model for delivering family-centred early intervention for children who are deaf or hard of hearing. However, more research is needed to substantiate the use of telepractice as a viable alternative to traditional in-person services, rather than being seen as supplemental to such services.

Technology use to support employment-related outcomes for people with intellectual and developmental disability: an updated meta-analysis.

OBJECTIVES: The aim of this study is to update and extend an original meta-analysis which included papers published up to and including 2003 and investigated the impact of technology use on employment-related outcomes for people with intellectual and developmental disability. METHODS: Following on from the original meta-analysis, this study is a meta-analysis of pertinent single-subject experimental design studies conducted from 2004 to 2016 and employs the same metric methods as the original contribution. RESULTS: The results are generally consistent with those of the original meta-analysis, namely, applied cognitive technology effectively supports employment-related outcomes for people with intellectual and developmental disability. Nevertheless, significant differences in the intervention effects were found (a) between groups of individuals with varying levels of disability, and (b) between interventions utilizing technology with and without universal design features. CONCLUSIONS: In line with the original contribution, applied cognitive technology seems to support people with intellectual and developmental disabilities to better achieve employment-related outcomes. More research is needed though to explore the impact of different types of technology on employment-related outcomes.

Triangulated Proxy Reporting: a technique for improving how communication partners come to know people with severe cognitive impairment.

PURPOSE: This paper explains and demonstrates the pilot application of Triangulated Proxy Reporting (TPR); a practical technique for enhancing communication around people who have severe cognitive impairment (SCI). METHODS AND RESULTS: An introduction explains SCI and how this impacts on communication; and consequently on quality of care and quality of life. This is followed by an explanation of TPR and its origins in triangulation research techniques. An illustrative vignette explicates its utility and value in a group home for a resident with profound multiple disabilities. The Discussion and Conclusion sections propose the wider application of TPR for different cohorts of people with SCIs, their communication partners and service providers. CONCLUSIONS: TPR presents as a practical technique for enhancing communication interactions with people who have SCI. The paper demonstrates the potential of the technique for improving engagement amongst those with profound multiple disabilities, severe acquired brain injury and advanced dementia and their partners in and across different care settings. Implications for Rehabilitation Triangulated Proxy Reporting (TPR) shows potential to improve communications between people with severe cognitive impairments and their communication partners. TPR can lead to improved quality of care and quality of life for people with profound multiple disabilities, very advanced dementia and severe acquired brain injury, who otherwise are very difficult to support. TPR is a relatively simple and inexpensive technique that service providers can incorporate into practice to improving communications between clients with severe cognitive impairments, their carers and other support professionals.

Deep Assessment: A Novel Framework for Improving the Care of People with Very Advanced Alzheimer's Disease.

Best practice in understanding and caring for people with advanced Alzheimer's disease presents extraordinary challenges. Their severe and deteriorating cognitive impairments are such that carers find progressive difficulty in authentically ascertaining and responding to interests, preferences, and needs. Deep assessment, a novel multifaceted framework drawn from research into the experiences of others with severe cognitive impairments, has potential to empower carers and other support professionals to develop an enhanced understanding of people with advanced Alzheimer's disease and so deliver better calibrated care in attempts to maximize quality of life. Deep assessment uses a combination of techniques, namely, Behaviour State Observation, Triangulated Proxy Reporting, and Startle Reflex Modulation Measurement, to deliver a comprehensive and deep assessment of the inner states (awareness, preferences, likes, and dislikes) of people who cannot reliably self-report. This paper explains deep assessment and its current applications. It then suggests how it can be applied to people with advanced Alzheimer's disease to develop others' understanding of their inner states and to help improve their quality of life. An illustrative hypothetical vignette is used to amplify this framework. We discuss the potential utility and efficacy of this technique for this population and we also propose other human conditions that may benefit from research using a deep assessment approach.

Tailoring communication supports for students with multiple and severe disability using a mentor-model approach: four case studies from classrooms in special schools.

OBJECTIVE: This paper describes four case studies of communication support for students with multiple and severe disability (MSD) in special school classrooms that used a mentor-model approach to the professional development of educational staff. METHODS: A range of observational and report instruments was used to measure student changes in communicative involvement and the views of teaching staff that engaged with them. RESULTS: Four case studies of the contextual features, student needs and specific support strategies utilized in this study in four special school classrooms highlight the challenges that are faced by teaching staff in improving and maintaining student communication outcomes, and the reasons for these challenges. CONCLUSIONS: The mentor-model approach to professional development for educators working with students with MSD holds promise as a general framework for intervention. Despite the inherent variability in student outcomes and the practical limitations in practice, educators reported that the approach was helpful.

Towards improved ways of knowing children with profound multiple disabilities: introducing startle reflex modulation.

OBJECTIVE: To propose startle reflex modulation (SRM) as an objective measure of emotions of children with profound multiple disabilities (PMD). Knowledge about emotion states of children with PMD is crucial to their individualised care and support. Proxy reporting, observational and physiological measures of emotion are reported in the literature. Despite advances in this science, the rigour of the findings and methods are contested. In this article, we introduce SRM; a neurophysiological measure untried with children with PMD, despite its well-known sensitivity to even subtle changes in affective processing without depending on explicit responses. RESULTS: We propose a research agenda that aims to deliver a more comprehensive and accurate profile of the inner states of these children, based upon previous research undertaken using SRM. CONCLUSION: It is suggested that this objective measure has potential to provide useful information about the inner emotional states of children with PMD.

Complex contextual influences on the communicative interactions of students with multiple and severe disabilities.

The aim of this study was to explore teachers' perceptions and experiences of supports and obstacles to engaging students with multiple and severe disabilities (MSD) in communicative interactions at school. Eleven teachers of students with MSD participated in two in-depth interviews. Interview transcripts were analysed for narrative structure and content themes. Inter-coder reliability for coding of content themes was 87.5%. Participants identified a broad range of factors, including: characteristics of individual students, attitudes, perceptions and beliefs of teachers and other staff, class structure, staffing, opportunities for collegiality, resources, funding, infrastructure, collaboration with speech-language pathologists, appropriate communication education for teachers, the role of government departments, and broader societal factors. The findings suggest that there are complex contextual influences on the communicative interactions of students with MSD. While inadequate systemic supports appear to contribute to low frequencies of communication, systemic factors can be structured so that students participate in activities and have opportunities for communication. Further research is required with teachers of students with MSD to substantiate these findings.

Using MINSPEAK: a case study of a preschool child with complex communication needs.

Young children with complex communication needs require the best possible start to their educational lives, and for some, this will involve the use of communication technology supports and collaborative teams. This case study describes the outcomes of a pilot investigation that utilised MINSPEAK as a means of enhancing emergent language and literacy skills in a young girl with a range of participatory challenges. Results indicated that when family members and educational teams work together, it is possible to achieve important progress in early language skills using relevant software, systematic teaching and an accessible speech generating device (SGD). The implications of this modest case study are discussed in terms of innovative practice amongst collaborative alternative and augmentative communication teams.

The impact of partner training on the communicative involvement of students with multiple and severe disability in special schools.

BACKGROUND: The outcomes of a pilot program of staff development in communication support in the context of observed changes in student behaviour states and interactive abilities are reported. Participant reports about the impact of the program on their professional practices are included. METHOD: Six teachers and six teacher aides in special (segregated) schools were provided with a short, intensive training program designed to improve their communicative interactions with students with multiple and severe disability (MSD) in their classes. Behaviour state assessment was used for pre- and post-testing of six students. Teachers and aides completed self-report scales related to their communication skills, knowledge and concerns prior to and at the conclusion of the training program. RESULTS: While staff reported improved skills and knowledge, this was not reflected in improvements in the communicative interactions of the students as observed in their classrooms. CONCLUSIONS: The training provided may not have been sufficient to change well-established teaching and interaction processes. Further research using in-school collaborative mentors is planned.

Educational approaches for maximizing arousal in children with multiple and severe disability: new directions for research and practice in early childhood contexts.

This paper provides a review of several critical issues and directions for research and practice, centred on children with multiple and severe disability, with special attention to the recent study of individual behaviour states as a measure of arousal and involvement. It notes several areas for future research and discusses educational interventions designed to improve the engagement of children, focusing on the central role of early intervention and human ecologies in supporting the achievement of positive educational outcomes for this population.