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.

Our Healing Journey: Restoring Connection, Finding Hope and Evolving Wellness.

Wellness is more than the simple absence of disease. As such, health can be envisioned as a journey to a state of optimal wellness and not a simple destination. To measure progress on such a journey, defining wellness by measures other than disease risk factors and biomarkers is necessary. Health can be defined by five areas of functionality: metabolic, physical, emotional, cognitive, and behavioral. Indeed, an individual's behaviors are the outward expression of an inward integration of the metabolic, physical, emotional, and cognitive functions in a fully actualized mind, body, and spirit. Personalized Lifestyle Medicine recognizes the importance of facilitating lasting behavioral change but facilitating this change may be difficult and may resist standard practice models. It is our proposal that a major obstacle on the journey to achieving full wellness is the brokenness of an individual's connections to self, to purpose, to community, and to the environment. Programs aimed both at defining an individual's authentic self and providing patient education using Functional Medicine's unique philosophy can facilitate a patient's creation of a lasting vision that is the work of successful behavioral change.

An open randomized controlled trial of the effects of linguistic simplification and mediation on the comprehension of "easy read" text by people with intellectual disabilities.

BACKGROUND: This trial aimed to measure the effects of extrinsic and intrinsic factors on users' comprehension of health information provided in adapted written "easy read" material. METHOD: Sixty adults with intellectual disabilities undertook The Easy Read Task, randomly allocated with stratification by reading ability to one of four conditions (with and without simplified language/with and without mediation). RESULTS: Neither linguistic complexity of the text nor mediation independently or combined made a significant difference to the understanding of information. Post hoc testing revealed that the group who received simplified language with mediation performed significantly better than the group that had complex text with mediation. None of the other differences between the remaining groups were significant. CONCLUSIONS: Constructing meaning needs to extend beyond a consideration of form as found in "easy read" documents to recognize the role of individual capacity for language processing.

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.

Meeting the communication support needs of children and young people with intellectual disabilities in the Bolivian Andes.

Services available for people with disabilities in Bolivia tend to be fragmented and costly. Children and adults with intellectual disabilities are more likely to have a related communication disability and are thus both literally and metaphorically excluded from having a voice. The following research aimed to explore the experiences of accessing services by people with communication disabilities in Bolivia through semi-structured interviews and one focus group carried out with family members, professionals, service providers, educators and policymakers. It aimed to establish the nature of current services in Bolivia where knowledge, information and resources are scarce. Findings indicated the need to consider an alternative to a medical model approach through a focus on empowering other stakeholders to participate more fully in meeting communication support needs. Conclusions plot ideas for future service delivery and emphasize the central power of sharing practical and expert knowledge.

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.

Investigation of practices to support the complex communication needs of children with hearing impairment and cerebral palsy in a rural district of Kenya: a case series.

BACKGROUND: Rehabilitation services are scarce in low-income countries, where under-representation of some specialist professions has led to the role extension of others. An example of this can be found in Kilifi in Kenya where the role of speech and language therapy has been taken on by occupational therapists and teachers. AIMS: To investigate the communication practices used by these professional groups to support children with complex communication needs in a rural part of Kenya and to explore the ways in which this might be seen to facilitate or obstruct improved communication by asking the following questions: What are the critical features of interactional discourse in practitioner-child dyads with caregiver-child dyads providing a natural comparison? What communicative modalities and practice techniques are invoked? And how does this information relate to extending professional roles? METHODS & PROCEDURES: An in-depth, descriptive study of a case series was conducted in a school for deaf children and the occupational therapy department of a district general hospital. A mixed methodology was used involving naturalistic observation and applied linguistics analysis. A convenience sample was established comprising six practitioner-child dyads assigned to partnership types: (A) three children with hearing impairment and their teachers; and (B) three children with cerebral palsy and their occupational therapists. As a natural comparator, the same three children in B were also observed with their mothers (partnership type C). Dyadic interaction was video recorded on three occasions. The video data were sampled, transcribed into standard orthography and translated. Codes were applied to determine turn structure, linguistic move types and communicative modalities. Sequential analysis was conducted on the move types. OUTCOMES & RESULTS: Partnership type A dyads showed a fairly even turn distribution between teacher and child. A common pattern was teacher-initiated Instruct and Model/Prompt, followed by child response in the form of an Action. The most frequently used modality was Sound Production and Hands-on-Articulators, which corresponded to articulation drill practice. Partnership type B dyads revealed a tendency towards adult domination of turns. The majority of adult-initiated moves required no response from the child. The practice technique Hands-on-Articulators involved manipulating the oral musculature of the child. Partnership type C dyads showed resonances of type B dyads, although focused more on Motor-Action in relation to task performance. CONCLUSIONS & IMPLICATIONS: The assignment of speech and language therapy duties to teachers and occupational therapists has resulted in suboptimal practice for children with complex communication needs.

A perspective from Bolivia on the implications of the World Report on Disability for people with communication disabilities.

Implications of the World Report on Disability for people with communication disabilities (PWCD), as described by Wylie, McAllister, Davidson, and Marshall (2013), include a drive for better demographic information, increased campaigning, and organizational change to improve speech-language pathology services. Qualitative data collected from PWCD and their families in Bolivia provide the baseline for this response. The benefits of collecting population survey information are recognized, but data reinforce the continued need to ensure a positive impact at caseload level. In a country where rhetoric is far removed from lived experience, the starting points for change are very different from those in Minority world countries. A supply and demand model is suggested as an equitable way of balancing efforts to overcome barriers to a better service. Knowledge and information are shown to be key in catalyzing the demand side for the service, while the importance of a solid evidence base for practice would help to improve supply. Although a warning against importing dominant Minority world models of service delivery is outlined by Wylie et al., findings from Bolivia support a more hybrid and nuanced approach that takes into account complex global influences of information flows, past and present.