Health information and education needs for youth with complex communication needs during the Covid-19 pandemic: rehabilitation professionals' perspectives.

PURPOSE: The worldwide Covid-19 pandemic has highlighted inequities faced by persons with complex communication needs (CCN) in accessing health information and education. This study reports on the perspectives of South African rehabilitation professionals regarding access to health information and education for youth with CCN. MATERIALS AND METHODS: Two asynchronous online written focus groups were conducted with 15 rehabilitation professionals. Participants' contributions were thematically analysed. RESULTS: Participants reported that youth with CCN faced a variety of challenges when accessing health information, related, amongst others, to the format and quality of the information. Participants reported on strategies they had successfully used to support comprehension of health information and the youth's communication during healthcare encounters. Participants suggested various Covid-19-related and general health topics of value to youth, as well as a variety of multimodal and multilingual presentation formats to make health information accessible. This information was used in the development of accessible health information resources that are now freely available on the authors' institutional website. CONCLUSIONS: The results confirmed that there is an urgent need to make accessible health information available in order to include South Africans with CCN in health services during the pandemic and beyond. Implications for rehabilitationHealth information and education (including information and education provided with respect to the Covid-19 pandemic) has often not been accessible to youth with complex communication needs (CCN).South African rehabilitation professionals reported on a variety of challenges that youth with CCN face when attempting to access health information and education, but also reported on strategies that had helped to support them in this.They also highlighted Covid-19-related and general health topics that would be of value to youth, and suggested a variety of information formats and strategies to make health information more accessible.This information can assist in the design of appropriate and accessible health information resources for youth with CCN and other individuals who experience communication challenges.

The Sustainable Development Goals: A framework for addressing participation of persons with complex communication needs in South Africa.

BACKGROUND: Participation in society is the cornerstone to living a meaningful, connected, and healthy life. Persons with complex communication needs, however, often have restricted opportunities to participate in everyday contexts and situations. Reasons for this include societal attitudinal barriers, as well as limited knowledge and skills about augmentative and alternative communication (AAC) to enhance participation. Enhancing participation of persons with complex communication needs requires a holistic and multi-faceted approach. The 17 Sustainable Development Goals (SDGs) with their disability-inclusive agenda provide an impetus for shaping the approach of the Centre for Augmentative and Alternative Communication (CAAC) in enhancing participation of persons with complex communication needs in South Africa. PURPOSE: This paper aims to provide a reflective description and application of the work conducted by the CAAC in addressing the SDGs in South Africa. RESULT: Research and training conducted by the CAAC is shown to be aligned to five SDGs, namely zero hunger (SDG 2), good health and well-being (SDG 3), quality education (SDG 4), decent work and economic growth (SDG 8) and peace, justice, and strong institutions (SDG 16), with a focus on reaching these goals in order to benefit persons with complex communication needs. CONCLUSION: The paper demonstrates that, despite some gains in addressing the SDGs, research and clinical practice still needs to be on these and the remaining SDGs. Furthermore, there is a need to also find ways to integrate the SDGs to ensure participation of persons with complex communication needs in major life activities and society.

The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials.

INTRODUCTION: Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well-planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. METHOD: The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. RESULTS: Six youth aged 19-34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision-makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. CONCLUSION: The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID-19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision-makers and partners. PATIENT OR PUBLIC CONTRIBUTION: This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.

Working together: A review of cross-sector collaborative practices in provision for children with special educational needs and disabilities.

It is widely recognised that cross-sector partnerships are key to improve outcomes for children with special educational needs and disabilities (SEND). However, evidence-based strategies fostering these partnerships have not been systematically identified, and terms designating different forms of collaboration are used interchangeably. This study aims to contribute to systematically identify practices for cross-sector collaboration for children with SEND, critically positioning these within collaborative traditions (multidisciplinarity, interdisciplinarity and transdisciplinarity). A scoping review of the international literature of the past 10 years was conducted, following Arksey and O'Malley's methodology and considering type of SEND studied, country of origin, approach to collaboration portrayed and study design. Only papers describing empirical applications of collaborative strategies were included in the final review (n = 8). Practices identified ranged from multidisciplinary to transdisciplinary and included: partnerships between higher education and healthcare organisations, implementation of school clinics, schools as interdisciplinary hubs, management's own partnerships and networks, assessment in person with the whole team, videoconferencing, periodic meetings with key professionals, informal on-site discussions and transdisciplinary play-based assessment. Implications for practice are considered, in particular the need to examine how these strategies are implemented in a variety of settings and the need to develop the skills that elicit transdisciplinary work.

Barriers and facilitators to participation for children and adolescents with disabilities in low- and middle-income countries - A scoping review.

BACKGROUND: Research has shown that all children and adolescents have the right to participate in their everyday life. However, little is known about what impacts the participation of children and adolescents with disabilities living in low-and middle-income countries. OBJECTIVE: The present study undertakes a scoping review of research to synthesise the current literature about barriers and facilitators to participation in everyday life for children and adolescents with disabilities living in low- and middle-income countries. METHOD: A scoping review was conducted. The databases Psyc INFO, MEDLINE, CINAHL, Pubmed, ERIC and African Wide information were searched for studies published between 2001 and April 2018. Data was analysed using deductive content analysis. The barriers and facilitators to participation were categorised into personal factors, social factors, environmental factors, and policy and programme factors. RESULT: In the end, 17 articles were included for data extraction as they mentioned barriers and facilitators to participation for children and adolescents with disabilities. Most of the reviewed studies reported on barriers to participation. Only one of the studies was performed in a country classified as a low-income country; all other studies were performed in middle-income countries. The results indicate that some factors, especially social factors, could be perceived as both facilitators and barriers to participation. CONCLUSION: There is a lack of studies describing barriers and facilitators in low- and middle- income countries. Barriers and facilitators in proximity to the child and family are most frequently described in the literature.

How Are Stakeholders With Autism Spectrum Disorder Included in the Social Validation of Augmentative and Alternative Communication Research? A Scoping Review.

Introduction Social validation or the inclusion of stakeholders in the research process is beneficial, as it may decrease bias, increases efficacy, and prevents harm. For direct stakeholders such as individuals with autism spectrum disorder (ASD), social validation has mostly included participants who do not experience significant speech, language, and communication limitations while frequently omitting individuals with ASD who have complex communication needs (CCN). The presence of CCN indicates that augmentative and alternative communication (AAC) strategies are needed for individuals to express themselves. Social validation should not be limited to being participants in an intervention but should include involvement in the research process. This requires an understanding of the current trends, levels, and mechanisms of involvement in AAC research. Purpose This review aimed to identify and describe the inclusion of direct stakeholders with ASD in the social validation of AAC research. Method A scoping review was conducted following the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews) methodology to identify AAC research that included stakeholders with ASD (direct and indirect) for social validation and to evaluate their level of involvement using the Typology of Youth Participation and Empowerment pyramid framework. Results Twenty-four studies were identified. Studies primarily included indirect stakeholders (e.g., caregivers) giving in-depth perspectives, while direct stakeholders were limited to being intervention participants. Conclusions Voices of direct stakeholders with ASD and CCN remain limited or excluded in research. Reasons for the exclusion of individuals with ASD and CCN from research and strategies for future inclusion are raised and discussed.

A scoping review of parental roles in rehabilitation interventions for children with developmental delay, disability, or long-term health condition.

The importance of parental roles in rehabilitation interventions (i.e. the tasks and responsibilities assigned to parents in intervention) is widely reported but there is a paucity of information regarding the tasks linked with specific parental roles. A rigorous scoping review was conducted to understand the various roles that parents of children with developmental delays, disabilities, and long-term health conditions perform in intervention and the tasks and responsibilities associated with each role. The results confirm that parents take on distinct intervention roles which can be placed on a continuum from passive to active responsibility. Some parental roles are clearly associated with tasks completed in-session, some are linked with out-of-session tasks while others entail a combination of in-and out-of-session tasks. The in-session tasks linked with the Learner role emerged as central to enabling parents to assume other in-and out-of-session roles. The results also highlight the influence of the parent-professional relationship on the type of roles parents take on in their child's intervention. The findings of the scoping review serve as the initial step in generating items for a tool to measure the type of roles that parents assume in intervention to empirically test the relationship between these roles and parental engagement.

Children in South Africa with and without Intellectual Disabilities' Rating of Their Frequency of Participation in Everyday Activities.

In a low-and middle-income country (LMIC) such as South Africa, not much is known about how children with intellectual disabilities (ID) participate in everyday activities, as no studies to date have compared their participation to peers without ID from the same background. Using a newly developed, contextually valid measure of participation, Picture my Participation (PmP), 106 children with (73) and without ID (33), rated their frequency of participation in activities of daily living. Previous international research has established that children with ID tend to participate less frequently than children without ID in everyday activities outside of the school setting. However, much of this research is based on proxy ratings from caregivers rather than children with ID themselves. There is a growing body of evidence that suggests children with disabilities have uniquely different views of their own participation than their caregivers. The existing research evidence is also delimited to studies conducted predominantly in high income contexts (HICSs). Since it is universally acknowledged that participation patterns are affected by the environment, it is important to evaluate the generalizability of the current evidence to LMICs. The current study found that there were many similar patterns of participation between the two groups although significant differences were noted in social, community, leisure and self-care activities. We compare these results to findings from studies conducted in HICs and find that there are similarities but also differences across contexts. This study highlights the importance of gaining a child's perspective of participation and understanding how intellectual disability can affect participation relative to peers without ID in LMICS.

Participation of young people with disabilities and/or chronic conditions in low- and middle-income countries: a scoping review.

AIM: The purpose of this scoping review was to describe and map the literature available on the participation of young people (0-21y) with disabilities and/or chronic conditions living in low- and middle-income countries (LMICs). METHOD: A systematic search and selection process identified 78 publications. Descriptive data were extracted using a data-charting form, and studies were mapped using the family of participation-related constructs framework. RESULTS: The findings demonstrated that, although the published evidence is steadily increasing, the participation research on this vulnerable population is still either absent or very scarce in the majority of LMICs, and very little is known about the participation of children with chronic health conditions. Most studies included in this review focused on attendance or 'being there'. INTERPRETATION: Although attendance is an important aspect, more needs to be done to understand children's experiences or involvement while attending, thus capturing both dimensions of participation. WHAT THIS PAPER ADDS: There is an increasing trend in research on participation patterns of children with disabilities in low- and middle-income countries. Most research focuses on children's attendance, or 'being there'. We know very little about children's involvement, or experience, while attending daily activities.

Family Quality of Life of South African Families Raising Children with Autism Spectrum Disorder.

This article describes the family quality of life among families who are raising a young child with autism spectrum disorder. Survey research was conducted with 180 families of children with autism spectrum disorder who were receiving disability-related services in the Gauteng province of South Africa. The principle measure used was the Beach Center Family Quality of Life Scale to assess five subdomains: family interaction, parenting, emotional well-being, material/physical well-being, and disability-related support. Results indicated that families felt the most satisfied with disability-related support and the least satisfied with the family's emotional well-being. Family income, family type, and the severity level of autism were significantly associated with how satisfied families felt about their quality of life.

Children's attitudes toward interaction with an unfamiliar peer with complex communication needs: comparing high- and low-technology devices.

This study examined the attitudes of children with typical development towards an unfamiliar peer with complex communication needs using augmentative and alternative communication (AAC) systems. Specifically, the study aimed to compare attitudes when the peer used mobile technology (i.e., iPad©1 ) with an AAC-specific application (Proloquo2Go™ 2 ) versus a low-technology communication board. A within-group crossover design was utilized involving 78 children. Half of the participants (i.e., Group 1) viewed Video 1 of an unfamiliar peer with complex communication needs in a scripted communication interaction using an iPad with Proloquo2Go followed by Video 2 of the same interaction using a communication board. The other half of the participants (Group 2) viewed these videos in the reverse sequence. The Communication Aid/Device Attitudinal Questionnaire (CADAQ) was completed after watching each video. Results indicated that both groups were more positive towards Video 1 (iPad with Prologuo2Go) on certain dimensions of the CADAQ. The results are discussed and recommendations for future research provided.