The application of the family of participation-related constructs (fPRC) framework to AAC intervention outcomes in children with complex communication needs: a scoping review.

Participation is a fundamental human right, and being able to communicate is an essential component of participation in various life situations, such as at school, with peers, and in the community. Augmentative and alternative communication (AAC) interventions aim to facilitate communication and social interaction, independence, and participation in all aspects of life. The purpose of this study was to summarize and map the AAC intervention outcomes for children with complex communication needs onto the Family of Participation-Related Constructs (fPRC) framework. The scoping review identified 270 studies for inclusion, and the data gathered was extracted and mapped onto the fPRC framework. The results indicate that although many studies have reported on participation-related constructs such as activity competence and context, there is still insufficient focus on attendance and involvement, sense of self, and environment constructs. Hence, future research in the field of AAC is needed on the various constructs of participation proposed by the fPRC framework.

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 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.

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.

The effects of augmentative and alternative communication interventions on the receptive language skills of children with developmental disabilities: A scoping review.

PURPOSE: To map and synthesise research evidence of the effects that aided and unaided AAC interventions have on the receptive language of children with developmental disabilities. METHOD: This scoping review used a four-pronged search strategy (electronic databases, dissertations and theses, hand search, ancestry searches) to identify germane studies. A total of 16 studies met the inclusion criteria. These studies were described in terms of the number of participants, participant characteristics, research design, AAC interventions, intervention outcomes, intervention effects, and quality appraisal. RESULT: The review revealed positive associations between aided and unaided AAC, vocabulary acquisition and symbol comprehension. CONCLUSION: AAC interventions may have merit for the development of receptive language skills in children with developmental disabilities. Specific gaps in relation to unaided AAC, aided augmented input strategies, morphological and syntax development, and discourse comprehension are highlighted.

A scoping review of the use of visual aids in health education materials for persons with low-literacy levels.

OBJECTIVE: To conduct a scoping review on the literature on visual aids in health education for persons with low-literacy. METHODS: A scoping review methodology was employed. Pre-defined selection criteria identified 47 studies for inclusion. Data were extracted in relation to: (a) definitions of low-literacy and health literacy, (b) population studied, (c) research country, (d) consent procedures, (e) visual aids used, (f) development of visual aids, and (g) targeted outcomes. RESULTS: Visual aids developed with persons with low-literacy demonstrated statistically significant improvements in health literacy outcomes, with benefits in medication adherence and comprehension also reported. Pictograms and videos were the most effective visual aids. Only one study adapted consent procedures for low-literacy participants. DISCUSSION: Visual aids in health education materials may benefit persons with low-literacy levels, but large gaps in the research base are evident. Experimental research in low- and middle-income countries, with a particular focus on consent for participants with low-literacy is needed. PRACTICE IMPLICATIONS: Visual aid design needs to include stakeholders. Consent procedures and decision-making need to be specifically adapted for participants with low-literacy.

The Participation of Children with Intellectual Disabilities: Including the Voices of Children and Their Caregivers in India and South Africa.

There is a shortage of research on the participation of children with intellectual disabilities from middle-income countries. Also, most child assessments measure either the child's or the caregiver's perceptions of participation. Participation, however, is an amalgamation of both perspectives, as caregivers play a significant role in both accessing and facilitating opportunities for children's participation. This paper reports on both perceptions-those of children with intellectual disabilities and those of their caregiver, in India and South Africa. A quantitative group comparison was conducted using the Children's Assessment of Participation and Enjoyment (CAPE) that was translated into Bengali and four South African languages. One hundred child-caregiver dyads from India and 123 pairs from South Africa participated in the study. The results revealed interesting similarities and differences in participation patterns, both between countries and between children and their caregivers. Differences between countries were mostly related to the intensity of participation, with whom, and where participation occurred. Caregiver and child reports differed significantly regarding participation and the enjoyment of activities. This study emphasises the need for consideration of cultural differences when examining participation and suggests that a combined caregiver-and-child-reported approach may provide the broadest perspective on children's participation.

The Role of Social Support in Participation Perspectives of Caregivers of Children with Intellectual Disabilities in India and South Africa.

Caregivers are an intrinsic component of the environment of children with intellectual disabilities. However, caregivers' capacity to support children's participation may be linked to the social support that they, as caregivers, receive. Social support may increase participation, educational, psychological, medical and financial opportunities. However, there is a lack of information on social support in middle-income countries. The current study described and compared the social support of caregivers of children with intellectual disabilities by using the Family Support Survey (FSS) in India and South Africa. The different types of social support were subsequently considered in relation to participation, using the Children's Assessment of Participation and Enjoyment (CAPE). One hundred caregiver-child dyads from India and 123 from South Africa participated in this study. The data were analysed using non-parametric measures. Indian caregivers reported greater availability of more helpful support than did the South African caregivers. Social support was associated with children's participation diversity (India) and intensity (South Africa). The child-/caregiver-reported participation data showed different associations with participation. Results from this study suggest that perceived social support of caregivers differs between countries and is associated with their child's participation. These factors need to be considered when generalising results from different countries.