Perceptions of families with adolescents utilizing augmentative and alternative communication technology: A qualitative approach.

PURPOSE: Although family involvement is critical to successful augmentative and alternative communication (AAC) device utilization, little is known about how families adapt to technology. The aim of this qualitative study was to explore parent-reported factors contributing to family adaptation among families with adolescents diagnosed with autism and/or Down syndrome (DS) utilizing AAC technology. This study describes families' experiences related to several interacting variables of the Resiliency Model, including demand, type, appraisal, resources, and problem-solving/coping, that helped shape the outcome of adaptation to AAC technology. Nurses are well-positioned in a variety of practice settings to assess vulnerable families and assist with identifying resources and navigating complex service systems. DESIGN AND METHODS: Semi-structured interviews were conducted with eight parents of adolescents with autism and/or DS (aged 13-18) recruited through online research registries, support organizations, and a social networking site. Recorded interviews were transcribed, and two independent reviewers coded and analyzed the data. Comparisons across all families' thematic summaries were examined for patterns. RESULTS: Five themes described aspects of family adaptation: Contextual Strains and Influences, Continuum of Person-First Approach, Opening Doors, Facilitators of Support, and Planning Is Key. CONCLUSIONS: Findings highlighted the challenges and demands associated with raising an adolescent using an AAC device, as well as the attributes, resources, perceptions, and strategies that either contributed or hindered family adaptation. PRACTICE IMPLICATIONS: AAC technology is readily available for adolescents with developmental disabilities. It is essential that nurses assess key adaptation components to support families in integrating and using the technology.

Chinese-English speaking family perspectives of augmentative and alternative communication use with their children.

INTRODUCTION: Culturally and linguistically diverse families who have children with complex communication needs (CCN) often have limited access to augmentative and alternative communication (AAC) devices and interventions due to the lack of services that acknowledge their families' cultural and linguistic needs. Despite the increasing need for culturally responsive services, little is known about Chinese-English speaking families' perspectives and experience related to AAC use and services. The objective of this study was to understand the perspectives and experiences of Chinese-English speaking family members of children who use AAC use. METHODS: This study employs a qualitative descriptive methodology approach. The researchers conducted individual or group semi-structured interviews with 10 adult family members (mother, father, and grandparent) from four Chinese-English speaking families in the U.S. and Canada who have a child who uses AAC (ages 3-8). RESULTS: Chinese-English speaking families have high acceptance and satisfaction with their child's AAC as long as they see the benefits of the AAC system. Mothers and siblings play unique roles in supporting home AAC practice given frequent engagement with and observed influence on the child who uses AAC. Family members indicated goals in building stronger family connections, but noted that the child's speech difficulties interfered with this goal. Chinese-English speaking families felt they can overcome limitations resulting from lower English language proficiency, but still find difficulties in obtaining resources because of the Western expectations of advocacy. Additionally, service providers' lack of responsiveness related to family goals could prevent families in obtaining AAC resources. CONCLUSIONS: The findings suggest the need for family-centered services with cultural sensitivity and humility for those serving Chinese-English speaking families with children who use AAC. Additionally, involving family members beyond the mother within services may improve both family functioning and child communication.

Views of Speech-Language Pathologists on Telepractice for Children Who Use Augmentative and Alternative Communication.

Telepractice has become increasingly utilized in disability services, particularly with recent and ongoing measures to slow the spread of the novel coronavirus (COVID-19). In this study, 361 speech-language pathologists (SLPs) responded to a national, web-based survey about their views on utilizing telepractice with children aged 3 to 21 who used aided augmentative and alternative communication (AAC), such as picture symbols or speech-generating devices. The views of SLPs varied, and SLPs who received training on AAC telepractice within the last 12 months had more positive views about telepractice than those who did not. Several factors were associated with when and how SLPs thought telepractice was beneficial to serve children who use aided AAC, including SLPs' foundational perspectives about telepractice, service delivery options, considerations related to the child and family, and broader resources and constraints.

Building Family Capacity: supporting multiple family members to implement aided Language modeling.

Family-centered capacity-building practices have been shown to benefit children and families. However, limited research explores these practices for children who use augmentative and alternative communication. This study explored an intervention to teach family members to implement an Aided Language Modeling (ALM) strategy across natural activities at home. A single case multiple probe design was used to evaluate the intervention with five family members and a girl with autism. Results showed the intervention increased family members' percentage of high-fidelity ALM strategy use and rate of ALM. Descriptively, a modest increase was also observed in the proportion of the child's communication using the speech-generating device. Social validity interviews suggested the goals, procedures, and outcomes were socially valid and supported family capacity building.

"Life-altering": A qualitative analysis of social media birth stories from mothers of children with Down syndrome.

Perinatal depression/anxiety is a significant concern for mothers of children with Down syndrome. This is influenced by the way the Down syndrome diagnosis is shared with parents. This study examined social media posts from mothers regarding experiences of the birth of their child with Down syndrome. Forty-three total stories were coded using thematic content analysis. Results highlighted the experiences of mother's who received a diagnosis of Down syndrome for their newborn. Two themes were found with relevant subthemes (i.e., receiving the diagnosis-mother's intuition, confirmation of the diagnosis, influence of potential health concerns, initial emotions, impact of the medical professional; Processing the diagnosis-life-altering, child not meeting expectations, reframing the diagnosis, impact of partner and others). Findings highlight the need for medical personnel to understand this identity-changing process, as perinatal depression/anxiety looks different for these mothers. There is also a need to help them engage in services accordingly.

Preparedness, Training, and Support for Augmentative and Alternative Communication Telepractice During the COVID-19 Pandemic.

PURPOSE: The global COVID-19 pandemic brought about widespread use of telepractice to provide services to children with communication disorders, including students who use aided augmentative and alternative communication (AAC) such as speech-generating devices. This descriptive quantitative study utilized network analysis to investigate the nature of speech-language pathologists' (SLPs') professional resource networks during the pandemic, including what aspects of their professional networks were associated with their confidence to use telepractice to serve students who use aided AAC and whether there were differences for school-based compared to nonschool-based SLPs. METHOD: Participants were 283 SLPs who responded to an online survey that consisted of closed- and open-ended survey items. A resource generator approach was used to gather data about SLPs' professional resource networks for AAC telepractice. RESULTS: SLPs varied widely in their confidence for AAC telepractice. School-based SLPs and SLPs who had 3 years or fewer of AAC experience reported lower confidence, whereas SLPs who spent more work time each week using telepractice and who accessed a greater number of different types of training reported higher confidence. The number of people in different roles providing personal support and the number of different electronic/print resources accessed were not significant predictors of SLPs' confidence. The majority of SLPs wanted additional training, support, or resources related to AAC telepractice. CONCLUSION: The findings from this research suggest the importance of SLPs' access to quality training and support in the areas of AAC and telepractice, particularly for school-based SLPs.

Augmentative and Alternative Communication Telepractice During the COVID-19 Pandemic: A National Survey of Speech-Language Pathologists.

PURPOSE: The novel coronavirus (COVID-19) pandemic has led to sudden, widespread use of telepractice, including providing services to children who use aided augmentative and alternative communication (AAC). This exploratory study examined speech-language pathologists' (SLPs) experiences using telepractice to provide services to children and youth aged 3-21 years who used aided AAC during the earlier months of the pandemic (May-June 2020). METHOD: Three hundred thirty-one SLPs responded to an online survey. Closed- and open-ended survey items were analyzed quantitatively and qualitatively and mixed at the point of interpretation to understand the experiences of SLPs related to the use of telepractice with children who use aided AAC, including how they perceived effectiveness. RESULTS: Most SLPs were using telepractice to provide both direct and consultation/coaching services to children who used aided AAC. There was fairly wide variation in perceptions of effectiveness of both types of services, but SLPs were more likely to rate consultation/coaching services as being more effective than direct services. SLPs identified factors impacting effectiveness across five dimensions: broader factors, practice-based factors (i.e., technology, the type of services), the child, parents and family members, and professionals. School-based SLPs perceived telepractice as being less effective than non-school-based SLPs. CONCLUSIONS: The use of telepractice during the COVID-19 pandemic has unfolded quite differently for different SLPs and the children who use aided AAC that they serve. Although AAC telepractice offers promise for the future, particularly for partnering with families, further research is needed to know how to overcome challenges experienced by SLPs. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.17139434.

A scoping review of AAC research conducted in segregated school settings.

BACKGROUND: School education for children with severe disabilities tends to occur in restricted or segregated settings, especially for students who require augmentative and alternative communication (AAC). AIM: We sought to understand the role played by AAC, especially in supporting students' academic learning and social participation in studies conducted in segregated school settings. METHODS: We conducted a scoping review, searching five databases, supplemented by hand, ancestral and forward citation searches of studies published from 2000 to 2020 involving compulsory school-aged students and featuring AAC. Data were extracted and summarized regarding study and participant characteristics, and key findings. RESULT: Our search yielded 141 studies conducted in a segregated setting (n = 129) or mixed settings (n = 12). Most studies focused on communication skills (n = 69); academic skills (n = 27) and social participation (n = 17) were addressed to a far lesser extent. CONCLUSIONS: Research into students requiring or using AAC has focused on teaching communication skills and far less on academic learning and social activities of classrooms and schools. There is a need for research that extends beyond functional communication into how AAC can promote access to these key aspects of school education.

The Effects of Telepractice to Support Family Members in Modeling a Speech-Generating Device in the Home.

Purpose Family members are an integral support for children with complex communication needs (CCN). However, there is limited research exploring "whole family" intervention to support children with CCN, including evidence-based approaches such as aided language modeling and innovative delivery options such as telepractice. The purpose of this study was to explore whether the use of telepractice-based training and coaching is a valid means of delivering intervention to the whole family unit to implement aided language modeling. Method A 4-year-old child with CCN who uses a speech-generating device and her four family members participated in the study. A single-case multiple-probe design across the four dyads was used to determine the effect of the memory aid, namely, Prepare, Show, Wait, and Respond, via telepractice intervention to teach family members to provide aided language modeling with fidelity during natural routines. Results We found that telepractice-based training and coaching increased family members' high-fidelity models and rate of modeling. The target child also showed an increase in independent communication and rate of augmentative and alternative communication use. Social validity interviews indicated that the participants found the intervention to be socially valid. Conclusions Given the findings of this study, speech-language pathologists should encourage the involvement of the whole family in augmentative and alternative communication interventions. Future research should examine the impact of training and coaching all family members together in their natural environment, explore specific adaptations for participants, and investigate the effects of intervention delivered by speech-language pathologists who work directly with families and utilize family-centered practices.

Adaptation to Technology Use in Families of Children With Complex Communication Needs: An Integrative Review and Family Theory Application.

Families with children who have developmental disabilities and complex communication needs (CCNs) face challenging demands affecting family adaptation. Many children with CCNs use augmentative and alternative communication (AAC) devices to support communication, yet little is known about family adaptation to such technology. To fill this gap, an integrative review, guided by the Resiliency Model of Family Stress, Adjustment, and Adaptation was conducted to assess conceptual foundations and the state of the science of family adaptation among children utilizing AAC. Web-based searches were conducted using the Preferred Reporting Items for Systematic Reviews and Meta-Analysis and the Mixed Methods Appraisal Tool. Thirty-three studies met eligibility. Findings demonstrated that to enhance the science underpinning family adaptation to AAC use, future research should be grounded conceptually and address important components of the Resiliency Model. Work in this emerging area will identify and facilitate nursing efforts to assist families as they adapt to communication technology.

Inclusive Preschool Practitioners' Implementation of Naturalistic Developmental Behavioral Intervention Using Telehealth Training.

This single-case investigation was designed to evaluate the effects of telehealth training on practitioner implementation of a naturalistic developmental behavioral intervention (NDBI). Six general education preschool practitioners engaged in an intervention with six children with varying disabilities in inclusive classroom settings. The telehealth training package included a collaborative approach to intervention planning, online training module, video self-evaluation, and performance feedback via videoconferencing. Following telehealth training, practitioners reached criteria for implementation fidelity and increased communication opportunities. Additionally, child participants increased communication behaviors above baseline levels. All behaviors generalized to a different activity context and maintained over time. Social validity was measured and results suggest high levels of acceptability for the telehealth training package.