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.

Working with Children with Autism Spectrum Disorder in a Medical Setting: Insights from Certified Child Life Specialists.

This study aimed to gain an understanding of Certified Child Life Specialists' (CCLS) experiences with and suggestions for working with children with autism spectrum disorder (ASD) in a medical setting. Using a mixed-method design, 118 CCLS completed an online survey and 16 participated in follow-up interviews. Participants believed many medical professionals, including CCLS, are not adequately prepared to work with children with ASD, negatively impacting quality of care. Participants emphasized that outcomes are best for children with ASD when parents and medical staff collaborate to meet the unique needs of each child. CCLS reported working with children with ASD can provide insights for enhancing the quality of care for all children. Participants' suggestions for training and resource development are discussed.