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

Abstract

PurposeAlthough 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 methodsSemi-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. ResultsFive themes described aspects of family adaptation: Contextual Strains and Influences, Continuum of Person-First Approach, Opening Doors, Facilitators of Support, and Planning Is Key. ConclusionsFindings 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 implicationsAAC 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.