Family involvement and support is critical for adolescents with developmental disabilities (DD) who often have complex communication needs, such as autism and/or Down syndrome. Adolescents with DD benefit from augmentative and alternative communication (AAC) technology to support communication. Although family involvement is vital to successful AAC utilization, limited research has examined family factors associated with adaptation. The purpose of this dissertation was to examine factors associated with family adaptation to AAC among families of adolescents with autism and/or DS. Dissertation aims: (1) evaluate the state of the science on family adaptation among children/adolescents with DD utilizing an AAC device for communication; (2) examine associations between parental/adolescent characteristics and family functioning based on the frequency of AAC device use by the adolescent; and (3) qualitatively explore parent-reported contributing factors of family adaptation among adolescents' using AAC. This dissertation used a three-manuscript format. Manuscript one is an integrative review to assess the state of the science on family adaptation of children with DD utilizing AAC devices for communication. Five online databases were searched, and 33 articles 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. Manuscripts two and three report data from a cross-sectional mixed-methods study. Families (n=227) of adolescents aged 13-18 years diagnosed with autism and/or DS participated.A family was defined as at least one parent and an adolescent with a DD. Manuscript two examines quantitative findings. Associations between reported parental/adolescent characteristics and family functioning across three distinct groups of families based on frequency (high, mid, low) of their adolescents' AAC device use were evaluated. Descriptive, correlations, and multiple linear regression analyses revealed parental/adolescent characteristics associated with family adaptation were: parental employment and education, younger parents, better adolescent communication function, and type of AAC device. However, after controlling for relevant covariates, adolescent communication function emerged as the only significant predictor of family adaptation. The unadjusted mean family adaptation score for the high-usage group was significantly higher than both the low and mid-usage groups. Findings provide insights into identification of at-risk families and the need for family interventions. Manuscript three examines qualitative data from semi-structured interviews conducted with a sub-sample of eight parents to explore parent-reported factors contributing to family adaptation among adolescents using AAC. Recorded interviews were transcribed, and two independent reviewers coded the data. Five major themes emerged: Contextual Strains and Influences, Continuum of Person-First Approach, Opening Doors, Facilitators of Support, and Planning is Key. Findings revealed not only the challenges parents face in supporting an adolescent with a DD using an AAC device but also attributes, resources, perceptions, and strategies that either contributed or hindered family adaptation. In summary, this mixed methods dissertation guided by an established family nursing framework contributed to the state of the science by examining important but often neglected concepts relative to how families adapt to adolescent AAC use. Findings will contribute to the development of tailored interventions to assist families of adolescents with DD adapt to new communication technologies.
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