“It’s caused our whole family to enjoy each other:” a family’s perspective on the impact of disability and AAC on the family system

Abstract

This study explored the lived experiences of family members of a focal child (Nick), a 6-year old child with cerebral palsy who used AAC. The aim of this study was to gain the family system’s perspective on the impact of CP and AAC on their lives and their family system. A qualitative case study design utilized semi-structured interviews of eight members of the family system, including Nick. Participants described how Nick’s intrinsic skills and challenges were a driving force behind life and intervention priorities. Each family member had unique roles and relationships within the family microsystem, as well as influences from the school and community. The family used a variety of communication strategies, including relying on unaided communication to resolve communication breakdowns and planning outings intentionally to make accommodations for Nick and his AAC use. Ultimately, the family perspectives revealed how they were an interdependent family system that adapted to changed circumstances (i.e., the introduction of AAC) to achieve a healthy family homeostasis. Collaborative teaming with families characterized by open communication and an understanding of the demands and needs of family life must be prioritized by professionals implementing AAC in order to ensure optimal communication, participation, and family outcomes.