“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

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.

本研究聚焦于一名患有脑瘫（cerebral palsy）且使用辅助与替代沟通（Augmentative and Alternative Communication，AAC）的6岁目标儿童尼克（Nick），旨在探究其家庭成员的真实生活体验，并从家庭系统视角解析脑瘫与AAC对其家庭生活及家庭系统的影响。本研究采用质性个案研究设计，对包括尼克在内的8名家庭成员开展半结构化访谈。受访成员均提及，尼克的先天能力与成长挑战是确立家庭生活与干预优先级的核心驱动力。每名家庭成员在家庭微系统中均承担专属角色、维系独特联结，同时受到学校与社区环境的影响。该家庭运用了多元沟通策略，包括依靠非辅助沟通解决沟通中断问题，以及精心规划外出行程以适配尼克及其AAC使用需求。最终，家庭成员的视角揭示出，这是一个相互依存的家庭系统——他们通过调整自身以适应包括引入AAC在内的环境变化，从而维持健康的家庭内稳态。采用AAC的专业人员应优先建立与家庭的协作伙伴关系，秉持开放沟通理念，充分理解家庭生活的诉求与实际需求，以保障实现最优的沟通效果、参与度与家庭发展结果。