Purpose: Children with complex communication needs face particular challenges during hospitalization. This study aimed to understand the situation for hospitalized Hong Kong Chinese children with complex communication needs.
Methods: Six group interviews were conducted with 23 participants, including nurses, doctors, adolescents with acquired brain injury, parents of children with acquired brain injury or cerebral palsy, and community-based therapists.
Results: Parents and children reported unmet physical and emotional needs due to lack of communication. Healthcare providers felt that direct communication with children was not essential, expecting that parents serve as proxy in conveying needs. The passive interaction mode of Chinese parents, and their increased vigilance in protecting their children, further reduced opportunities for direct child-healthcare provider interaction. Limited patient communication protocols were reported, while tight hospital space discouraged bedside communication activities and tools. Community therapists who knew these children were not involved in pre-admission handover.
Conclusion: To address the communication barriers, changes in the healthcare, education, and community systems are proposed. Empowerment of the children and parents to promote direct patient-healthcare provider communication, dissemination of simple protocols and bedside communication tools, time allowance for staff to interact with the children, pre-/in-service staff training, and collaboration with community healthcare providers are recommended.
Keywords: Children; complex communication needs; parent vigilance; protocols; proxy; tools; training.