Understanding Body-Based Communication of Physical Discomfort in Non-Verbal Children with Cri-du-Chat Syndrome

Abstract

Background: Communicating physical discomfort is especially important for children with communication disorders, particularly those who are non-verbal. Parents, teachers, and therapists play a key role in recognizing behaviors that signal illness and pain.

Objective: This study aimed to identify and characterize body-based behaviors used by children with Cri-du-Chat syndrome to communicate illness and pain, as reported by their parents.

Methods: A quantitative, survey-based study was conducted with 44 parents of children with Cri-du-Chat syndrome in the United States. Data were collected using an author-designed questionnaire and the Functional Communication Parent Questionnaire (FCPQ). Two physical states were analyzed: feeling sick and pain.

Results: Children most frequently used vocalizations, gestures, and body postures to communicate illness and pain. Illness was mainly expressed through body postures, vocalizations, and sound signals, whereas pain was more often communicated through vocalizations, sound signals, gestures, and pointing. Some children did not intentionally communicate these conditions.

Conclusions: Recognizing behaviors that signal illness and pain may support the rapid identification of poor well-being and help explain a child’s unwillingness to participate in daily, educational, or therapeutic activities. This is important for the child’s safety, autonomy, and more appropriate support in home, educational, and therapeutic settings.