Understanding is limited of the meaning attributed to behaviors of children with autism spectrum disorder and strategies used to prevent challenging behaviors in the context of hospitalization.
This qualitative study consisted of two focus groups (n = 10; five mothers and five health care providers [HCPs]). Transcripts were analyzed using the qualitative method of narrative inquiry.
The meaning attributed to behaviors by the mothers and the HCPs differed. The mothers attributed behaviors to the child’s communication of frustration, hyperactivity, and self-calming. The HCPs attributed challenging behaviors to self-stimulation and child aggression. Strategies to prevent behaviors also differed. Mothers focused on preparation prior to hospitalization and attempts to partner with HCPs. HCPs identified fewer strategies and consulted mothers for strategies to manage challenging behaviors.
HCP and parent collaboration could lead to strategies to increase supports for children with autism spectrum disorder in the hospital to decrease their frustration and challenging behaviors.
The study reported here is the first to describe both the meaning attributed to the behaviors of children with ASD in the context of hospitalization by mothers and HCPs along with prevention strategies. Mothers described more intense child behaviors in the hospital setting as a result of environmental triggers, underlying co-morbid hyperactivity, and the usual supports (e.g., toys and routines) not being in place. This finding matches literature that reports that triggers in the hospital environment frustrate children with ASD. Likewise, all the HCPs in the study noted challenging behaviors of children with ASD in the hospital environment, but the HCPs attributed different meaning to the behaviors, with no HCPs using the term ‘‘communication of frustration’’ for the meaning of the child’s behavior. HCPs attribute the intensity of behaviors to the severity of the ASD, that is, the level of the child’s social and communicative functioning, with the children functioning at a higher level (i.e., those who can communicate) doing better in the stimulating hospital environment than children who cannot communicate.