Impact of rate limiters and affordances on the developmental milestone of walking in children with CHARGE syndrome

Children with CHARGE syndrome have a significant delay in acquiring developmental motor milestones, including independent walking (Blake et al., 1998; Hartshorne & Cypher, 2004; Hartshorne, Nicholas, Grialou, & Russ, 2007; Travis & Thelin, 2007). CHARGE syndrome is a multifaceted syndrome of complex birth anomalies, which usually includes a degree of vision and hearing loss at birth. The purpose of this investigation was to examine the impact of individual rate limiters and affordances on acquiring the independent walking developmental milestone in children with CHARGE syndrome. The investigation was divided into two phases that were performed concurrently. The participants in Phase I were 62 children with CHARGE syndrome whose information was entered into the CHARGE Syndrome Clinical Database Project (CSCDP) by a parent or primary caregiver. The participants in Phase II were 23 parents or primary caregivers of a child with CHARGE syndrome who acquired independent walking.

In Phase I, the CSCDP was used to obtain the following information: left and right eye vision levels; left and right ear decibel loss; balance problems; occurrence of 5-point crawling; occurrence of back scooting; type of hearing loss; and small or absent semicircular canals in the left and right ear. An analysis of covariance, analysis of variance, and multiple regressions were performed to analyze the data. Based on the results, an increase in the severity of vision loss and hearing loss significantly delayed the attainment age of independent walking in children with CHARGE syndrome. Furthermore, right eye acuity levels and left ear decibel loss were significant predictors on the attainment age of independent walking.

In Phase II, semi-structured interviews were used to acquire the parents’ or primary caregivers’ perspective on rate limiters or affordances related to the attainment of independent walking in their child with CHARGE syndrome. Interviews were transcribed and then analyzed using thematic analysis based on the research questions and the dynamic systems theory. Additional individual, environmental, and task constraints were reported that encouraged or hindered the attainment of independent walking. Within the limitations of this investigation, the conclusions were drawn that the findings supported the dynamic systems theory.