Parents’ Perceptions of Constraints Impacting the Development of Walking in Children with CHARGE Syndrome

Abstract

This study examined parents’ perceptions of constraints that impact the attainment of independent walking in children with CHARGE syndrome. This syndrome is a multifaceted syndrome including a degree of vision and hearing loss at birth. The Dynamic Systems Theory (DST) was used as an ecological lens to provide insight into the complexity of issues impacting independent walking from the parents’ perceptions. Semi-structured interviews were administrated to 23 parents of children with CHARGE syndrome to ascertain the degree to which individual, environmental, or task constraints impacted their child’s development of independent walking. Data analysis was conducted through direct content analysis based on the DST. Parents reported that the task of walking was impacted by individual constraints, both structural and functional, and environmental constraints, such as space, surface area, and the use of furniture. Recommended interventions for professionals who work with children who are deafblind include manipulation and adaptation of environmental and task constraints.