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.

Affordances for Motor Development in the Home Environment for Young Children with and without CHARGE Syndrome

“…A second aim of this study was to examine the relationship between home environment affordances with the age of onset of motor milestones in young children with CHARGE syndrome due to their delays in motor development [32]. Similar to prior research [18][19][20], the results of the present study found significant delays in the acquisition of motor milestones in the children with CHARGE syndrome, such as age of standing and independent walking occurring significantly later than their peers without disabilities. Interestingly, however, age of walking was associated with the number of toys in the home.…”

“…Motor milestones are early motor skills that follow a particular sequence from holding the head up to independent walking. Children with CHARGE syndrome walk an average of 25 months later than their sighted peers [19,20]. One reason for this late onset for independent walking is that children with CHARGE syndrome experience more balance issues compared to their peers without disabilities [21,22].…”

Motor Competence in Children with CHARGE Syndrome

“…Haibach and Lieberman (2013) and Haibach-Beach et al (2020) have found that children with CHARGE syndrome have limited balance ability, which can directly affect performance on locomotor skills. Furthermore, balance was reported by parents of children with CHARGE syndrome as a rate limiter impeding their child’s ability to develop independent walking (Foster et al, 2020). Thus, it is not surprising that the current study found significant negative correlations between age at independent walking and locomotor performance for the children with CHARGE syndrome.…”

“…Children with CHARGE syndrome have additional barriers, such as a variety of medical complications, that often require frequent hospitalizations, multiple surgeries, and long recoveries, which can slow and even impede with natural motor development and educational programming (Hartshorne et al, 2011; Salem-Hartshorne & Jacob, 2005). Foster et al (2020) reported that parents of children with CHARGE syndrome perceived restricted environments, such as hospitals, and even medical equipment, as a cause for motor developmental delay in walking. Even when these children return from their medical leave, they are often excused from physical education for extended periods of time (Hilgenbrinck et al, 2020).…”

Parent perceptions of motor competence in children with charge syndrome

“…Previous research has found that children with CS are delayed in motor competence in comparison to their peers without disabilities (Haibach-Beach et al, 2019;Perreault et al, 2021), which often concerned parents. It has been well documented that children with CS already experience delayed walking (Foster et al, 2020;, balance deficits (Haibach et al, 2013;Haibach-Beach et al, 2020), and vestibular challenges (Möller, 2011), which can contribute to these delays in motor development. As such, children with CS have significantly lower locomotor, ball skills, and total skill scores compared to their peers without disabilities.…”