Parents’ Perceptions of Motor Interventions for Infants and Toddlers with Down Syndrome

Abstract

The purpose of the study was to analyze parents' perceptions of their participation in a university-directed, parent-implemented, home-based pediatric strength intervention program as (a) one approach to evaluating the effectiveness of a program conducted over a 4-year period with families of infants and toddlers with Down syndrome and (b) a means of deriving guidelines for future early intervention programs. Participants were 22 parents from 11 families of children with Down syndrome; the children ranged in age from 6 to 42 months. Participatory evaluation research, semistructured audio recorded home interviews, and qualitative content analysis were used. The results indicated that the parents (a) perceived themselves as being empowered to implement the program, (b) perceived their expectations about improved motor development of their children had been met, and (c) perceived the program was worthwhile. The parents' perceptions provided meaningful evaluation data that enabled the development of guidelines for future pediatric strength intervention programs.

Parents’ perceptions of health and physical activity needs of children with Down syndrome

“…Programmes that are guided by family systems theory hold much potential for immediate and long-term success [46] . Many of the suggestions given by the parents in this group were components of other successful home-based programmes for children with Down syndrome [44,45] , such as: individualised assessment; individualised written exercise plans that could be implemented within the family context and allow for choices and substitutions; written and pictorial descriptions of the exercises; an implementation log; and a system for feedback and reinforcement. One mother wrote this summary comment on the transcript of the elementary age focus group, "In this realm of physical activity it's all about cost, location, timing, meeting programme requirements, and often 'Do I have to invent/reinvent the wheel to make it happen?'".…”

“…The parents in one focus group identified a need for home-based interventions. Home-based physical activity interventions have been found effective with 7-to 14-year-old children with cystic fibrosis [42] , children with mental retardation [43] , and infants and toddlers with Down syndrome [44,45] . Programmes that are guided by family systems theory hold much potential for immediate and long-term success [46] .…”

A different head? Parental agency and early intervention

“…A major part of early intervention programmes is assisting parents in their development as teachers or co-interventionists (Sayers, Cowden & Sherrill, 2002, Kaiser, Hancock, & Hester, 1998, Bronfenbrenner, 1974. Particularly important is the way in which services generate more effective interactions between parents and their children (Mahoney & Wheedon, 1997).…”

Reported Sensory Processing of Children with Down Syndrome

“…Nommensen and Maas (1993) and Uyankik and colleagues (2003) studied the effects of vestibular stimulation, and a combination of vestibular stimulation, sensory integrative therapy, and neurodevelopmental therapy, respectively, on children with DS. Literature corresponding to parental perceptions of the various challenges their children with DS experience primarily focuses on social factors such as access to health care, parental satisfaction with service delivery, political barriers, future vocational opportunities, and access to social supports throughout their child's life span (Hanson, 2003;Law et al, 2003;Sayers, Cowden, & Sherrill, 2002).…”