Exploring parental perspectives of participation in children with Down Syndrome

Abstract

The everyday lives of children with disabilities are not well understood, with few studies exploring how participation in everyday life is conceptualized and given meaning. The overall aims of this study were, first, to explore parental views of their children’s participation and, second, to identify barriers and facilitators in relation to participation in everyday activities. A qualitative research strategy was adopted, whereby parents of children with Down syndrome (DS) aged 6–12 years were selected using purposive sampling. Five interviews with seven participants were audio-recorded and analysed using a framework approach whereby the overall research aims guided the analysis. Analysis of the data identified two main themes and seven sub-themes. The first theme was the value of participation. Parents reported that through participation in activities, their children developed skills that in turn enhanced their well-being and sense of belonging. The second theme was barriers and facilitators of participation, which included four subthemes: child factors, attitudes and views of others, modifications to the environment and logistical issues. Findings also illustrate how the child and his/her physical, social and attitudinal environments are inherently intertwined, with parents identifying the influence of several interacting factors on their child’s participation in everyday activities. This study supports the view that while frameworks like the ICF have an important role in understanding disability, they need to be supplemented with personal experiences of children and others in their lives. Speech and language therapists need to consider activities and participation both from the perspective of factors within children themselves and also from the point of view of barriers and facilitators in the children’s environment.

Family Variables and Quality of Life in Children with Down Syndrome: A Scoping Review

“…Twenty-three studies indicated that the data came from parents or caregivers [ 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 ]. Authors of 16 studies reported that the mother was the sole respondent for all data [ 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 , 65 ].…”

“…Family Demands and Children’s Social Participation. Lyons et al [ 42 ] explored which barriers influenced activities and participation in everyday activities among children with DS (social inclusion). Choi and Yoo [ 33 ] examined how parental depression and family strain were related to stigma/discrimination experiences of children with DS (rights).…”

Creating play opportunities on the school playground: Educator experiences of the Sydney playground project

“…Outdoor play affords children opportunities to develop independence, self‐determination and physical skills (Stephenson, ), and foster a sense of wellbeing and belonging (Bundy et al, ; Lyons, Brennan, & Carroll, ). The inclusion of loose materials, opportunities for risk and unstructured time can increase the inclusivity of play (Barbour, ; Bundy et al, ).…”

Supporting children with Down syndrome within mainstream education settings: parental reflections

“…However, inclusion is a complex area (Lightfoot and Bond 2013) and there are recognised barriers to the successful inclusion of pupils with DS, including negative attitudes from both peers and teaching staff (Fox et al 2004). Research (Boys 2003: Lyons et al 2016 identifies the lack of support from educational staff for children with DS as being the result of insufficient knowledge around the needs of individuals and limited professional development opportunities regarding inclusive practice (Mulholland and O'Connor 2016). Furthermore, Hodkinson (2010) opines that there is a link between inclusion and academic accountability, suggesting that league tables and examination results can lead to a reluctance to include individuals with learning disabilities in mainstream settings.…”