Social Participation of Adolescents with Cerebral Palsy: Trade-offs and Choices

Abstract

This article reports on the findings of a qualitative study about the experiences and perceptions of adolescents with cerebral palsy (CP) in relation to social participation. A phenomenological approach was used to interview 10 adolescents with CP, 17 to 20 years of age, selected using purposeful sampling. An iterative process of data collection and analysis resulted in four themes about social participation. The themes of experience, barriers, and supports, and tradeoffs supported the current view of participation as a dynamic interaction between person and environment. The fourth theme of making choices described the unique challenges facing adolescents with CP in terms of deciding what was most important and meaningful to them now and in their future. Health care professionals can support adolescents as they develop the capacity to make their own decisions during the transition to adult living by ensuring that assessments and interventions address social participation.

“It's the Participation that Motivates Him”: Physical Activity Experiences of Youth with Cerebral Palsy and Their Parents

“…Furthermore, service providers should recognize that regardless of disability, a person's preferences may change over time, especially as they progress into young adulthood. This recommendation is related to the findings of the ASQME study (Stewart et al, 2012), where much of what the adolescent participants with CP had to say about their experiences in activity engagement were typical of youth of any background or ability. This idea was confirmed by youth and parent participants in the current study, who reported that youth with CP just want to have the same opportunities as everyone else.…”

An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: the importance of belonging, fun, and control and choice

“…Other researchers have discussed various factors affecting choice of activity, including making trade-offs [6], apprehension related to activity performance and participation [16], issues of gaining entry [17], and the gaining competency by engaging in fun and important activities [1]. Youth in our study explicitly mentioned trade-offs, wanting to engage in fun activities, and apprehension or worry about factors such as transportation.…”

“…Another direction of interest, highlighted by our awareness that participation is intimately tied to context [3] and our concerns about the meaning of our findings, is the selection of leisure activity settings. Research studies, including ours, have focused on how the environment affects child/youth opportunities and experiences, but little work, other than that by Stewart et al [6] on trade-offs, has examined this relationship in the other direction. Work on psychological selection has linked the selection of activities to the 'anticipation' of experience and optimal experience [1,44].…”

“…; the nature of 'engaging' leisure activities for youth/young adults who are blind [5]; and the social participation experiences and perceptions of adolescents with cerebral palsy [6]. Other than the study by Hynes et al [4], a study of the perceptions of shopping activities involving four young adults with cerebral palsy who used AAC [7], and a study by Agnihotri et al [8], described below, none of the studies involved participants with severe disabilities.…”

School experiences of pupils with physical impairments over time

“…These authors stressed the importance of acknowledging children as active agents negotiating their everyday interactions with peers, adults and services. Their contribution has influenced researchers who increasingly seek the perspectives of children and youth Disability & Society 1077 (Egilson and Traustadóttir 2009a;Egilson and Hemmingsson 2009;Eriksson, Welander, and Granlund 2007;Stalker 2012;Stewart et al 2012). In this context it is of interest to explore how youth with physical impairments understand and interpret their present and past school experiences through a longitudinal lens.…”