Article

Quality of life (QoL) is an important outcome of health
interventions for children and youth with cerebral palsy (CP). When planning
interventions it is fundamental to understand what constitutes a good QoL, a
subjective construct, and what factors are important to consider from both
parents' and children's perspectives. METHODS: We used a grounded theory
methodology to explore parents' perspectives on the factors that are important
for the QoL of their adolescents with CP. Fourteen parents were interviewed using
a purposeful sampling strategy, followed by theoretical sampling until saturation
was reached. RESULTS: Parents reflected on several important aspects of their
children's QoL. In particular, they described how their trajectories as parents
of a child with a disability have contributed to their adolescents' current
well-being. Over time, parents' hopes for a cure were transformed into hopes for
their child's happiness. This trajectory was influenced by the adolescents'
intrinsic characteristics and the parents' strategies to overcome challenges and
was informed by the parents' and their children's ability to make choices in
pursuit of their preferences. CONCLUSIONS: Adolescents' and parents' accounts
should be considered when planning interventions for adolescents with
disabilities. It is important to consider parents' personal characteristics,
experiences and the strategies that have been proven to be efficacious in
improving their children's QoL and to understand their need to make choices
relating to participation and accessibility in order to promote QoL for this
at-risk population. Implications for Rehabilitation Parents' trajectory on
raising a child with a disability is important for understanding adolescents'
QoL. Parents' characteristics and environmental factors influence adolescents'
well-being. Hope and choice experiences by parents of children with CP are
important for their children's QoL. Transition from pediatric to adult services
are required to address disability-related aspects as well as adolescent needs
for intimacy, sexuality and planning for their future during adolescence.

Langue : ANGLAIS