https://orcid.org/0000-0003-4779-5616
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Abstract
Purpose
This paper authentically represents the voices of non-verbal children with cerebral palsy using a case study design. Policy suggests that children should have the right to play and leisure opportunities, however non-verbal children with cerebral palsy have fewer choices. Additionally, children with communication, learning and mobility limitations are usually excluded from research. The aim of this research was to capture the voices of non-verbal children by exploring their well-being impact in terms of their experiences and choices about their level of participation in recreational activities.
Methods
A qualitative case series study included interviews, observations, photographs and diaries. Where possible, the diaries were completed by both caregivers and children. Data were analysed thematically, and the lens of positioning theory applied.
Results
Seven children aged nine to sixteen years participated. The findings showed how equipment, people and environments enabled or hindered the children’s participation. The children also advocated as champions for their own well-being. Positioning theory was applied across the data and was adapted offering a way to better understand the children’s well-being responses.
Conclusion
The findings demonstrate how these children were able to self-advocate, demonstrating their well-being by their intentional behaviours from their level of participation in a recreational activity.
WHAT THIS STUDY ADDS TO KNOWLEDGE
The voices of non-ambulant and non-verbal children are underrepresented in the literature. This study offers an innovative approach to highlight their voices using visual data. The images project the narrative about their choices for participation in recreational activities. The proposed kaleidoscope of well-being offers a way to demonstrate the fluctuations in their emotional responses from their participation.
IMPLICATIONS FOR REHABILITATION
Choices for participation in recreational activities remains limited for non-ambulant and non-verbal children with cerebral palsy.
Designers and policy makers should consider how equipment and environments can be adapted or created to increase the choices for non-ambulant and non-verbal children with cerebral palsy.
Practitioners in health and social care should consider how to listen to the voices of non-verbal and non-ambulant children with cerebral palsy and their parents/guardians and work towards jointly setting participation goals to affirm their strengths.
Disclosure statement
No potential conflict of interest was reported by the author(s).