Opinions of Book Aiming to Increase Participation in Children with CP
Research type
Research Study
Full title
Parents’ and Professionals’ Opinions of a New Children’s Book aimed at Increasing Understanding and Participation in Children with Four Limb Cerebral Palsy
IRAS ID
145160
Contact name
Nicky Wood
Contact email
Research summary
Research findings indicate that children affected by the neurological condition cerebral palsy (CP) often face barriers to participation in many aspects of life, such as education, personal care and recreation (Parkes et al. 2010). Furthermore, these children experience barriers to fully understanding their condition (Abernathy & Taylor, 2009), often with negative consequences (Connors & Stalker, 2007). The findings of our previous study (Wood et al., in submission) are in line with this: parents of children with CP, and the professionals working with them, reported that these children had significant gaps in their knowledge about their condition. They reported the lack of current resources available to facilitate discussion around this, and so were unsure of the best way to approach the issue. They suggested development of a new resource to facilitate communication and understanding. Participants indicated that this should be available as a story book and a technology based resource and should include an explanation of CP and its causes, prognosis, the need for equipment and the need for treatment as well as information about the future. They indicated that it should facilitate children in accessing information so they can make more autonomous decisions in their lives.
This story book resource has since been developed using the findings from our previous project. The present study aims to gather opinions about this book from the participants of the previous study via focus groups. It aims to ascertain opinions about content, narrative style, overall usefulness of the book, as well as to identify if any important aspects are missing. We aim to use these evaluations in order to refine and improve the book before production.
REC name
Yorkshire & The Humber - Leeds East Research Ethics Committee
REC reference
14/YH/0037
Date of REC Opinion
29 Jan 2014
REC opinion
Favourable Opinion