The Information Gap for Children and Young People with Acquired Brain Injury

ABSTRACT

Statement of Purpose: This study explored the information requirements of children/youth with an acquired brain injury.

Methods: An online survey (n = 16), focus group (n = 5) and in-depth semi-structured interviews (n = 3) elicited the views of 24 children/youth with ABI. A priori thematic coding was used to analyze the data.

Results: Five themes emerged: stage and age, school, friendship and peers, delivery methods and information content. The desired information changes over time depending on age and time since the injury. Children/youth want their friends and teachers to access information on brain injury. Children/youth want information delivered through a range of channels, including videos (featuring genuine case studies), apps and board games. Children/youth wanted information specific to their injury, information on brain injury more generally, and practical strategies for overcoming problems.

Conclusions: Children/youth with ABI were able to express views about their information needs, which change over time and include a range of channels.

KEYWORDS:

• Information
• children
• youth
• acquired brain injury

Acknowledgments

Thanks to all of the children, young people, and families who took part in this study. Thanks to XXX for supporting this research project. Thanks to Irwin Mitchell for hosting the focus group in their London offices.