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Co-creating a knowledge base in the “22q11.2 deletion syndrome” community

Rizzo, Roberta, Van Den Bree, Marianne, Challenger, Aimee, Cuthbert, Andrew, Arribas-Ayllon, M., Clarke, Angus and Thompson, Rose 2019. Co-creating a knowledge base in the “22q11.2 deletion syndrome” community. Journal of Community Genetics 10.1007/s12687-019-00425-8

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Abstract

22q11.2 DS is characterised by its variability, rarity and variety of features ranging from congenital heart conditions to psychiatric and behavioural issues. As a result, health information–seeking behaviour is different from other more common conditions. An exploratory study was carried out to understand how parents access information and support, and how that information is shared. Qualitative interviews were carried out with families and support group representatives, and thematic analysis was applied. Four main themes emerged from our findings: perceptions of clinical expertise, parent empowerment, support group activities and community building via an Internet platform. Our thematic analysis enabled the construction of a possible model of information-seeking behaviour in parents and carers of children with 22q11.2 DS. We discuss the model and how the understanding of how information is shared and gathered can aid in clinical practice.

Item Type: Article
Date Type: Published Online
Status: In Press
Schools: Medicine
Psychology
Social Sciences (Includes Criminology and Education)
Publisher: Springer
ISSN: 1868-310X
Date of First Compliant Deposit: 28 May 2019
Date of Acceptance: 9 May 2019
Last Modified: 04 Jun 2019 10:11
URI: http://orca-mwe.cf.ac.uk/id/eprint/122900

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