Rizzo, Roberta, Van Den Bree, Marianne, Challenger, Aimee, Cuthbert, Andrew, Arribas-Ayllon, M., Clarke, Angus and Thompson, Rose
2020.
Co-creating a knowledge base in the “22q11.2 deletion syndrome” community.
Journal of Community Genetics
11
(1)
, pp. 101-111.
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 |
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Date Type: | Publication |
Status: | Published |
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: | 03 Dec 2021 02:08 |
URI: | https://orca.cardiff.ac.uk/id/eprint/122900 |
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