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Lived experience of Silver-Russell syndrome: Implications for management during childhood and into adulthood

Ballard, Lisa M.; Jenkinson, Elizabeth; Byrne, Christopher. D; Child, Jenny. C; Davies, Justin. H; Inskip, Hazel; Lokulo-Sodipe, Oluwakemi; Mackay, Deborah J.G; Wakeling, Emma. L; Temple, I. Karen; Fenwick, Angela

Authors

Lisa M. Ballard

Christopher. D Byrne

Jenny. C Child

Justin. H Davies

Hazel Inskip

Oluwakemi Lokulo-Sodipe

Deborah J.G Mackay

Emma. L Wakeling

I. Karen Temple

Angela Fenwick



Abstract

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2019. All rights reserved. No commercial use is permitted unless otherwise expressly granted. Objective There is limited information on the psychosocial impact of growing up with Silver-Russell syndrome (SRS), characterised by slow growth in utero leading to short stature in adulthood. Such information could aid families in making difficult treatment decisions and guide management strategies for health professionals. We aimed to explore the lived experience of people with SRS across the lifespan. Design/setting/patients In-depth, semi-structured interviews were conducted between January 2015 and October 2016 with a sample of 15 adults (six women) with genetically confirmed SRS from the UK. Qualitative interviews were transcribed and coded to identify similarities and differences: codes were then grouped to form overarching themes. Results Four themes were identified from participant accounts: (1) appearance-related concerns extending beyond height; (2) strategies to deal with real and perceived threats; (3) women's experiences of pain, disability and feeling older than their years; and (4) feeling overlooked in romantic relationships. These themes show that other factors, beyond short stature, affect patient well-being and indicate a mismatch between patient need and healthcare provision. Conclusions Challenges in SRS during childhood and adolescence were central to the psychosocial impact of SRS, and were not limited to height. These challenges, as well as symptoms such as pain and fatigue for women, have not previously been documented. To help individuals with SRS develop strategies to manage psychosocial issues, we recommend clinicians incorporate psychological services as an integral part of multidisciplinary teams managing individuals with SRS during childhood, adolescence and adulthood.

Journal Article Type Article
Publication Date Jan 1, 2019
Journal Archives of Disease in Childhood
Print ISSN 0003-9888
Electronic ISSN 1468-2044
Publisher BMJ Publishing Group
Peer Reviewed Peer Reviewed
Volume 104
Issue 1
Pages 76-82
APA6 Citation Ballard, L. M., Jenkinson, E., Byrne, C. D., Child, J. C., Davies, J. H., Inskip, H., …Fenwick, A. (2019). Lived experience of Silver-Russell syndrome: Implications for management during childhood and into adulthood. Archives of Disease in Childhood, 104(1), 76-82. https://doi.org/10.1136/archdischild-2018-314952
DOI https://doi.org/10.1136/archdischild-2018-314952
Keywords Russell-Silver, appearance, psychology, visible difference, growth, health, qualitative
Publisher URL https://doi.org/10.1136/archdischild-2018-314952
Additional Information Additional Information : This is the accepted version of the article published in Archives of Disease in Childhood. the final version can be found at https://doi.org/10.1136/archdischild-2018-314952

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