PT  - JOURNAL ARTICLE
AU  - Lisa Marie Ballard
AU  - Elizabeth Jenkinson
AU  - Christopher D Byrne
AU  - Jenny C Child
AU  - Hazel Inskip
AU  - Oluwakemi Lokulo-Sodipe
AU  - Deborah J G Mackay
AU  - Emma L Wakeling
AU  - Justin Huw Davies
AU  - I Karen Temple
AU  - Angela Fenwick
TI  - Experiences of adolescents living with Silver-Russell syndrome
AID  - 10.1136/archdischild-2020-321376
DP  - 2021 Dec 01
TA  - Archives of Disease in Childhood
PG  - 1195--1201
VI  - 106
IP  - 12
4099  - http://adc.bmj.com/content/106/12/1195.short
4100  - http://adc.bmj.com/content/106/12/1195.full
SO  - Arch Dis Child2021 Dec 01; 106
AB  - Objective The psychosocial impact of growing up with Silver-Russell syndrome (SRS), characterised by growth failure and short stature in adulthood, has been explored in adults; however, there are no accounts of contemporary lived experience in adolescents. Such data could inform current healthcare guidance and transition to adult services. We aimed to explore the lived experience of adolescents with SRS.Design/setting/patients In-depth, semi-structured interviews were conducted between January 2015 and October 2016 with a sample of eight adolescents aged 13–18 (five girls) with genetically confirmed SRS from the UK. Qualitative interviews were transcribed and coded to identify similarities and differences using thematic analysis; codes were then grouped to form overarching themes.Results We identified four themes from the interview data: (1) the psychosocial challenges of feeling and looking different; (2) pain, disability and fatigue; (3) anticipated stigma; and (4) building resilience and acceptance. Despite adolescents accepting SRS in their lives, they described ongoing psychosocial challenges and anticipated greater problems to come, such as stigma from prospective employers.Conclusions Adolescents with SRS may experience psychosocial difficulties from as young as 10 years old related to feeling and looking different; pain, disability and fatigue; anticipated stigma; and future challenges around employment. We discuss these findings in relation to recommendations for the care of adolescents with SRS to prepare them for adult life.No data are available. We are still using unpublished data to write more papers after which we will look into storing the transcripts on the UK data archive.