'It's hard but you've just gotta get on with it'--The experiences of growing-up with a liver transplant.
The successful evolution of paediatric liver transplantation means that increasing numbers of young people survive into adulthood. Non-adherence to medication regimens leading to liver dysfunction, graft loss and patient death are prevalent in this vulnerable group. Insight into young people's experiences of living with a liver transplant (LTx) is vital to improve outcomes and guide future work in this area. Through semi-structured interviews, this study explored the experiences of living with a LTx for 13 young people transplanted as children and adolescents. Interviews were analysed using interpretative phenomenological analysis, revealing that young people felt different from their peers as a result of their LTx. Young people's perceptions of their scar, experiences of illness symptoms and taking medications acted as triggers of differences. This led to an ongoing struggle to be normal when faced with typical activities for young people and to attempts to take back control. Findings support the implementation of routine psychosocial screening to identify additional support needs and the development of a peer mentoring programme to allow young people to gain social support, thus reducing feelings of being different. It is hoped that such initiatives will have positive consequences for quality of life, self-management and adherence to medications.
a Liver Unit , Birmingham Children's Hospital NHS Foundation Trust , Birmingham , UK.
Jessica
J
Wright
Laura
L
Elwell
Janet E
JE
McDonagh
Deirdre A
DA
Kelly
Jo
J
Wray
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D001294:Attitude to Health; D005260:Female; D006301:Health Services Needs and Demand; D006801:Humans; D016031:Liver Transplantation / Q000523:psychology*; D008297:Male; D055118:Medication Adherence / Q000523:psychology; D010379:Peer Group; D036301:Qualitative Research; D011788:Quality of Life; D012648:Self Care / Q000523:psychology; D012944:Social Support; D055815:Young Adult
adolescence; interpretative phenomenological analysis; liver transplant; psychosocial