• To recognise the profound physical, social and psychological effects of lymphoedema on the lives of children and young people
• To identify the importance of early diagnosis and referral for assessment and treatment
• To gain a greater understanding of the challenges experienced by children and young people with lymphoedema, and their families
Background Lymphoedema is a chronic condition that requires lifelong, time-consuming and laborious management. It can have significant effects on physical, psychological and social well-being. Children and young people with lymphoedema require access to expert services to aid early diagnosis and referral for assessment and treatment.
Aim To explore the perspectives of children and young people living with lymphoedema and those of their families, as well as their experiences of the national paediatric lymphoedema service in Wales.
Method A qualitative approach was adopted using semi-structured interviews with participants who had been referred to the national paediatric lymphoedema service in Wales.
Findings A total of 15 families were interviewed. Five themes were identified: lack of professional awareness of paediatric lymphoedema; a journey to diagnosis as lost in the system; ‘being me’ – what it feels like to have lymphoedema; managing lymphoedema and feeling supported; and the benefits of a national paediatric lymphoedema service. Two sub-themes were identified within the ‘being me’ theme – body image and self-esteem, and loss of control.
Conclusion Lymphoedema has a profound effect on daily life, body image and self-esteem. Participants tended to be resilient and determined to continue with their lives. Importantly, they valued being under the care of a service that understood their condition.
Nursing Children and Young People. doi: 10.7748/ncyp.2021.e1363Peer review
This article has been subject to open peer review and checked for plagiarism using automated softwareCorrespondence
This work was developed by members of the Lymphoedema Network Wales National Team
Thomas M, Gabe-Walters M, Coveney E (2021) Living with lymphoedema: children’s and young people’s perspectives. Nursing Children and Young People. doi: 10.7748/ncyp.2021.e1363
Acknowledgements We would like to thank the children and young people and their families for contributing to improve and inform future provision. Our personal thanks the Swansea University researchers for completing this study. We hope that this research demonstrates the importance and value of lymphoedema management for children and young people
Published online: 09 August 2021
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