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Published on: February 10, 2021
Living with lymphoedema: children's and young people's perspectives
Melanie Thomas1, Marie Gabe-Walters1, Elizabeth Coveney2
1Lymphoedema Network Wales, Cimla, Wales.
Insights
Children with lymphoedema face challenges with diagnosis and daily management, impacting their well-being. A specialized national paediatric lymphoedema service is valued for providing essential support and understanding.
Area of Science:
- Paediatric Medicine
- Clinical Psychology
- Public Health
Background:
- Lymphoedema presents a chronic, lifelong management challenge impacting physical, psychological, and social well-being.
- Children and young people require specialized services for early diagnosis and treatment of lymphoedema.
Purpose of the Study:
- To investigate the lived experiences of children and young people with lymphoedema.
- To explore family perspectives on living with paediatric lymphoedema.
- To evaluate experiences with the national paediatric lymphoedema service in Wales.
Main Methods:
- Qualitative research approach.
- Semi-structured interviews conducted with 15 families.
- Participants were referred to the national paediatric lymphoedema service in Wales.
Main Results:
- Identified themes include lack of professional awareness, diagnostic delays, the emotional impact of lymphoedema ('being me'), management support, and service benefits.
- Key sub-themes within 'being me' were body image, self-esteem, and loss of control.
- Families highlighted the positive impact of a dedicated national service.
Conclusions:
- Lymphoedema significantly affects daily life, body image, and self-esteem in children.
- Despite challenges, affected children and young people demonstrate resilience.
- Access to a knowledgeable and understanding paediatric lymphoedema service is highly valued.
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.
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