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Children and adolescents' experiences of primary lymphoedema: semistructured interview study
Camilla S Hanson1,2, Johanna Newsom3, Davinder Singh-Grewal4,5,6
1Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
Insights
Young patients with congenital lymphoedema (CL) develop resilience and take responsibility for management, but often struggle with self-esteem and lifestyle restrictions. Patient-centered strategies are needed to improve their quality of life.
Area of Science:
- Paediatrics
- Genetics and Genomics
- Immunology
Background:
- Congenital lymphoedema (CL) is a lifelong condition with significant physical and psychosocial impacts on young patients.
- Limited research exists on the lived experiences of children and adolescents with primary CL.
- Understanding patient perspectives is crucial for developing patient-centered care practices.
Purpose of the Study:
- To explore the experiences and views of children and adolescents with primary lymphoedema.
- To inform the development of patient-centered care strategies for young individuals with CL.
- To identify challenges and coping mechanisms in managing CL from the patient's perspective.
Main Methods:
- A qualitative study involving semistructured interviews with 20 patients aged 8-21 years with primary lymphoedema.
- Participants were recruited from two pediatric clinics in Sydney, Australia.
- Thematic analysis was used to analyze interview transcripts.
Main Results:
- Six key themes emerged: reinforcing abnormality, negotiating uncertainties, vulnerability and caution, disruptive transition, developing resilience, and taking responsibility.
- Patients reported damaged self-esteem, self-consciousness, isolation, and fear of condition worsening.
- Resilience was developed through focusing on positives, embracing individuality, and prioritizing coping, alongside taking responsibility for treatment and seeking independence.
Conclusions:
- Young patients with CL adapt to management by individualizing treatment but face ongoing self-esteem and lifestyle challenges.
- Empowering young patients to self-advocate during the transition to adult care is essential.
- Treatment plans should minimize social restrictions, address emotional well-being, and incorporate patient preferences to improve outcomes.
Background:
Congenital lymphoedema is a lifelong condition that has detrimental physical and psychosocial outcomes for young patients and burdensome treatment responsibilities that may hamper patients' motivation for self-management. There is limited research from the perspective of young people with primary lymphoedema. We aimed to describe the experiences and views of children and adolescents with lymphoedema to inform patient-centred practice.
Methods:
Twenty patients (aged 8-21 years) with primary lymphoedema were purposively sampled from two paediatric clinics in Sydney, Australia, to participate in a semistructured interview. The transcripts were analysed thematically.
Results:
We identified six themes: reinforcing abnormality (damaging self-esteem, self-consciousness, frustrating restrictions and isolation); negotiating uncertainties (fearing condition worsening, deprioritised and sidelined, questioning cause and permanence, widespread unawareness); vulnerability and caution (avoiding pain and discomfort, preventing severe and permanent consequences, depending on permission, limiting goals and aspirations); disruptive transition (resisting change, losing progress and support, avoiding treatment costs); developing resilience (focusing on the positives, embracing individuality, recalibrating normality, prioritising coping) and taking responsibility (individualising treatment, needing support, external pressure and motivation, sticking to a routine, seeking independence).
Conclusion:
Children and adolescents learn to adjust to the daily demands of lymphoedema management by individualising and accepting their treatment, but many continue to struggle with their self-esteem and lifestyle restrictions. Strategies are needed to empower young patients to advocate for themselves during their transition to adult care. Treatment plans that minimise social restrictions, address emotional consequences and incorporate patients' preferences could improve adherence, satisfaction and outcomes.