Children and adolescents’ experiences of primary lymphoedema: semi-structured interview study
Camilla S Hanson, Johanna Newsom, Davinder Singh-Grewal, Nicholas Henschke, Margaret Patterson, Allison Tong. Arch Dis Child 2018;0:1–8
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Children and adolescents’ experiences of primary lymphoedema: semi-structured interview study
Camilla S Hanson, Johanna Newsom, Davinder Singh-Grewal, Nicholas Henschke, Margaret Patterson, Allison Tong. Arch Dis Child 2018;0:1–8
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.
Main findings
- Small sample size of 20 participants.
- This study provides young people’s perspectives on the psychosocial challenges of lymphoedema, developing resilience, taking responsibility for self-management and the transition to adult care.
- Participants enjoyed taking responsibility for their therapy and personalising their treatment regime, but the transition often undermined their progress in managing their treatment independently.
- Decongestive therapy caused frustrating restrictions and social isolation. Adolescents sometimes prioritised their social life and emotional well-being by taking breaks from their treatment.
- There were some differences in experiences by participant age. Younger patients were troubled by missing out on sport and peer rejection, whereas some adolescents/young adults avoided physical activity and expressed more self-consciousness and self doubt about their career opportunities and relationships.
- Coping strategies differed by age, with younger patients embracing their uniqueness and ability to express their individuality through their garments. Older participants expressed gratitude that their condition was not fatal. Age of diagnosis also impacted on acceptance of their treatment, such that participants treated from an early age considered it normal to wear garments every day and came to accept that their lymphoedema would likely be permanent.
- Absolute concordance with daily treatment was unrealistic for patients to achieve, and their parents to enforce. Adolescents often forgot to wear their garments, but also consciously took breaks from their treatment to fit in with their peers or due to frustration with their physically demanding routine, uncomfortable garments and restrictions. They were willing to accept discomfort as a consequence of prioritising their emotional well-being. They felt safe in taking breaks from their garments because they believed they knew their body and could manage increased swelling. However, adolescents feel that their non-adherence is misinterpreted as laziness, rather than a method of coping.
- A limitation of this study was that majority were female.
- Adolescents described a number of challenges in the transition to adult healthcare settings.
- Issues with schooling involved bullying, limited physical activity, self-esteem and symptom management rather than school performance; however, a quantitative assessment of academic outcomes is needed as these outcomes may still impact on learning and academic achievement.
- Age-appropriate treatment plans are needed to address the changing emotional consequences and improve participation in physical activity, acceptance of their appearance. Strategies are needed to empower young patients to advocate for their needs and preferences after their transition. This may lead to improved self-management and well-being throughout adolescence and the transition to adult care.
