The perceptions and experiences of children with lymphoedema and their families

Grant recipient: Nicholas Henschke

Project title: The perceptions and experiences of children with lymphoedema and their families.

Year awarded: 2011

PRF grant: Tagged grant - Lymphoedema Association of Western Australia Research Grant

Snapshot: Childhood lymphoedema is a rare condition and this qualitative study aimed to describe the experiences of young people with lymphoedema including their coping strategies, attitude towards self-management and challenges faced during transition to adult care by children.

The findings: Descriptions from the perspective of the children and adolescents with lymphoedema on the psychosocial challenges they face, developing resilience, taking responsibility for self-management and the transition to adult care were collected. Participants reported they enjoyed taking responsibility for their therapy and personalising their treatment regime, but the transition to adult care often undermined their progress in managing their treatment independently. Frustrating restrictions and social isolation were also described from those undergoing lymphoedema therapy.

Benefits for the profession: These findings can assist physiotherapists working with these children to better understand the broader impacts of the disease on the child’s psychosocial wellbeing, development and family.

The next steps: Future studies are needed to evaluate different models of delivering physiotherapy lymphedema care to children and adolescents. With the results from this study, age-appropriate treatment plans are necessary to address changing emotional consequences of having lymphoedema to improve participation in physical activity and acceptance of their appearance. Further strategies to help empower young patients to advocate for their needs and preferences after transition to adult care is needed.