A Study to Explore the Professional Conceptualization and Challenges of Self-Management in Children and Adolescents with Lymphedema

Christine Moffatt, PhD, MA, RGN, CBE,1,2 Aimee Aubeeluck, PhD, MSc, BA,3 Elodie Stasi, PhT,4 Meadbh Macsweeney, RGN, RSCN, MPN,5 Fabienne Mourgues, RN,2 He´le`nePourquier,PhT,2 Chantal Lapointe, BSc,6 Sandrine Mestre, MD, PhD,5 and Isabelle Que´re´, MD, PhD5. LYMPHATIC RESEARCH AND BIOLOGY Volume 17, Number 2, 2019

Read the full paper here

Main findings

  • The purpose of the study was to explore the challenges professionals face when introducing selfmanagement to children and adolescents with lymphedema and their parents and to explore their own sense of self-efficacy in approaching this.
  • The research allowed in-depth discussion about the ways they conceptualize self-management and faced professional challenges.
  • The research highlighted the need to define what is considered an acceptable outcome within a complex and uncertain condition and the self-management strategies that are needed to support this.
  • The research has shown an urgent need to address the following issues:
    • Develop multidisciplinary services for children in all countries.
    • Provide clarity on self-management strategies in lymphedema.
    • Define a range of outcome parameters that extend beyond control of swelling to psychosocial health.
    • Educate health professionals about the reality of managing a child or adolescent with lymphedema.
    • Develop and evaluate low-intrusion self-management programs that incorporate self-efficacy assessment.