A Study to Explore the Parental Impact and Challenges of Self-Management in Children and Adolescents Suffering with Lymphedema

Christine Moffatt, PhD, MA, RGN, CBE,1,2 Aimee Aubeeluck, PhD, MSc, BA,3 Elodie Stasi, PhT,4 Roberto Bartoletti, B Phys,5 Christine Aussenac, Psychol,2 Dario Roccatello, MD,5 and Isabelle Que´re´, MD, PhD2. LYMPHATIC RESEARCH AND BIOLOGY Volume 17, Number 2, 2019

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Main findings

  • Participants were recruited during an educational camp for children with lymphedema (N=26). Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation.
  • Parental self-management of children with lymphedema is complex and invades many aspects of life.
  • Lack of professional agreement over what constitutes self-management leads to parental confusion and anxiety.
  • Self-management is demanding, and parents are ambivalent to its effectiveness, but choose to persevere through fear of their child’s condition deteriorating.
  • Self-efficacy is evident in complex problem solving, despite parents believing that they are not adequately prepared for this.