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The Capital Region of Denmark - a part of Copenhagen University Hospital
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Development of Self-Efficacy Tools for Parents and Professionals Caring for Children and Young People with Lymphedema (ILF Parent SE and ILF Professional SE)

Research output: Contribution to journalJournal articleResearchpeer-review

DOI

  1. Global Knowledge Gaps in Equitable Delivery of Chronic Edema Care: A Political Economy Case Study Analysis

    Research output: Contribution to journalJournal articleResearchpeer-review

  2. "I Cry. I Simply Cry." An Ethnography of a Lymphedema Summer Camp

    Research output: Contribution to journalJournal articleResearchpeer-review

  3. LIMPRINT in Italy

    Research output: Contribution to journalJournal articleResearchpeer-review

  4. Prevalence and Impact of Chronic Edema in Bariatric Patients: A LIMPRINT Study

    Research output: Contribution to journalJournal articleResearchpeer-review

  1. Global Knowledge Gaps in Equitable Delivery of Chronic Edema Care: A Political Economy Case Study Analysis

    Research output: Contribution to journalJournal articleResearchpeer-review

  2. "I Cry. I Simply Cry." An Ethnography of a Lymphedema Summer Camp

    Research output: Contribution to journalJournal articleResearchpeer-review

  3. LIMPRINT in Italy

    Research output: Contribution to journalJournal articleResearchpeer-review

  4. Prevalence and Impact of Chronic Edema in Bariatric Patients: A LIMPRINT Study

    Research output: Contribution to journalJournal articleResearchpeer-review

  • Christine J Moffatt
  • Aimee Aubeeluck
  • Elodie Stasi
  • Roberto Bartoletti
  • Dario Roccatello
  • Meadbh Mac Sweeney
  • Chantal Lapointe
  • Helene Pourquier
  • Susie Murray
  • Sandrine Mestre
  • Isabelle Quéré
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Background: Self-management is a key aspect of lymphedema treatment and self-efficacy is a key factor linked to long-term adherence to treatment. The study aimed to generate self-efficacy scales to support the care of children and adolescents with lymphedema to support self-management. Methods and Results: Parents of children with lymphedema and the professionals caring for them were recruited during a lymphedema educational camp. Six individual semistructured focus groups were undertaken in Italian, French, and English (three for parents and three for professionals) with simultaneous translation. Scale item generation was developed using interpretative phenomenological analysis and adopted Bandura's self-efficacy concept. Two self-efficacy tools were developed from research with 26 parents and 14 professionals. The parental tool (ILF parent SE) has 6 domains and 44 items: school; home and leisure; understanding the condition and treatment, and managing child and parent emotions. The professional tool (ILF Professional SE) has 4 domains and 21 items. This scale has two parts; the first indicates the level of professional autonomy in decision making, and the second covers assessment and treatment, patient understanding, and managing emotional reactions. Both tools adopt a 0- to 100-point scale using a 10-unit interval with 0 (cannot do) through to 100 (high certainty of being able to do). Initial face validity has been undertaken. Conclusion: Self-efficacy has emerged as a complex issue faced by parents and professionals involved with children and young people with lymphedema. By being able to assess the challenges parents face in self-efficacy individualized programs can be developed that will assist families in managing this complex disease and lead to greater well-being. Increased professional self-awareness will help the development of mentorship programs to support professionals dealing daily with the stress of managing a rare disease in which the outcome may be uncertain.

Original languageEnglish
JournalLymphatic Research and Biology
Volume19
Issue number5
Pages (from-to)460-467
Number of pages8
ISSN1539-6851
DOIs
Publication statusPublished - Oct 2021

ID: 73459429