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The Capital Region of Denmark - a part of Copenhagen University Hospital
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"I Cry. I Simply Cry." An Ethnography of a Lymphedema Summer Camp

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. LIMPRINT in Italy

    Research output: Contribution to journalJournal articleResearchpeer-review

  3. 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. LIMPRINT in Italy

    Research output: Contribution to journalJournal articleResearchpeer-review

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

    Research output: Contribution to journalJournal articleResearchpeer-review

  • Alison Edgley
  • Martina Sykorova
  • Elodie Stasi
  • Roberto Bartoletti
  • Dario Roccatello
  • Meadbh Mac Sweeney
  • Hélène Pourquier
  • Susie Murray
  • Sandrine Mestre
  • Aimee Aubeeluck
  • Sara Rowan
  • Isabelle Quéré
  • Christine J Moffatt
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Background: The aim of this study was to explore how self-management is taught, learnt, and experienced during a 3-day educational Lymphedema Camp for parents of children with lymphedema. Methods: Participants (professionals, parents, and children) were observed during camp activities and interviewed informally and formally in focus groups. The embodied nature of the experience expressed by professionals, parents, and researchers became the analytical focus for understanding the felt tensions in the teaching and learning of self-management to families. Findings: The affective sensibilities associated with the uncertainties involved in teaching and learning self-management skills were palpable given that: young people are now expected to take up strict time-consuming self-management regimens (often via the support of a parent) where "evidence-based" outcomes are uncertain or may not match the outcomes wanted by a young person (varying in age and therefore ability or willingness to engage); or where there are tensions within the family; and the variety of different professionals involved means that techniques varied but where these professionals also lacked the necessary skills training to guide them in how to teach self-management. An analytical focus on the distress, doubt, fear, loneliness, guilt, and moralism felt by professionals, parents, and the researchers supports us to identify the character of the problems associated with performing best practice care guidance where there is a lack of practical support or resources for how self-management in this population should be achieved. Conclusion: To avoid these issues more training and research are needed on "how" to self-manage and stop victim-blaming that generates tensions and drives a wedge between the carer and the cared-for. When systemic problems get located with individuals (professionals, parents, or children), this directs our attention and understanding away from systems of care that lack coordination, may be under-resourced, and where effective training is absent.

Original languageEnglish
JournalLymphatic Research and Biology
Volume19
Issue number5
Pages (from-to)479-487
Number of pages9
ISSN1539-6851
DOIs
Publication statusPublished - Oct 2021

ID: 73459847