{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,4]],"date-time":"2026-05-04T19:16:37Z","timestamp":1777922197212,"version":"3.51.4"},"reference-count":24,"publisher":"SAGE Publications","issue":"5","license":[{"start":{"date-parts":[[2021,10,1]],"date-time":"2021-10-01T00:00:00Z","timestamp":1633046400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2021,10,1]],"date-time":"2021-10-01T00:00:00Z","timestamp":1633046400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Lymphatic Research and Biology"],"published-print":{"date-parts":[[2021,10,1]]},"abstract":"<jats:sec>\n                    <jats:title>Background:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods:<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings:<\/jats:title>\n                    <jats:p>\n                      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 \u201cevidence-based\u201d 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\n                      <jats:italic toggle=\"yes\">how<\/jats:italic>\n                      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\n                      <jats:italic toggle=\"yes\">how<\/jats:italic>\n                      self-management in this population should be achieved.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion:<\/jats:title>\n                    <jats:p>To avoid these issues more training and research are needed on \u201chow\u201d 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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1089\/lrb.2021.0058","type":"journal-article","created":{"date-parts":[[2021,10,21]],"date-time":"2021-10-21T14:57:25Z","timestamp":1634828245000},"page":"479-487","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":3,"title":["\u201cI Cry. I Simply Cry.\u201d An Ethnography of a Lymphedema Summer Camp"],"prefix":"10.1177","volume":"19","author":[{"given":"Alison","family":"Edgley","sequence":"first","affiliation":[{"name":"University of Modena, Modena, Italy."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Martina","family":"Sykorova","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Nottingham, Nottingham, United Kingdom."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elodie","family":"Stasi","sequence":"additional","affiliation":[{"name":"Department of Clinical and Biological Sciences, San Giovanni Bosco Hospital, University of Turin, Turin, Italy."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Roberto","family":"Bartoletti","sequence":"additional","affiliation":[{"name":"Division of Oncology and Dermatological Oncology, Istituto Dermopatico dell'Immacolata IDI-IRCCS, Rome, Italy."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dario","family":"Roccatello","sequence":"additional","affiliation":[{"name":"Dipartimento di Scienze Cliniche e Biologiche, Ospedale San Giovanni Bosco e Universit\u00e0 di Torino, Turin, Italy."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Meadbh","family":"Mac Sweeney","sequence":"additional","affiliation":[{"name":"The Lymph Clinic, The Cork Clinic, Cork, Ireland."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"H\u00e9l\u00e8ne","family":"Pourquier","sequence":"additional","affiliation":[{"name":"National Reference Centre for Rare Vascular Diseases, University Hospital of Montpellier, Montpellier, France."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susie","family":"Murray","sequence":"additional","affiliation":[{"name":"Centre for Research and Implementation of Clinical Practice, London, United Kingdom."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sandrine","family":"Mestre","sequence":"additional","affiliation":[{"name":"Vascular Department, University Hospital, Montpellier, France."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aimee","family":"Aubeeluck","sequence":"additional","affiliation":[{"name":"School of Health Sciences, University of Nottingham, Nottingham, United Kingdom."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sara","family":"Rowan","sequence":"additional","affiliation":[{"name":"University of Modena, Modena, Italy."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1492-9764","authenticated-orcid":false,"given":"Isabelle","family":"Qu\u00e9r\u00e9","sequence":"additional","affiliation":[{"name":"National Reference Centre for Rare and Vascular Diseases, Chu-Montpellier, France."},{"name":"Department of Vascular Medicine, UMR IDESP, Universit\u00e9 de Montpellier, Chu-Montpellier, France."}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2436-0129","authenticated-orcid":false,"given":"Christine J.","family":"Moffatt","sequence":"additional","affiliation":[{"name":"Centre for Research and Implementation of Clinical Practice, London, United Kingdom."},{"name":"Copenhagen Wound Healing Centre, Department of Dermatology, Bispebjerg Hospital, Copenhagen, Denmark."},{"name":"Institute of Nursing and Midwifery Care Excellence, City Hospital, Nottingham University Hospitals NHS Trust, Nottingham, United Kingdom."}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2021,10,15]]},"reference":[{"key":"e_1_3_3_2_2","first-page":"29","article-title":"Hereditary and familial lymphedemas. 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