Moffatt Christine, Aubeeluck Aimee, Stasi Elodie, Macsweeney Meadbh, Mourgues Fabienne, Pourquier Hélène, Lapointe Chantal, Mestre Sandrine, Quere Isabelle
1 School of Social Sciences, University of Nottingham Trent, Nottingham, United Kingdom.
2 Department of Vascular Medicine, CHU Saint Eloi, University of Montpellier, Montpellier, France.
Lymphat Res Biol. 2019 Apr;17(2):221-230. doi: 10.1089/lrb.2018.0076.
The aim of this study was to explore the professional experience of caring for children and adolescents with lymphedema and to explore the way in which they understand and implement self-management strategies and the influence of their own self-efficacy beliefs on this process. Participants were recruited during an educational camp for children with lymphedema. Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation. Data were analyzed using interpretative phenomenological analysis (IPA). Analysis of the data produced three superordinate themes: professional concepts of self-management, professional practice, and redefining the cornerstone of lymphedema care. An additional seven subthemes were as follows: readiness to self-management, professional perspectives on self-management, defining success and treatment failure, emotional burden, traditional views on complex decongestive therapy, new ways to practice, and sole practitioner versus multidisciplinary teams. The purpose of the study was to explore the challenges professionals face when introducing self-management 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.
本研究的目的是探索照顾淋巴水肿儿童和青少年的专业经验，探讨他们理解和实施自我管理策略的方式，以及他们自身的自我效能信念对这一过程的影响。参与者是在一次淋巴水肿儿童教育营期间招募的。用英语、法语和意大利语进行了三个单独的半结构化焦点小组讨论，并进行同声传译。采用解释现象学分析（IPA）对数据进行分析。数据分析产生了三个上位主题：自我管理的专业概念、专业实践以及重新定义淋巴水肿护理的基石。另外七个子主题如下：自我管理的准备情况、对自我管理的专业观点、定义成功与治疗失败、情感负担、对复杂消肿治疗的传统观点、新的实践方式以及个体从业者与多学科团队。本研究的目的是探讨专业人员在向淋巴水肿儿童和青少年及其父母介绍自我管理时所面临的挑战，以及他们在处理此事时自身的自我效能感。该研究允许就他们将自我管理概念化的方式以及所面临的专业挑战进行深入讨论。该研究强调了在复杂和不确定的情况下定义什么被视为可接受的结果以及支持这一结果所需的自我管理策略的必要性。
