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A Study to Explore the Professional Conceptualization and Challenges of Self-Management in Children and Adolescents with Lymphedema

Quéré, Isabelle; Moffatt, Christine; Aubeeluck, Aimee; Stasi, Elodie; Macsweeney, Meadbh; Mourgues, Fabienne; Pourquier, Hélène; Lapointe, Chantal; Mestre, Sandrine

Authors

Isabelle Quéré

Christine Moffatt

AIMEE AUBEELUCK aimee.aubeeluck@nottingham.ac.uk
Professor of Health Psychology Education

Elodie Stasi

Meadbh Macsweeney

Fabienne Mourgues

Hélène Pourquier

Chantal Lapointe

Sandrine Mestre



Abstract

Background: 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.

Methods and Results: 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.

Conclusions: 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.

Journal Article Type Article
Publication Date Apr 22, 2019
Journal Lymphatic Research and Biology
Print ISSN 1539-6851
Electronic ISSN 1557-8585
Publisher Mary Ann Liebert
Peer Reviewed Peer Reviewed
Volume 17
Issue 2
Pages 221-230
APA6 Citation Quéré, I., Moffatt, C., Aubeeluck, A., Stasi, E., Macsweeney, M., Mourgues, F., …Mestre, S. (2019). A Study to Explore the Professional Conceptualization and Challenges of Self-Management in Children and Adolescents with Lymphedema. Lymphatic Research and Biology, 17(2), 221-230. https://doi.org/10.1089/lrb.2018.0076
DOI https://doi.org/10.1089/lrb.2018.0076
Keywords Cardiology and Cardiovascular Medicine
Publisher URL https://www.liebertpub.com/doi/10.1089/lrb.2018.0076

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