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A Study to Explore the Parental Impact and Challenges of Self-Management in Children and Adolescents Suffering with Lymphedema

Bartoletti, Roberto; Qu�r�, Isabelle; Moffatt, Christine; Aubeeluck, Aimee; Stasi, Elodie; Aussenac, Christine; Roccatello, Dario


Roberto Bartoletti

Isabelle Qu�r�

Christine Moffatt

Professor of Health Psychology Education

Elodie Stasi

Christine Aussenac

Dario Roccatello


Background: Limited research has shown the impact lymphedema has on children and families. The aim of this study was to explore the parental experience of caring for a child or adolescent with lymphedema and the daily challenges of self-management and self-efficacy.

Methods and Results: Participants were recruited during an educational camp for children with lymphedema (N?=?26). Three individual semistructured focus groups were undertaken in English, French, and Italian with simultaneous translation. Data were analyzed using interpretative phenomenological analysis. Analysis identified four superordinate themes; the journey, treatment management, independence, and psychosocial impact. Ten subthemes were identified: bandaging/compression, professional support, holistic care, fear, self-efficacy, acceptance, friendship, guilt, distress, and hope.

Conclusions: Parental self-management of children with lymphedema is complex and invades many aspects of life. Lack of professional agreement over what constitutes self-management leads to parental confusion and anxiety. Self-management is demanding, and parents are ambivalent to its effectiveness, but choose to persevere through fear of their child's condition deteriorating. Self-efficacy is evident in com


Bartoletti, R., Quéré, I., Moffatt, C., Aubeeluck, A., Stasi, E., Aussenac, C., & Roccatello, D. (2019). A Study to Explore the Parental Impact and Challenges of Self-Management in Children and Adolescents Suffering with Lymphedema. Lymphatic Research and Biology, 17(2), 245-252.

Journal Article Type Article
Acceptance Date Mar 13, 2019
Online Publication Date Apr 22, 2019
Publication Date Apr 22, 2019
Deposit Date Apr 8, 2019
Publicly Available Date May 2, 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 245-252
Keywords lymphedema, lymphoedema, quality of life, self-management, self-efficacy, parent
Public URL
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