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

Abstract

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

Citation

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. https://doi.org/10.1089/lrb.2018.0077

• 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
• DOI: https://doi.org/10.1089/lrb.2018.0077
• Keywords: lymphedema, lymphoedema, quality of life, self-management, self-efficacy, parent
• Public URL: https://nottingham-repository.worktribe.com/output/1761219
• Publisher URL: https://www.liebertpub.com/doi/10.1089/lrb.2018.0077