A study to explore the parental impact and challenges of self-management in children and adolescents with lymphedema

Moffatt, C. ORCID: 0000-0002-2436-0129, Aubeeluck, A., Stasi, E., Bartoletti, R., Aussenac, C., Pourquier, H., Roccatello, D. and Quere, I., 2019. A study to explore the parental impact and challenges of self-management in children and adolescents with lymphedema. Lymphatic Research and Biology, 17 (2), pp. 245-252. ISSN 1539-6851

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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 complex problem solving, despite parents believing that they are not adequately prepared for this.

Item Type: Journal article
Publication Title: Lymphatic Research and Biology
Creators: Moffatt, C., Aubeeluck, A., Stasi, E., Bartoletti, R., Aussenac, C., Pourquier, H., Roccatello, D. and Quere, I.
Publisher: Mary Ann Liebert
Date: 22 April 2019
Volume: 17
Number: 2
ISSN: 1539-6851
Identifiers:
NumberType
10.1089/lrb.2018.0077DOI
Divisions: Schools > School of Social Sciences
Record created by: Jonathan Gallacher
Date Added: 06 Mar 2019 10:43
Last Modified: 24 Sep 2019 14:12
URI: http://irep.ntu.ac.uk/id/eprint/35900

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