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

Lymphat Res Biol 2019 Apr;17(2):245-252

2 Department of Vascular medicine, CHU Saint Eloi, University of Montpellier, Montpellier, France.

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. Participants were recruited during an educational camp for children with lymphedema ( = 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. 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.

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Source
https://www.liebertpub.com/doi/10.1089/lrb.2018.0077
Publisher Site
http://dx.doi.org/10.1089/lrb.2018.0077DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6636671PMC

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April 2019
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