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.
Highlights
The aim of this study was to explore the professional experience of caring for children and adolescents with lymphedema, a rare disease, 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
Participants (N = 14) were asked to discuss in as much detail as possible how they viewed self-management for children with lymphedema and their parents and how they addressed this within their practice
This study explored the professional experience of caring for children and adolescents with lymphedema, and the ways in which they understood and implemented self-management strategies
Summary
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 selfmanagement strategies and the influence of their own self-efficacy beliefs on this process. Analysis of the data produced three superordinate themes: professional concepts of self-management, professional practice, and redefining the cornerstone of lymphedema care. Conclusions: The purpose of the study was to explore the challenges professionals face when introducing selfmanagement 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
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