A Study Using Visual Art Methods to Explore the Perceptions and Barriers of Self-Management in Children and Adolescents with Lymphedema.

Background: The aims of this study were to explore, using visual art methodology, how children and adolescents perceive their lymphedema and conceptualize the barriers and enablers in self-management and to explore the role of an educational camp in promoting self-efficacy. Methods: Participants (speaking English, French, and Italian) were recruited during an educational camp for children with lymphedema. Children and adolescents used different methodologies to depict living and self-managing their condition. Younger children (aged 5-12 years) drew pictures, and all children and adolescents (aged 5-18 years) were given cameras and asked to take photographs that depicted their experience of learning self-management of their condition during the camp. Rose's critical visual methodology framework was used for analysis. Results: Analysis of the data produced five categories: Normal versus altered childhood, living with lymphedema; perceptions of lymphedema and self-care in younger children; adolescents' perception of living and managing lymphedema; learning self-efficacy; and insights into cultural differences in self-care. Conclusions: The study has shown that self-management is complex. Children and adolescents face many daily challenges and frustrations in managing their condition in addition to the normal challenges of development and growth that impact on: home life, time with friends, school activities, and relationships. Children expressed a deep longing for cure and a recognition that their lives were altered by having the condition that led to limitations in sport and wearing fashionable clothes and shoes. The importance of relationships with professionals was critical as was the experience of meeting and learning with other children through the camp experience. Attempts to simplify self-management techniques would appear to be a key priority as would a greater understanding of the self-beliefs young people have of their ability to influence and control their condition and its impact on their life.

A Study to Explore the Professional Conceptualization and Challenges of Self-Management in Children and Adolescents with Lymphedema.

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.

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

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.