"I Cry. I Simply Cry." An Ethnography of a Lymphedema Summer Camp.

Background: The aim of this study was to explore how self-management is taught, learnt, and experienced during a 3-day educational Lymphedema Camp for parents of children with lymphedema. Methods: Participants (professionals, parents, and children) were observed during camp activities and interviewed informally and formally in focus groups. The embodied nature of the experience expressed by professionals, parents, and researchers became the analytical focus for understanding the felt tensions in the teaching and learning of self-management to families. Findings: The affective sensibilities associated with the uncertainties involved in teaching and learning self-management skills were palpable given that: young people are now expected to take up strict time-consuming self-management regimens (often via the support of a parent) where "evidence-based" outcomes are uncertain or may not match the outcomes wanted by a young person (varying in age and therefore ability or willingness to engage); or where there are tensions within the family; and the variety of different professionals involved means that techniques varied but where these professionals also lacked the necessary skills training to guide them in how to teach self-management. An analytical focus on the distress, doubt, fear, loneliness, guilt, and moralism felt by professionals, parents, and the researchers supports us to identify the character of the problems associated with performing best practice care guidance where there is a lack of practical support or resources for how self-management in this population should be achieved. Conclusion: To avoid these issues more training and research are needed on "how" to self-manage and stop victim-blaming that generates tensions and drives a wedge between the carer and the cared-for. When systemic problems get located with individuals (professionals, parents, or children), this directs our attention and understanding away from systems of care that lack coordination, may be under-resourced, and where effective training is absent.

Development of Self-Efficacy Tools for Parents and Professionals Caring for Children and Young People with Lymphedema (ILF Parent SE and ILF Professional SE).

Background: Self-management is a key aspect of lymphedema treatment and self-efficacy is a key factor linked to long-term adherence to treatment. The study aimed to generate self-efficacy scales to support the care of children and adolescents with lymphedema to support self-management. Methods and Results: Parents of children with lymphedema and the professionals caring for them were recruited during a lymphedema educational camp. Six individual semistructured focus groups were undertaken in Italian, French, and English (three for parents and three for professionals) with simultaneous translation. Scale item generation was developed using interpretative phenomenological analysis and adopted Bandura's self-efficacy concept. Two self-efficacy tools were developed from research with 26 parents and 14 professionals. The parental tool (ILF parent SE) has 6 domains and 44 items: school; home and leisure; understanding the condition and treatment, and managing child and parent emotions. The professional tool (ILF Professional SE) has 4 domains and 21 items. This scale has two parts; the first indicates the level of professional autonomy in decision making, and the second covers assessment and treatment, patient understanding, and managing emotional reactions. Both tools adopt a 0- to 100-point scale using a 10-unit interval with 0 (cannot do) through to 100 (high certainty of being able to do). Initial face validity has been undertaken. Conclusion: Self-efficacy has emerged as a complex issue faced by parents and professionals involved with children and young people with lymphedema. By being able to assess the challenges parents face in self-efficacy individualized programs can be developed that will assist families in managing this complex disease and lead to greater well-being. Increased professional self-awareness will help the development of mentorship programs to support professionals dealing daily with the stress of managing a rare disease in which the outcome may be uncertain.

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.