"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 Snapshot of Lymphedema in Ireland: Results from LIMPRINT.

Background: To estimate the prevalence and impact of chronic edema (CE) in two Irish health care settings as part of LIMPRINT, an international study developed and co-ordinated by the International Lymphoedema Framework (ILF), and researched in Ireland by the National Lymphoedema Framework Ireland (NLFI). Methods and Results: Data were collected using clinical assessment tools previously validated by the ILF. Three hospital settings were chosen, both an in-patient and out-patient oncology unit in Galway and a vascular out-patient unit in Dublin. Patients attending an oncology clinic or in an in-patient ward on a specified day were invited to participate as desired, and all patients attending vascular out-patients for a 4-week period were included in the study. All patients were assessed for the presence of CE, and if present, patients were asked to answer several questionnaires regarding diagnosis, available services, quality of life, and wound care where appropriate. The collection of data was anonymized and was inputted to a central database (Clindex). A total of 152 patients were assessed, 76 from the oncology service and 76 from the vascular service. Eighty-seven (57%) patients were female and 65 (43%) patients were male. The mean age was 65 years with a range 15-93 years. Twenty-five patients (16%) had CE, 8 (11%) in the oncology service and 17 (22%) in the vascular service. All the oncology patients were normal weight while almost 60% (n = 10) of the vascular patients were obese. Two (25%) of the oncology patients had a history of cellulitis, whereas seven (41%) of the vascular patients had a history of cellulitis. Four of the oncology patients (50%) received full lymphedema management whereas two oncology patients (20%) received no treatment at all. In contrast, in the vascular group, only two patients (12%) received full lymphedema management. Eight patients (47%) were receiving no treatment at all and seven (41%) were in compression garments and received skin care advice only. Conclusion: Though number of patients are small, these results highlight the high prevalence of CE in both oncology and vascular service patients as well as the disparities in management. In addition, there is a high incidence of cellulitis reported that is possibly not surprising given the low number of patients receiving full lymphedema care. Good data collection is essential if we are to provide and fund a comprehensive service in the future.