Abstract
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.