Objective: Adolescents with a chronic disorder, such as haemophilia, need to attain responsibility for their disease. The aim was to gain insight into how adolescents achieve self-management of prophylactic treatment.
Methods: In three Dutch Haemophilia Treatment Centres, adolescents (10-25 years) received structured questions on treatment responsibility and self-management (pre-specified definitions) during routine nursing consultation.
Results: In total, 155 interviews were performed in 100 patients (median age 14.4 years). Self-infusion was initiated at a median age of 12.3 years (IQR 11.5-13.0) and self-management was achieved 9.6 years later, at a median age of 22.6 years. This process included three phases coinciding with known stages of adolescence. In early adolescence, patients acquired the technique of self-infusion (12.3 years) leading to independent self-infusion in middle adolescence (17.2 years). In late adolescence, patients demonstrated an increase in more complex skills, such as bleeding management and communication with the haemophilia physician (19.9-22.6 years).
Conclusion: Although, the first steps in self-management with regard to self-infusion are taken in early adolescence, complete self-management was achieved in late adolescence after almost 10 years.
Practice implications: Insight in this transitional process helps to provide individualized support and emphasizes the need for continued education with regard to self-management skills.
Keywords: Home treatment; Learning; Prophylaxis; Responsibility; Self-infusion; Transition.
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