Achieving self-management of prophylactic treatment in adolescents: The case of haemophilia. Issue 7 (July 2016)

• Record Type: Journal Article
• Authors: Schrijvers, Liesbeth; Beijlevelt-Van der Zande, Marlène; Peters, Marjolein; Lock, Janske; Cnossen, Marjon; Schuurmans, Marieke; Fischer, Kathelijn
• Is Part Of: Patient education and counseling. Volume 99:Issue 7(2016)
• Page Start: 1179
• Page End: 1183
• Publication Date: 2016-07
• Subjects: Prophylaxis -- Transition -- Self-infusion -- Home treatment -- Learning -- Responsibility; Patient education -- Periodicals; Health counseling -- Periodicals; Health education -- Periodicals; Counseling -- Periodicals; Patient Education -- Periodicals; Éducation des patients -- Périodiques; Counseling -- Périodiques; Éducation sanitaire -- Périodiques; 615.5071
• DOI: 10.1016/j.pec.2016.01.016
• Languages: English
• ISSNs: 0738-3991

Abstract

Highlights: The process of achieving self-management skills in adolescents have never been studied before in chronic diseases. Achieving self-management skills in adolescents is a gradual process of approximately 10 years. This process mostly coinciding with the reported stages of adolescence. Complete self-management was achieved at the age of 23 years old. Abstract: 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.