Liesbeth Schrijvers1, Marlène Beijlevelt-Van der Zande2, Marjolein Peters2, Janske Lock3, Marjon Cnossen3, Marieke Schuurmans4, Kathelijn Fischer5. 1. Van Creveldkliniek, University Medical Centre Utrecht, Utrecht, The Netherlands. Electronic address: L.H.Schrijvers-3@umcutrecht.nl. 2. Haemophilia Treatment Centre, Emma Children's Hospital-Academical Medical Centre Amsterdam, Amsterdam, The Netherlands. 3. Department of Paediatric Haematology, Erasmus Medical Centre-Sophia Children's Hospital, Rotterdam, The Netherlands. 4. Nursing Science, Faculty of Health Care, University of Applied Science, Utrecht, The Netherlands; Nursing Science, University Medical Centre Utrecht, Utrecht, The Netherlands. 5. Van Creveldkliniek, University Medical Centre Utrecht, Utrecht, The Netherlands.
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.
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.
Authors: P F Limperg; L Haverman; H Maurice-Stam; M Coppens; C Valk; M J H A Kruip; J Eikenboom; M Peters; M A Grootenhuis Journal: Qual Life Res Date: 2017-09-12 Impact factor: 4.147