Adherence to treatment in adolescents with haemophilia: a qualitative study

introduction: Adolescents experience important changes in their physical, emotional, social and behavioural development. It is known that adolescents wish to be accepted by their peers, strive for independence and are prone to experiment. The challenge for adolescents with haemophilia is the need for taking responsibility for managing their illness and learning to comply with recommended treatment. This study aimed to investigate the process of adherence to treatment in adolescents with haemophilia. Methods: Grounded theory was used, based on one-on-one interviews (n=13) with adolescents with haemophilia. Results: The results include the core category “maturing selfcompetence” which represents the continuous developmental process from birth to teens with regard to haemophilia care. Three constitutive categories “living in a haemophiliac’s body”, “sharing with others” and “being protected and walking in faith” represent basic experiences in an adolescent's life. Further emergent categories include “becoming and staying informed”, “becoming and staying an expert”, “being in action”, “living between oblivion and awareness”, and “finding peace”. The adolescent stage “maturing self-competence” and their assessment of the situation at hand form the basis for decisions concerning adherence. Conclusion: Considering adolescents to be competent managers with regard to their disease, and including them in a partnership decision-making process for the therapeutic regime are the most important requisites for effective adherence.