Adherence to treatment in adolescents with haemophilia: a qualitative study

Elsbeth Müller-Kägi; Manuela Albisetti; Andrea L Koppitz

doi:10.17225/jhp.00019

Abstract

Abstract 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 self-competence” 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.

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Authors

Elsbeth Müller-Kägi

elsbeth.mueller@kispi.uzh.ch

Division of Haematology, University Children’s Hospital, Steinwiesstrasse 75, CH-8032 Zürich, Switzerland
Manuela Albisetti

Division of Haematology, University Children’s Hospital, Steinwiesstrasse 75, CH-8032 Zürich, Switzerland
Andrea L Koppitz

Zurich University of Applied Science ZHAW, Technikumstrasse 71, CH-8401 Winterthur, Switzerland