Adherence und Krankheitsverarbeitung junger Mukoviszidose-Patienten - eine qualitative Studie

Abstract

OBJECTIVES: Especially in adolescence, lack of adherence is an essential reason for deterioration of the physical state of patients with CF. The study aims to better understanding of relevant attitudes and experiences of young adult CF-patients with respect to coping behaviour and caregiver-patient relationship and to explore the relation between these factors and treatment adherence. METHODS: 12 semi-structured interviews were performed with patients (age 17 - 24 years). The interviews were audio-taped, transcripted and evaluated. Data analysis was computer-aided by the ATLAS.ti software. FINDINGS: The study reveals a lot of clinically relevant information. Treatment is often attended by emotional burdens and coping strategies impact the treatment adherence. Lack of adherence to medical treatment is not only a dysfunctional behaviour but can be very reasonable to sustain emotional well being, e.g. avoiding the treatment (taking medicine, visiting the doctor, diagnostics, ...) serves as a function to avoid the burdening realisation of being ill. The relationship to the caregivers could be a wearing factor but also a very supporting and moderating factor to handle burdening feelings. Patients over all desire respect, solicitousness and encouragement. CONCLUSIONS: The results strengthen the importance of the psychological and social role of the caregivers and reveals significant clues how to support patients better and to improve treatment adherence. Caregivers should not concentrate only on the medical aspects of illness. Emotional well-being should be an explicit goal of medical treatment. Maintenance of positive self-perception and acceptance of illness are important conditions to good adherence.