Der Alltag von Jugendlichen mit einer Sichelzellerkrankung - Eine qualitative, explorative und partizipative...

Everyday life of adolescents with sickle cell disease - A qualitative, explorative and participative photovoice study Abstract. Background: Sickle cell disease (SCD) is a chronic, inherited haematological condition that occurs rarely in Switzerland. The disease is characterized by recurring attacks of pain and serious infections that require frequent hospitalisation. Due to its rarity, little is known about the disease's impact on the daily lives of afflicted adolescents. Aim: The study investigated how the disease impacts on the lives of adolescents with SCD and identified the most pertinent challenges they face in their daily activities. Knowledge gained serves to improve support offered by the Paediatric Haematological Centre. Method: Qualitative data was collected using the participative method Photovoice. This involved an integrated group discussion of photographs taken by the participants, and was followed by reconstructive analysis. Results: Issues voiced covered living environment (e. g. family), coping strategy (e. g. peers) and health literacy (e. g. understanding their condition). These issues were perceived as challenges as well as a resource. Self-management and Shaping of health management emerged as key issues for a support and care concept in nursing and health counselling of SCD. Conclusions: Adolescents with SCD exhibited health literacy in various areas of their lives that can be fostered by the health care system. A most promising approach is genuine participation and inclusion of peers in both councelling and research.