Everyday life of adolescents with sickle cell disease – A qualitative, explorative and participative photovoice study

Schönbächler Marcar, Claudia; Keller, Marianne; Hillewerth, Kathrin; van Holten, Karin (2020). Everyday life of adolescents with sickle cell disease – A qualitative, explorative and participative photovoice study Pflege, 33(6), pp. 347-356. Hogrefe 10.1024/1012-5302/a000767

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Background: Sickle cell disease (SCD) is a chronic, inherited haematological condition that occurs rarely in Switzer- land. 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: Quali- tative data was collected using the participative method Photovoice. This involved an integrated group discussion of photo- graphs taken by the participants, and was followed by reconstructive analysis. Results: Issues voiced covered living environ- ment (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. Keywords: Chronic disease, blood disease, adolescents, participation, environment

Item Type:	Journal Article (Original Article)
Division/Institute:	School of Health Professions > Institute for Participatory Health Care
Name:	Schönbächler Marcar, Claudia; Keller, Marianne; Hillewerth, Kathrin and van Holten, Karin0000-0003-1253-8513
Subjects:	R Medicine > RT Nursing
ISSN:	1012-5302
Publisher:	Hogrefe
Language:	German
Submitter:	Karin van Holten
Date Deposited:	11 Mar 2022 09:25
Last Modified:	07 Jun 2022 21:46
Publisher DOI:	10.1024/1012-5302/a000767
Uncontrolled Keywords:	Chronische Erkrankung, Sichelzellerkrankung, Jugendliche, Partizipation, Lebenswelt
ARBOR DOI:	10.24451/arbor.16185
URI:	https://arbor.bfh.ch/id/eprint/16185