Der Alltag von Jugendlichen mit einer Sichelzellerkrankung
dc.contributor.author
Schönbächler Marcar, Claudia
dc.contributor.author
Keller, Marianne
dc.contributor.author
Hillewerth, Kathrin
dc.contributor.author
van Holten, Karin
dc.date.accessioned
2021-01-12T07:53:53Z
dc.date.available
2020-12-20T03:42:07Z
dc.date.available
2021-01-12T07:53:53Z
dc.date.issued
2020
dc.identifier.issn
1012-5302
dc.identifier.other
10.1024/1012-5302/a000767
en_US
dc.identifier.uri
http://hdl.handle.net/20.500.11850/457349
dc.description.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. © 2020 Hogrefe
en_US
dc.language.iso
de
en_US
dc.publisher
Hogrefe
en_US
dc.subject
Chronic disease
en_US
dc.subject
blood disease
en_US
dc.subject
adolescents
en_US
dc.subject
participation
en_US
dc.subject
environment
en_US
dc.title
Der Alltag von Jugendlichen mit einer Sichelzellerkrankung
en_US
dc.type
Journal Article
dc.date.published
2020-10-21
ethz.journal.title
Pflege
ethz.journal.volume
33
en_US
ethz.journal.issue
6
en_US
ethz.journal.abbreviated
Pflege
ethz.pages.start
347
en_US
ethz.pages.end
356
en_US
ethz.size
10 p.
en_US
ethz.identifier.scopus
ethz.publication.place
Bern
en_US
ethz.publication.status
published
en_US
ethz.date.deposited
2020-12-20T03:42:14Z
ethz.source
SCOPUS
ethz.eth
yes
en_US
ethz.availability
Metadata only
en_US
ethz.rosetta.installDate
2021-01-12T07:54:01Z
ethz.rosetta.lastUpdated
2021-01-12T07:54:01Z
ethz.rosetta.versionExported
true
ethz.COinS
ctx_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.atitle=Der%20Alltag%20von%20Jugendlichen%20mit%20einer%20Sichelzellerkrankung&rft.jtitle=Pflege&rft.date=2020&rft.volume=33&rft.issue=6&rft.spage=347&rft.epage=356&rft.issn=1012-5302&rft.au=Sch%C3%B6nb%C3%A4chler%20Marcar,%20Claudia&Keller,%20Marianne&Hillewerth,%20Kathrin&van%20Holten,%20Karin&rft.genre=article&rft_id=info:doi/10.1024/1012-5302/a000767&
Files in this item
Files | Size | Format | Open in viewer |
---|---|---|---|
There are no files associated with this item. |
Publication type
-
Journal Article [131648]