End of Life in Boys and Young Men With Duchenne Muscular Dystrophy – The Perspective of Dying Men and Their Families: A Systematic Review and Thematic Synthesis of Qualitative Evidence
The result's identifiers
Result code in IS VaVaI
<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F61989592%3A15410%2F25%3A73622445" target="_blank" >RIV/61989592:15410/25:73622445 - isvavai.cz</a>
Result on the web
<a href="https://journals.sagepub.com/doi/full/10.1177/00302228231186358" target="_blank" >https://journals.sagepub.com/doi/full/10.1177/00302228231186358</a>
DOI - Digital Object Identifier
<a href="http://dx.doi.org/10.1177/00302228231186358" target="_blank" >10.1177/00302228231186358</a>
Alternative languages
Result language
angličtina
Original language name
End of Life in Boys and Young Men With Duchenne Muscular Dystrophy – The Perspective of Dying Men and Their Families: A Systematic Review and Thematic Synthesis of Qualitative Evidence
Original language description
Understanding the perceptions and experiences related to the end of life (EoL) of boys and men with Duchenne muscular dystrophy from their own and/or family perspective is limited based on the available qualitative empirical studies. This systematic review was done with a thematic synthesis of qualitative evidence according to the PRISMA Statement Guidelines and the SPIDER search tool. The review included empirical, qualitative, and relevant full-text studies published in 2000–2023 in the EBSCO Discovery Service, ISI Web of Science, Scopus, PubMed, and ProQuest databases. From o total of eight included qualitative studies, four main key themes were identified: “Being a parent/caregiver” – psychosocial aspects, needs, and experiences; “Communication about EoL with healthcare and other professionals” – positive experiences and personal shortcomings; “Discussions about…” – the issue of EoL, dying and death; and “End of life” – end-of-life care, planning and the need for palliative care.
Czech name
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Czech description
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Classification
Type
J<sub>imp</sub> - Article in a specialist periodical, which is included in the Web of Science database
CEP classification
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OECD FORD branch
50302 - Education, special (to gifted persons, those with learning disabilities)
Result continuities
Project
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Continuities
S - Specificky vyzkum na vysokych skolach
Others
Publication year
2025
Confidentiality
S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů
Data specific for result type
Name of the periodical
OMEGA-JOURNAL OF DEATH AND DYING
ISSN
0030-2228
e-ISSN
1541-3764
Volume of the periodical
92
Issue of the periodical within the volume
2
Country of publishing house
US - UNITED STATES
Number of pages
31
Pages from-to
589-619
UT code for WoS article
001023057700001
EID of the result in the Scopus database
2-s2.0-85164502709