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.
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| Název: | 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. |
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| Autoři: | Chrastina J; Institute of Special Education Studies, Faculty of Education, Palacký University Olomouc, Olomouc, Czech Republic., Haroková M; Institute of Special Education Studies, Faculty of Education, Palacký University Olomouc, Olomouc, Czech Republic. |
| Zdroj: | Omega [Omega (Westport)] 2025 Dec; Vol. 92 (2), pp. 589-619. Date of Electronic Publication: 2023 Jul 05. |
| Způsob vydávání: | Journal Article; Systematic Review |
| Jazyk: | English |
| Informace o časopise: | Publisher: Sage Publications Country of Publication: United States NLM ID: 1272106 Publication Model: Print-Electronic Cited Medium: Internet ISSN: 1541-3764 (Electronic) Linking ISSN: 00302228 NLM ISO Abbreviation: Omega (Westport) Subsets: MEDLINE |
| Imprint Name(s): | Publication: 2015- : Los Angeles Sage Publications Original Publication: Westport, Conn., Greenwood Periodicals. |
| Výrazy ze slovníku MeSH: | Muscular Dystrophy, Duchenne*/psychology , Terminal Care*/psychology , Attitude to Death*, Humans ; Male ; Qualitative Research ; Adolescent ; Child ; Palliative Care/psychology |
| Abstrakt: | Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. 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. |
| Contributed Indexing: | Keywords: Duchenne muscular dystrophy; caregivers; dying; end of life; palliative care; psychosocial needs; qualitative review |
| Entry Date(s): | Date Created: 20230706 Date Completed: 20251021 Latest Revision: 20251021 |
| Update Code: | 20251022 |
| PubMed Central ID: | PMC12508506 |
| DOI: | 10.1177/00302228231186358 |
| PMID: | 37408104 |
| Databáze: | MEDLINE |
Nájsť tento článok vo Web of Science | Abstrakt: | Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.<br />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. |
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| ISSN: | 1541-3764 |
| DOI: | 10.1177/00302228231186358 |