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Methodological and ethical challenges in designing and conducting research at the end of life: A systematic review of qualitative and textual evidence

K. Vlckova, S. Gonella, L. Bavelaar, G. Mitchell, T. Sussman

. 2024 ; 30 (5) : e13224. [pub] 20231219

Jazyk angličtina Země Austrálie

Typ dokumentu časopisecké články, systematický přehled

Perzistentní odkaz   https://www.medvik.cz/link/bmc25004093

Grantová podpora
161462 CIHR - Canada
JPND - EU Joint-Programme Neurodegenerative Disease Research
161462 CIHR - Canada
8F19005 Ministry of Education, Youth and Sport
733051084 Netherlands Organisation for Health Research and Development
JPND-HSC-2018-002 Health Research Board - Ireland
AS-IGF-17-001 Alzheimer's Society - United Kingdom

AIM: This systematic review aims to identify methodological and ethical challenges in designing and conducting research at the end of life from the perspective of researchers and provide a set of recommendations. BACKGROUND: Conducting research with patients and family carers facing end-of-life issues is ethically and methodologically complex. DESIGN: A systematic review was conducted. DATA SOURCES: Four databases (MEDLINE, EMBASE, CINAHL, PsycInfo) were searched from inception until the end of 2021 in February 2022. REVIEW METHODS: The Preferred Reporting Items for Systematic Reviews was followed, and the JBI Approach to qualitative synthesis was used for analysis. RESULTS: Seventeen of 1983 studies met inclusion criteria. Data were distilled to six main themes. These included (1) the need for flexibility at all stages of the research process; (2) careful attention to timing; (3) sensitivity in approach; (4) the importance of stakeholder collaboration; (5) the need for unique researcher skills; and (6) the need to deal with the issue of missing data. CONCLUSION: The findings illuminate several considerations that can inform training programmes, ethical review processes and research designs when embarking on research in this field.

Citace poskytuje Crossref.org

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