Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jul 11, 2022
Open Peer Review Period: Jul 5, 2022 - Aug 30, 2022
Date Accepted: Nov 5, 2022
(closed for review but you can still tweet)
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
What does legacy mean to people making treatment choices for serious illness? A scoping review protocol
ABSTRACT
Background:
Legacy – what one leaves behind and how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illness. To date, very little is known about the conceptual foundations of legacy. No conceptual frameworks exist that provide comprehensive understanding of how legacy considerations relate to patient choices about their medical care.
Objective:
The objective of this scoping review is to understand the extent and type of research addressing the concept of legacy by people facing serious illness to inform a conceptual framework of legacy and patient treatment choices.
Methods:
This protocol follows the guidelines put forth by Levac et al, which expands the framework introduced by Arksey and O’Malley, as well as the Joanna Briggs Institute Reviewer’s manual. This scoping review explores several electronic databases including PubMed, Medline, CINAHL, Cochrane Library, PsycINFO and others and includes legacy-specific grey literature. An initial search will be conducted in English-language literature from 2000-present with selected keywords to identify relevant articles and refine the search strategy. After the search strategy has been finalized, two independent reviewers will undertake a 2-part study selection process. In the first step, reviewers will screen article titles and abstracts to identify the eligibility of each article based on pre-determined exclusion/inclusion criteria. A third senior reviewer will arbitrate discrepancies regarding inclusions/exclusions. During the second step, the full texts will be screened and only relevant articles will be kept. Relevant study data will be extracted, collated, and charted to summarize the key findings related to the construct of legacy.
Results:
This study will identify how people facing serious illness define legacy, and how their thinking about legacy impacts the choices they make about their medical treatments. The findings of this study will inform a conceptual model that outlines how ideas about legacy impact treatment choices. The results of this study will be submitted to an indexed journal.
Conclusions:
Very little is known about the role of legacy in treatment decisions of patients across the continuum of serious illness. In particular, no comprehensive conceptual model exists that would provide understanding of how legacy is considered by people making decisions about their care during serious illness. This study will be the first to construct a conceptual model detailing how considerations of legacy impact medical decision making for people facing or living with serious illness.
Citation
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Copyright
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