Bereavement round up: Digital legacies

Ferris, Laura Rooney

doi:10.1080/02682621.2016.1160617

Cited by 3 publications

(1 citation statement)

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“…Planning one’s legacy can be an adaptive process or rite of passage [ 12 ] for people living with serious illness [ 13 - 15 ] and may include decisions about medical care. We define secondary legacy as the manner in which others remember a loved one or family member, including bereavement [ 16 ] and memorialization [ 17 - 19 ] activities initiated after a person’s death. We term the recognition of the legacy of international or national [ 20 ], political [ 21 ], or professional impact [ 22 ] of a public person not necessarily personally known to those memorializing them to be tertiary legacy.…”

Section: Introductionmentioning

confidence: 99%

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

Gray¹,

Banegas²,

Henrikson³

2022

JMIR Res Protoc

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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 illnesses. A preliminary literature review suggests that patients facing serious illness consider legacy when making medical decisions, for example, forgoing expensive treatment with limited or unknown clinical benefit to preserve one’s inheritance for their children. To date, very little is known about the conceptual foundations of legacy. No conceptual frameworks exist that provide a 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 will explore several electronic databases including PubMed, Medline, CINAHL, Cochrane Library, PsycINFO, and others and will include legacy-specific gray literature, including dissertation research available via ProQuest. An initial search will be conducted in English-language literature from 1990 to the present with selected keywords to identify relevant articles and refine the search strategy. After the search strategy has been finalized, 2 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 predetermined exclusion or inclusion criteria. A third senior reviewer will arbitrate discrepancies regarding inclusions or exclusions. During the second step, the full texts will be screened by 2 reviewers, 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. We will note gaps in the literature base. The findings of this study will inform a conceptual model that outlines how ideas about legacy impact the patient’s 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 the treatment decisions of patients across the continuum of serious illness. In particular, no comprehensive conceptual model exists that would provide an understanding of how legacy is considered by people making decisions about their care during serious illness. This study will be among the first to construct a conceptual model detailing how considerations of legacy impact medical decision-making for people facing or living with serious illnesses. International Registered Report Identifier (IRRID) DERR1-10.2196/40791

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Section: Introductionmentioning

confidence: 99%

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

Gray¹,

Banegas²,

Henrikson³

2022

JMIR Res Protoc

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Personal legacy and treatment choices for serious illness: a scoping review

Figueroa Gray,

Randall,

Banegas

et al. 2024

BMJ Support Palliat Care

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BackgroundLegacy—how one hopes to be remembered after death—is an unexplored and important dimension of decision-making for people facing serious illness.ObjectivesWe conducted a scoping review to answer the following research questions: (1) How do people making treatment choices conceive of legacy? and (2) What treatment choices do people make with legacy in mind?Eligibility criteriaParticipants included people facing serious illness who discussed how they wanted to be remembered after their own death, or how they hoped to impact others, as they made treatment choices. Studies in English published between 1990 and 2022 were included.Sources of evidenceWe conducted searches in electronic databases including Medline/PubMed, CINAHL, PsycInfo, SocialWork, AnthropologyPlus, Web of Science, ProQuest and EMBASE databases.Data synthesisWe used an electronic screening tool to screen abstracts and review full-text articles suitable for inclusion. We analysed included articles using Atlas.ti. We constructed tables and narratively synthesised the findings.ResultsWe identified three major intersecting legacy goals that influence choices people facing serious illness make about their treatment and health behaviours, and the types of choices people make with legacy in mind. The three legacy goals are: remembrance of the individual self, remembrance of the social self and impact on others’ well-being.ConclusionsWe identify the importance of legacy to patient treatment choices. Understanding for whom this construct is important, what types of legacy goals people hold and how those goals impact treatment choices is necessary to provide patient-centred whole-person care to people facing serious illness.

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What does legacy mean to people making treatment choices for serious illness? A scoping review protocol (Preprint)

Gray¹,

Banegas²,

Henrikson³

2022

Preprint

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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.

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Bereavement round up: Digital legacies

Cited by 3 publications

References 0 publications

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

Conceptions of Legacy Among People Making Treatment Choices for Serious Illness: Protocol for a Scoping Review

Personal legacy and treatment choices for serious illness: a scoping review

What does legacy mean to people making treatment choices for serious illness? A scoping review protocol (Preprint)

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