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Informal caregivers' experiences of transitioning during end‐of‐life care—A scoping review

Abstract

Background

Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide-ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end-of-life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature.

Methods

Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA-ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home?

Conclusions

Current knowledge on this topic is limited; however, from this review, two main themes were identified: ‘Challenges arising during transitioning’ with subthemes of burden of care and fading away. The second theme ‘Coping strategies’ comprised subthemes of meaning-making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon.

Patient or Public Contribution

N/A as this is a Scoping Review.

What this paper contributes to the wider global community

An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end-of-life care in the home. While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role.

Unmet care needs of women who have undergone breast cancer surgery: A scoping review

Abstract

Aim

To summarize the evidence regarding the unmet care needs of women who have undergone breast cancer surgery and identify research gaps.

Design

A scoping review.

Data Sources

This review entailed a systematic search in EMBASE, Medline via PubMed, CINAHL Complete, APA PsycINFO, Cochrane Library, Web of Science and Scopus (up until 30 July 2023).

Review Methods

This review was guided by Arksey and O'Malley's Framework (2005) and the Preferred Reporting Items for Systematic Reviews and Meta-analysis-Scoping Review extension (PRISMA-ScR).

Results

Twenty-five studies that included 4914 participants were retrieved. Fourteen studies employed quantitative designs, eight used qualitative methods, two were mixed-methods studies and one used a qualitative meta-synthesis. Women who have undergone breast cancer surgery experience a wide range of complex and multifaceted unmet care needs. The informational/educational and psychological/emotional domains were the most frequently reported among the identified domains. Meanwhile, the sexual and spiritual/religious beliefs domains remained relatively underexplored. Furthermore, none of the assessment tools used in these studies captured the entirety of the possible domains of unmet care needs.

Conclusion

Needs assessment should be integrated into the routine care of women who have undergone breast cancer surgery. Interventions should be developed to address the unmet informational/educational and psychological/emotional needs of women. Future studies should employ high-quality mixed-methods approaches to explore women's sexual and spiritual/religious concerns.

Impact

This review provides a comprehensive overview of the unmet care needs of women who have undergone the breast cancer surgery. These findings will contribute to the development of tailored interventions. This review also informs future studies to explore distinct domains of unmet care needs.

Patient or Public Contribution

No patient or public contribution.

Infographic summaries for clinical practice guidelines: results from user testing of the BMJ Rapid Recommendations in primary care

Por: Van Bostraeten · P. · Aertgeerts · B. · Bekkering · G. E. · Delvaux · N. · Dijckmans · C. · Ostyn · E. · Soontjens · W. · Matthysen · W. · Haers · A. · Vanheeswyck · M. · Vandekendelaere · A. · Van der Auwera · N. · Schenk · N. · Stahl-Timmins · W. · Agoritsas · T. · Vermandere · M.
Objectives

Infographics have the potential to enhance knowledge translation and implementation of clinical practice guidelines at the point of care. They can provide a synoptic view of recommendations, their rationale and supporting evidence. They should be understandable and easy to use. Little evaluation of these infographics regarding user experience has taken place. We explored general practitioners’ experiences with five selected BMJ Rapid Recommendation infographics suited for primary care.

Methods

An iterative, qualitative user testing design was applied on two consecutive groups of 10 general practitioners for five selected infographics. The physicians used the infographics before clinical encounters and we performed hybrid think-aloud interviews afterwards. 20 interviews were analysed using the Qualitative Analysis Guide of Leuven.

Results

Many clinicians reported that the infographics were simple and rewarding to use, time-efficient and easy to understand. They were perceived as innovative and their knowledge basis as trustworthy and supportive for decision-making. The interactive, expandable format was preferred over a static version as general practitioners focused mainly on the core message. Rapid access through the electronic health record was highly desirable. The main issues were about the use of complex scales and terminology. Understanding terminology related to evidence appraisal as well as the interpretation of statistics and unfamiliar scales remained difficult, despite the infographics.

Conclusions

General practitioners perceive infographics as useful tools for guideline translation and implementation in primary care. They offer information in an enjoyable and user friendly format and are used mainly for rapid, tailored and just in time information retrieval. We recommend future infographic producers to provide information as concise as possible, carefully define the core message and explore ways to enhance the understandability of statistics and difficult concepts related to evidence appraisal.

Trial registration number

MP011977.

Violence against nurses by patients and visitors in the emergency department: An integrative review

Abstract

Aim

This integrative review explored violence against emergency nurses by patients/visitors, examining its nature, contributing factors and consequences.

Design

Integrative review.

Data Sources

Articles were obtained from PubMed, CINAHL, EMBASE, Web of Science and PsycInfo databases, up until December 2021.

Review Methods

26 articles were reviewed, evaluating study quality with the Crowe Critical Appraisal Tool and synthesizing conclusions through theme development and coding.

Results

This review delves into the issue of violence perpetrated against emergency nurses by patients and visitors. It elucidates three overarching themes: the nature of violence, the contributing factors and the consequences of such acts.

Conclusion

The findings inform healthcare policy for the development of prevention approaches while identifying research gaps and emphasizing the need for alternative study designs and methodologies.

Impact

This review has implications for nursing practice, policymaking and research, emphasizing the need for stakeholder engagement and tailored interventions for at-risk emergency nurses.

No Patient or Public Contribution

This project was an integrative review of the literature therefore no patient or public contribution was necessary.

What Already is Known

Violence by patients and visitors in healthcare settings, especially in emergency departments, has garnered considerable attention.

What this Paper Adds

This review specifically examines violence-targeting emergency department nurses from patients and visitors, assessing its characteristics, contributing factors and consequences.

Implications for Practice/Policy

The findings will guide stakeholder engagement in developing interventions to support vulnerable emergency nurses.

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