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Care for data bodies at the end of life: An integrative review of humans working at the intersections of death and digital remains

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Care for data bodies at the end of life: An integrative review of humans working at the intersections of death and digital remains

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1. Data bodies have always existed - we all have them - and they have become increasingly digitized in the age of the internet, social media, and smartphones

2. Once created, these data bodies can take on a ‘life of their own’ - animating algorithms and search engines and other forms of automation. They may also travel well beyond our reach, to others we’ve never met, in times well beyond our own existence.

3. Data bodies also affect us in the present- shaping the care we receive, the opportunities and resources we have access to, our social standing and reputations, etc. This has cumulative effects that can also impact our wider households/families/communities.

4. A cottage industry of ‘digital legacy management’ has sprung up to assist people with curating, archiving and safeguarding their data bodies. Much of this tech and innovation exists outside of the care work literature, in the realm of start-ups and venture capital

5. Nonetheless, care workers like nurses have a social contract that requires us to attend to the humans we accompany in care, and increasingly this means attending to these persons’ data bodies - beyond just what is represented in the EHR. And this is even more urgent given the acceleration of algorithmically-automated technologies not just in health care but in public life, generally.

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Concepts Common in this literature include:

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Concepts Common in this literature include:

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Digital legacy-making (mostly related to supporting parents and caregivers through perinatal death, pediatric EOL & advanced cancer EOL care)

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Tropes as old as Time-Exploring the Angel and Hero Narrative in The Media and How it Impacts Nurses in the Covidicene

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Transformative impact of simulation based learning on nursing students competence and clinical judgement

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Transformative impact of simulation based learning on nursing students competence and clinical judgement

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Explores the impact of the angel and hero narrative of nurses prominent in the media during the COVID-19 pandemic and explain how this impacts us as professionals, disseminate these impacts to media outlets and provide a roadmap for what to do instead.

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Language & frameworks nurses can use to incorporate data bodies, digital legacy-making & consideration of digital remains into EOL care praxis

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Language & frameworks nurses can use to incorporate data bodies, digital legacy-making & consideration of digital remains into EOL care praxis

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Nursing Perspectives on Alarm Fatigue: An Integrative Review

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Nurses reject these narratives as it undermines our skills and education and want to be seen as autonomous professionals.

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Data bodies affect health & access to care during life, and also - after death. Given recent expansions of automation & A.I./machine learning, nurses will need to attend to patients' data bodies; including our roles as patient & family data generators, curators, and (possibly) destroyers. 

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Data bodies affect health & access to care during life, and also - after death. Given recent expansions of automation & A.I./machine learning, nurses will need to attend to patients' data bodies; including our roles as patient & family data generators, curators, and (possibly) destroyers. 

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A lot of papers explore how these narratives impact the profession but only few qualitative studies look at how these impact nurses personally-both in patient interaction and in the world as humans-I wanted to collect the data from these types of studies and present it with analysis.

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Knowledge, attitude, and behaviors that impact nurses’ infection control in ICUs.   

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Knowledge, attitude, and behaviors that impact nurses’ infection control in ICUs.   

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Understanding nurses' perspectives on alarm fatigue is crucial for informing evidence-based interventions and policies

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its vital to assess the source nursing students clinical skill acquisition, as well as source of competence. all this help to bridge theory practice gap

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its vital to assess the source nursing students clinical skill acquisition, as well as source of competence. all this help to bridge theory practice gap

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I want to change the way nurses are perceived. We need to be allowed to tell our own stories instead of having narratives spun about us.

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SBL does not only initial knowledge retention but also enhance knowledge retention over time.

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SBL does not only initial knowledge retention but also enhance knowledge retention over time.

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To assess the knowledge, attitude, and behaviors of nurses in ICUs in prevention/ control of infection. 

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To assess the knowledge, attitude, and behaviors of nurses in ICUs in prevention/ control of infection. 

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development of skills and proficiency. SBL assists them to gain mastery of clinical skills which can be difficult to achieve in only traditional clinical setting

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development of skills and proficiency. SBL assists them to gain mastery of clinical skills which can be difficult to achieve in only traditional clinical setting

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The need for a holistic and collaborative approach involving nurses, healthcare organizations, and researchers to address alarm fatigue comprehensively

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Innovative approaches to teaching and learning to bridge theory practice gap

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Innovative approaches to teaching and learning to bridge theory practice gap

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The articles used for this review studied alarm fatigue in depth and found a wide range of contributing factors. The aforementioned factors encompass a spectrum of organizational challenges, including inadequate alarm settings, inadequate medical devices, and high noise levels, as well as human factors, including healthcare providers' limited knowledge, experience, and accountability regarding the effective management of alarms

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There are differences between nurses’ behavior and knowledge about the prevention of infection based on their level of education and experience in the ICUs. 

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There are differences between nurses’ behavior and knowledge about the prevention of infection based on their level of education and experience in the ICUs. 

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ADDRESSING THE FACTORS THAT IMPACT SUCCESSFUL IMPLEMENTATION OF HELPING BABIES BREATHE: AN INTEGRATING REVIEW OF LITERATURE

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This life saving program is successful in its initial implementation as a low-fidelity simulation modality, but long term there are challenges to maintaining these skills in clinical practice. There is space for qualitative research to fill this gap but it is limited in current literature. This may be due to the fact that this research is outside of HBB and needs to meet ethics committee approval.

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The data supports repeating trainings and sustaining trainings to support clinical implementation. The most significant impact to sustaining these global programs is human resources and cost. If qualitative data was a part of the HBB program, researchers may be able to capture this data without delays from ethics committee approval.

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My current project has been impacted by this very challenge. My aim is to consider sharing my focus group questions and discussions as a template for the HBB program to consider using and adopting to enhance qualitative analysis factors that help us better understand what impacts sustainability of this program or why there are limitations to applying to clinical practice.

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Expanding HBB research beyond quantitative data during a training to consider longitudinal studies to capture quantitative and qualitative factors that may impact the programs success in a specific global setting.