Design meets Death; A first systematic mapping review of design contributions to end of life field
This paper, for the first time, maps and interrogates the contributions towards the emerging field of design and death, through a systematic mapping review. Key databases and grey literature publications are searched and 183 design contributions are analysed, categorising results according to death spectrum; type of contribution; interventional complexity; design approach; and stakeholder involvement. Findings show an increasing trend of design contributions towards death between 2000-2021. The field is being progressed by a triad of Healthcare, Computer Science and Design disciplines, often siloed in their efforts. Design approaches and methods including Human-Centred design and Co-design are popular, particularly within Healthcare. Majority of design interventions are object-based and focused towards final disposition, with a lack of 3rd and 4th order designs i.e. service, interaction and systems. Strategic implications include transitioning through transdisciplinarity; interconnectivity across the death spectrum; expansion of design theories in the field; and interventions beyond the object.
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Background Current evidence suggests that COVID-19 is having a negative impact on the delivery of end of life care in care homes around the world. There is a need to collate current evidence to provide a comprehensive overview to assess extent of the problem. Aim To describe and evaluate the impact of the COVID-19 pandemic on end of life care delivery in care homes. Design Systematic review and narrative synthesis of studies reporting qualitative and quantitative data. Data sources The databases MEDLINE, psycINFO, SCOPUS and CINAHL were searched between December 2019 and March 2021. Results Nine studies were included. For care home staff, challenges included significant increases in responsibility and exposure to death, both of which have taken an emotional toll. Results indicate that staff tended not to be offered adequate emotional support or afforded the time to grieve. For those receiving end of life care, results indicate that the end of life care that they tended to receive, especially in the form of advance planning, was disrupted by the pandemic. Conclusion The effect of the pandemic has been to exacerbate existing problems in the provision of end of life care in care homes for both service providers and users, making that which was previously opaque starkly visible. Future research is needed to explore the effects of the pandemic and its management on those receiving end of life care in care homes and their significant others.
What is the effect of a life‐threatening pandemic at the societal level? An expanded Theory of Social Change, Cultural Evolution, and Human Development predicts that, during a period of increasing survival threat and decreasing prosperity, humans will shift toward the psychology and behavior typical of the small‐scale, collectivistic, and rural subsistence ecologies in which we evolved. In particular, subjective mortality salience, engagement in subsistence activities, and collectivism will all increase, while the aspiration to be wealthy will decrease. Because coronavirus has forced unprecedented proportions of human activity online, we tested hypotheses derived from the theory by analyzing big data samples for 70 days before and 70 days after the coronavirus pandemic stimulated President Trump to declare a national emergency. Google searches were used for an exploratory study; the exploratory study was followed by three independent replications on Twitter, internet forums, and blogs. Across all four internet platforms, terms related to subjective mortality salience, engagement in subsistence activities, and collectivism showed massive increases. These findings, coupled with prior research testing this theory, indicate that humans may have an evolutionarily conditioned response to the level of death and availability of material resources in society. More specifically, humans may shift their behavior and psychology toward that found in subsistence ecologies under conditions of high mortality and low prosperity or, conversely, toward behavior and psychology found in modern commercial ecologies under conditions of low mortality and high prosperity.
Inclusive paediatric mobility (IPM) design is a growing field in need of critical and foundational designerly transitions in order to better deal with a wicked problem. This article adopts an illustrative mapping review method to interrogate the past 50 years of IPM design, aiming to identify alternative designerly ways that could help transition the field towards a more desirable long-term future. IPM Design contributions between 1970 and 2020 are mapped chronologically across Theoretical, Methodological, Empirical, and Interventional categories. A Reflection-for-Transition framework of Designerly Ways is developed to identify existing and alternative designerly ways, through categorising key insights from the mapping review. The framework consists of five interrelated dimensions, including Designerly: Investigations, Processes, Contributions, Collaborations, and Contexts. Proposed alternative designerly ways include: exploring high-level narratives and social imaginaries; shifting focus towards problem-framing, child-centred design and transdisciplinarity; improved documentation and sharing to build a body of knowledge; and exploring extended design contexts.
Objectives Although many well-known poems consider illness, loss and bereavement, medicine tends to view poetry more as an extracurricular than as a mainstream pursuit. Within palliative care, however, there has been a long-standing interest in how poetry may help patients and health professionals find meaning, solace and enjoyment. The objective of this paper is to identify the different ways in which poetry has been used in palliative care and reflect on their further potential for education, practice and research. Methods A narrative review approach was used, drawing on searches of the academic literature through Medline and on professional, policy and poetry websites to identify themes for using poetry in palliative care. Results I identified four themes for using poetry in palliative care. These concerned (1) leadership, (2) developing organisational culture, (3) the training of health professionals and (4) the support of people with serious illness or nearing the end of life. The academic literature was mostly made up of practitioner perspectives, case examples or conceptual pieces on poetry therapy. Patients’ accounts were rare but suggested poetry can help some people express powerful thoughts and emotions, create something new and feel part of a community. Conclusion Poetry is one way in which many people, including patients and palliative care professionals, may seek meaning from and make sense of serious illnesses and losses towards the end of life. It may have untapped potential for developing person-centred organisations, training health professionals, supporting patients and for promoting public engagement in palliative care.
This article describes and reflects on the processes of designing two devices, Timecard and Fenestra, that both aim to propose new ideas for creating technologies that support rituals of honoring deceased loved ones. The discussion provides insight into how their respective designs were crafted to provide a range of interactions and to interweave with domestic practices, artifacts, and spaces; the article also describes the projects’ similar strategies to supporting relationships with the deceased. Reflections then are offered about the design of future technologies aimed at supporting the processes both of adapting to the loss of loved ones and of honoring their continued evolving place in the lives of the living after they are gone.
Health and wellbeing are determined by a number of complex, interrelated factors. The application of design thinking to questions around health may prove valuable and complement existing approaches. A number of public health projects utilizing human centered design (HCD), or design thinking, have recently emerged, but no synthesis of the literature around these exists. The results of a scoping review of current research on human centered design for health outcomes are presented. The review aimed to understand why and how HCD can be valuable in the contexts of health related research. Results identified pertinent literature as well as gaps in information on the use of HCD for public health research, design, implementation and evaluation. A variety of contexts were identified in which design has been used for health. Global health and design thinking have different underlying conceptual models and terminology, creating some inherent tensions, which could be overcome through clear communication and documentation in collaborative projects. The review concludes with lessons learned from the review on how future projects can better integrate design thinking with global health research.
Context: Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. Objectives: To (1) summarize palliative care assessment tools completed by or with patients or caregivers, and (2) identify needs for future tool development and evaluation. Methods: We completed: (1) a systematic review of systematic reviews; (2) a supplemental search of previous reviews and websites, and/or (3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest-quality systematic review for each domain. Results: We included ten systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included: no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end of life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. Conclusion: Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end of life care. While some data exists on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on: developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.
Post-mortem profiles on social network sites serve as both an archive of the deceased person's life and a gathering place for friends and loved ones. Many existing systems utilize inheritance as a model for post-mortem data management. However, the social and networked nature of personal data on social media, as well as the memorializing practices in which friends engage, indicate that other approaches are necessary. In this paper, we articulate the design choices made throughout the development of Legacy Contact, a post-mortem data management solution designed and deployed at Facebook. Building on the duties and responsibilities identified by Brubaker et al., we describe how Legacy Contact was designed to honor last requests, provide information surrounding death, preserve the memory of the deceased, and facilitate memorializing practices. We provide details around the design of the Legacy Contact selection process, the functionality provided to legacy contacts after accounts have been memorialized, and changes made to post-mortem profiles.