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      The Time Moving exhibit: Exploring perceptions of time in end‐of‐life experiences

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          Abstract

          Background

          Conversations about end of life rarely take place beyond healthcare spaces and in advance of imminent death. As the Canadian ageing population increases and new policies and options emerge for end‐of‐life choices, there will be an increasing need for supports for decision‐making on end of life. Time Moving was a participatory art exhibit created to engage participants in reflections on end‐of‐life experiences and the ways in which their perception of time fluctuated within these moments.

          Design

          A participatory and constructivist approach informed decisions on exhibit design and analysis. The Time Moving exhibit was installed in a downtown university hall for 10 days during the 2019 annual DesignTO festival, open to all members of the public. The exhibit was used as the primary method of data collection. There were three prompts informed by concepts from prior work on time perception. Participants were invited to respond by drawing, writing or constructing.

          Outcome

          There were over 120 contributions of participants over the duration of the Time Moving exhibit. These contributions revealed new insights related to temporal perception and end‐of‐life experiences. Participants shared their perception of time during end‐of‐life experiences in a variety of ways, revealing a diversity of perceptions of time beyond calendar and clock time, including time experienced as a spiral.

          Conclusions

          The insights on time perception highlight opportunities for approaching dialogue on end of life and in grief support, and for exhibit as a mechanism for research and education.

          Patient or Public Contribution

          As a public exhibit, over 120 people contributed ideas, personal stories, drawings and other creative outputs to the exhibit. An estimated 250 people visited the exhibit.

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          Most cited references40

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          The effects of advance care planning on end-of-life care: a systematic review.

          Advance care planning is the process of discussing and recording patient preferences concerning goals of care for patients who may lose capacity or communication ability in the future. Advance care planning could potentially improve end-of-life care, but the methods/tools used are varied and of uncertain benefit. Outcome measures used in existing studies are highly variable. To present an overview of studies on the effects of advance care planning and gain insight in the effectiveness of different types of advance care planning. Systematic review. We systematically searched PubMed, EMBASE and PsycINFO databases for experimental and observational studies on the effects of advance care planning published in 2000-2012. The search yielded 3571 papers, of which 113 were relevant for this review. For each study, the level of evidence was graded. Most studies were observational (95%), originated from the United States (81%) and were performed in hospitals (49%) or nursing homes (32%). Do-not-resuscitate orders (39%) and written advance directives (34%) were most often studied. Advance care planning was often found to decrease life-sustaining treatment, increase use of hospice and palliative care and prevent hospitalisation. Complex advance care planning interventions seem to increase compliance with patients' end-of-life wishes. The effects of different types of advance care planning have been studied in various settings and populations using different outcome measures. There is evidence that advance care planning positively impacts the quality of end-of-life care. Complex advance care planning interventions may be more effective in meeting patients' preferences than written documents alone. More studies are needed with an experimental design, in different settings, including the community. © The Author(s) 2014.
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            The dual process model of coping with bereavement: rationale and description.

            There are shortcomings in traditional theorizing about effective ways of coping with bereavement, most notably, with respect to the so-called "grief work hypothesis." Criticisms include imprecise definition, failure to represent dynamic processing that is characteristic of grieving, lack of empirical evidence and validation across cultures and historical periods, and a limited focus on intrapersonal processes and on health outcomes. Therefore, a revised model of coping with bereavement, the dual process model, is proposed. This model identifies two types of stressors, loss- and restoration-oriented, and a dynamic, regulatory coping process of oscillation, whereby the grieving individual at times confronts, at other times avoids, the different tasks of grieving. This model proposes that adaptive coping is composed of confrontation--avoidance of loss and restoration stressors. It also argues the need for dosage of grieving, that is, the need to take respite from dealing with either of these stressors, as an integral part of adaptive coping. Empirical research to support this conceptualization is discussed, and the model's relevance to the examination of complicated grief, analysis of subgroup phenomena, as well as interpersonal coping processes, is described.
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              Development of a framework for person-centred nursing.

              This paper presents the development and content of a person-centred nursing framework. Person-centred is a widely used concept in nursing and health care generally, and a range of literature articulates key components of person-centred nursing. This evidence base highlights the links between this approach and previous work on therapeutic caring. The framework was developed through an iterative process and involved a series of systematic steps to combine two existing conceptual frameworks derived from empirical studies. The process included the mapping of original conceptual frameworks against the person-centred nursing and caring literature, critical dialogue to develop a combined framework, and focus groups with practitioners and co-researchers in a larger person-centred nursing development and research project to test its face validity. The person-centred nursing framework comprises four constructs -prerequisites, which focus on the attributes of the nurse; the care environment, which focuses on the context in which care is delivered; person-centred processes, which focus on delivering care through a range of activities; and expected outcomes, which are the results of effective person-centred nursing. The relationship between the constructs suggests that, to deliver person-centred outcomes, account must be taken of the prerequisites and the care environment that are necessary for providing effective care through the care processes. The framework described here has been tested in a development and research project in an acute hospital setting. Whilst there is an increasing empirical base for person-centred nursing, as yet little research has been undertaken to determine its outcomes for patients and nurses. The framework developed can be described as a mid-range theory. Further testing of the framework through empirical research is required to establish its utility for nursing practice and research.
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                Author and article information

                Contributors
                Role: Associate Professorksellen@faculty.ocadu.ca
                Role: Research Assistant
                Role: Research Associate
                Role: Research Assistant
                Role: Research Assistant
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                15 January 2022
                April 2022
                : 25
                : 2 , COVID‐19 and Co‐Production Special Section ( doiID: 10.1111/hex.v25.2 )
                : 558-566
                Affiliations
                [ 1 ] Health Design Studio OCAD University Toronto Ontario Canada
                Author notes
                [*] [* ] Correspondence Kate Sellen, PhD, Health Design Studio, OCAD University,205 Richmond St. W, Toronto, ON M5V 1V3, Canada.

                Email: ksellen@ 123456faculty.ocadu.ca

                Article
                HEX13379
                10.1111/hex.13379
                8957742
                35032410
                79c7d5b4-0f14-452a-b75a-7b68b77f9aec
                © 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 15 September 2021
                : 30 December 2020
                : 23 September 2021
                Page count
                Figures: 9, Tables: 0, Pages: 9, Words: 5898
                Funding
                Funded by: Social Sciences and Humanities Research Council of Canada , doi 10.13039/501100000155;
                Award ID: #100927
                Categories
                Original Article
                Regular Issue Papers
                Original Articles
                Custom metadata
                2.0
                April 2022
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.1.2 mode:remove_FC converted:27.03.2022

                Health & Social care
                art,decision‐making,design research,end‐of‐life,human‐centred design
                Health & Social care
                art, decision‐making, design research, end‐of‐life, human‐centred design

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