The Liminal and the Parallax

MacArtney, John I.; Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia

doi:10.1177/1049732315618938

Cited by 32 publications

(9 citation statements)

References 42 publications

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“…These include profound symptoms (Solano, Gomes, & Higginson, 2006; World Health Organization, 2004), prolonged anticancer treatments, side effects from treatment, dealing with the foreign world of the “health system,” and the implications of living with an uncertain prognosis. Being diagnosed with a life-limiting illness often involves significant changes to the ways a person experiences and understands living and dying (MacArtney, Broom, Kirby, Good, & Wootton, 2017).…”

Section: Introductionmentioning

confidence: 99%

People With Advanced Cancer: The Process of Living Well With Awareness of Dying

et al. 2018

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Literature suggests that it is possible to live well with advanced cancer but little is known about the process. In this article, we present a secondary analysis of experiences of living with advanced cancer ( n = 22) that refines the theory of “Living Well with Chronic Illness” for a different context and population. The refined theory explains the experience of living well with advanced cancer illuminating a five-phase iterative process: struggling, accepting, living with advanced cancer, sharing the illness experience, and reconstructing life. These five phases revolve around the core concept of Awareness of Dying, which varied from awareness of the possibility of dying, to accepting the possibility of dying, to acceptance that “I am dying.” Awareness of Dying led to a focus on living well with advanced cancer and movement towards living a life rather than living an illness.

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Section: Introductionmentioning

confidence: 99%

People With Advanced Cancer: The Process of Living Well With Awareness of Dying

et al. 2018

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“…This challenge was described as similar to following two, divergent paths at the same time. This analogy of a “double road” or “double awareness” has been found to be clinically useful [53–55].…”

Section: Resultsmentioning

confidence: 99%

Development of a psychoeducational intervention for people affected by pancreatic cancer

Tong

Moura

et al. 2019

Pilot Feasibility Stud

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Background Pancreatic cancer has one of the highest mortality rates of any malignancy, placing a substantial burden on patients and families with high unmet informational and supportive care needs. Nevertheless, access to psychosocial and palliative care services for the individuals affected is limited. There is a need for standardized approaches to facilitate adjustment and to improve knowledge about the disease and its anticipated impact. In this intervention-development paper guided by implementation science principles, we report the rationale, methods, and processes employed in developing an interdisciplinary group psychoeducational intervention for people affected by pancreatic cancer. The acceptability and feasibility of implementation will be evaluated as a part of a subsequent feasibility study. Methods The Schofield and Chambers framework for designing sustainable self-management interventions in cancer care informed the development of the intervention content and format. The Consolidated Framework for Implementation Research served as an overarching guide of the implementation process, including the development phase and the formative evaluation plan of implementation. Results A representative team of stakeholders collaboratively developed and tailored the intervention content and format with attention to the principles of implementation science, including available resourcing. The final intervention prototype was designed as a single group-session led by an interdisciplinary clinical team with expertise in caring for patients with pancreatic cancer and their families and in addressing nutrition guidelines, disease and symptom management, communication with family and health care providers, family impact of cancer, preparing for the future, and palliative and supportive care services. Conclusions The present paper describes the development of a group psychoeducational intervention to address the informational and supportive care needs of people affected by pancreatic cancer. Consideration of implementation science during intervention development efforts can optimize uptake and sustainability in the clinical setting. Our approach may be utilized as a framework for the design and implementation of similar initiatives to support people affected by diseases with limited prognoses. Electronic supplementary material The online version of this article (10.1186/s40814-019-0466-x) contains supplementary material, which is available to authorized users.

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“…These concepts of system and lifeworld have been used to explore issues such as hospice provision, community nursing and public involvement, where there is also perceived to be a space, or shift in lifeworld. [26][27][28] The concept of liminality can both conceptualise the 'betwixt and between' nature of the space between living and dying or where serious illness alters a certain lifeworld, 29,30 and the flexible services that can operate between system and lifeworlds. 31 Liminality expresses how they existed in the interstices between categories of insider/ outsider, inhabiting characteristics of being an outsider such as being risk-taking, flexible, and exerting affective labour, while, simultaneously, exhibiting characteristics of insider status such as being paid workers for a well-known charity, gaining access to service users through family practitioners, and having a degree of expertise in their field.…”

Section: Summary Of Main Findingsmentioning

confidence: 99%

Exploring a New Model of End-of-Life Care for Older People That Operates in the Space Between the Life World and the Healthcare System: A Qualitative Case Study

Dodd

Preston

Payne

et al. 2020

Int J Health Policy Manag

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Background: Innovative service models to facilitate end-of-life care for older people may be required to enable and bolster networks of care. The aim of this study was to understand how and why a new charitably funded service model of end-of-life care impacts upon the lives of older people. Methods: A multiple exploratory qualitative case study research strategy. Cases were 3 sites providing a new end-oflife service model for older people. The services were provided in community settings, primarily providing support in peoples own homes. Study participants included the older people receiving the end-of-life care service, their informal carers, staff providing care within the service and other stakeholders. Data collection included individual interviews with older people and informal carers at 2 time points, focus group interviews with staff and local stakeholders, nonparticipant observation of meetings, and a final cross-case deliberative panel discussion workshop. Framework analysis facilitated analysis within and across cases. Results: Twenty-three service users and 5 informal carers participated in individual interviews across the cases. Two focus groups were held with an additional 12 participants, and 19 people attended the deliberative panel workshop. Important elements contributing to the experience and impacts of the service included organisation, where services felt they were ‘outsiders,’ the focus of the services and their flexible approach; and the impacts particularly in enriching relationships and improving mental health. Conclusion: These end-of-life care service models operated in a space between the healthcare system and the person’s life world. This meant there could be ambiguity around their services, where they occupied a liminal, but important, space. These services are potentially important to older people, but should not be overly constrained or they may lose the very flexibility that enables them to have impact.

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The Liminal and the Parallax

Cited by 32 publications

References 42 publications

People With Advanced Cancer: The Process of Living Well With Awareness of Dying

People With Advanced Cancer: The Process of Living Well With Awareness of Dying

Development of a psychoeducational intervention for people affected by pancreatic cancer

Exploring a New Model of End-of-Life Care for Older People That Operates in the Space Between the Life World and the Healthcare System: A Qualitative Case Study

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