Room for Death – International museum-visitors’ preferences regarding the end of their life

Lindqvist, Olav; Tishelman, Carol

doi:10.1016/j.socscimed.2015.06.016

Cited by 24 publications

(12 citation statements)

References 40 publications

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“…CT and OL then independently coded 25 responses to each of the open-ended questions in accordance with CW’s coding schemes. The high level of agreement, with only a few differences, led us to continue coding other questions using a process of ‘negotiated consensus’, as previously applied in this research team [12]. After CW completed coding all data individually, these three authors jointly went through the full database, combining similar codes into the larger categories described below.…”

Section: Methodsmentioning

confidence: 99%

Public awareness of palliative care in Sweden

Westerlund¹,

Tishelman

Benkel

et al. 2018

Scand J Public Health

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Objective: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. Design: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. Subjects: The study utilized a population sample of 7684 persons aged 18–66, of which 2020 responded, stratified by gender, age and region. Results: Most participants reported ‘no’ (n = 827, 41%) or ‘some’ (n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as ‘care before death’, ‘pain relief’, ‘dignity’ and a ‘peaceful death’. The preferred place of care and death was one’s own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term ‘palliative care’ was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. Conclusions: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

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Section: Methodsmentioning

confidence: 99%

Public awareness of palliative care in Sweden

Westerlund¹,

Tishelman

Benkel

et al. 2018

Scand J Public Health

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“…While these data do not give clear answers as to how EoL care should be organized or provided, they raise numerous issues for our consideration, and from the responses, clearly have also stimulated reflection among the museum visitors. 38 …”

Section: Ideas and Approaches Underlying The Döbra Programmentioning

confidence: 99%

Going public: reflections on developing the DöBra research program for health-promoting palliative care in Sweden

Lindqvist

Tishelman

2016

Progress in Palliative Care

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Introduction: Public health approaches to end-of-life (EoL) research and care are relatively rare in Sweden, and health-promoting palliative care (HPPC) remains a foreign concept for most. We recently consolidated our HPPC endeavors into a cohesive research program, DöBra, to promote constructive change and awareness to support better quality of life and death among the general population, in specific sub-groups, and in interventions directed to professional groups caring for dying individuals, their friends and families. Objectives: In this article, we aim to share ideas, experiences, and reflections from the early stages of this research program, particularly in relation to how we try to work with new ‘publics’, to contribute to the development of HPPC as a new research field. Methods and Results: We discuss some considerations which arise in the Swedish context, and present the underlying ideas and approaches used in the research program, with examples of their application. HPPC, based on ideas from new public health, is essential as an umbrella for the DöBra program. Action research, experience-based co-design, and knowledge exchange, all aim to bring together a variety of stakeholders to exchange ideas and expertise, and co-create experience-based evidence through knowledge generation, dissemination, and sharing. Discussion: In reflecting on what we have learned about publics and partnerships in EoL research to date, we question distinctions made between professionals and publics, concluding that including publics in public health research, means also including ourselves and making public many of the reflections, the mistakes, and the experiences we all have, to foster collective learning.

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“…An arts project bringing hospice users and school pupils together appeared to help normalize death for school pupils. 35,36 3. A public information road show engaged people using an informal questionnaire survey and eased conversations between those who participated.…”

Section: Palliative Care Campaigns S-31mentioning

confidence: 99%

The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care

Seymour

2018

Journal of Palliative Medicine

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Objective: The right to health includes a right of access to good quality palliative care, but inequalities persist. Raising awareness is a key plank of the public health approach to palliative care, but involves consideration of subjects most of us prefer not to address. This review addresses the question: ''do public health awareness campaigns effectively improve the awareness and quality of palliative care''? Background: The evidence shows that public awareness campaigns can improve awareness of palliative care and probably improve quality of care, but there is a lack of evidence about the latter. Methods: Rapid review and synthesis. Results: A comprehensive public awareness campaign about palliative care (including advance care planning and end-of-life decision making) should be based on clear and shared terminology, use well piloted materials, and the full range of mass media to suit different ages, cultures, and religious/spiritual perspectives. Arts and humanities have a role to play in allowing individuals and communities to express experiences of illness, death, and grief and encourage conversation and thoughtful reflection. There is evidence about key factors for success: targeting, networking, and use of specific, measurable, achievable, realistic time-bound objectives; continuous evaluation; and complementarity to national and international policy. Discussion: Campaigns should be located within the framework of public health promotion and the synergy between short national mass media campaigns and longer term local community action initiatives carefully considered. National and local projects to raise awareness should identify and address any barriers at the level of individuals, communities, and systems of care, for example, literacy skills and unequal access to resources.

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Room for Death – International museum-visitors’ preferences regarding the end of their life

Cited by 24 publications

References 40 publications

Public awareness of palliative care in Sweden

Public awareness of palliative care in Sweden

Going public: reflections on developing the DöBra research program for health-promoting palliative care in Sweden

The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care

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