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- De Vleminck, A, et al.
(författare)
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Engagement of specialized palliative care services with the general public: A population-level survey in three European countries
- 2022
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Ingår i: Palliative medicine. - : SAGE Publications. - 1477-030X .- 0269-2163. ; 36:5, s. 878-888
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Tidskriftsartikel (refereegranskat)abstract
- There is growing recognition of a need for community capacity development around serious illness, dying and loss, complementary to strategies focussing on health services. Hitherto, little is known about how and to what extent palliative care services in different countries are adopting these ideas in their practices. Aim: To examine views towards and actual involvement in community engagement activities as reported by specialized palliative care services in Belgium, Sweden and the UK. Design, setting, participants: Cross-sectional survey among all eligible specialized palliative care services in Flanders (Belgium) ( n = 50), Sweden ( n = 129) and the UK ( n = 245). Representatives of these services were invited to complete an online questionnaire about their actual activities with the general public and their attitudes regarding such activities. Results: Response rates were 90% (Belgium), 71% (Sweden) and 49% (UK). UK services more often reported engaging with the general public to develop knowledge and skills through a range of activities (80%–90%) compared to Belgian (31%–71%) and Swedish services (19%–38%). Based on a combination of engagement activities 74% of UK services could be labelled as extending their focus beyond the clinical mandate compared to 16% in Belgium and 7% in Sweden. Services’ dependency on charitable donations was strongly associated with increased engagement with the general public. Conclusion: An expansion of the mandate of specialized palliative care services beyond a traditional clinically-oriented focus towards one inclusive of community capacity building around serious illness, dying and loss is occurring in different countries, albeit to different degrees and with different intensities.
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- Eneslätt, Malin, et al.
(författare)
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Dissemination, Use and Impact of a Community-based, Conversational Advance Care Planning Intervention: Ripple Effects of the Swedish DöBra cards
- 2021
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Ingår i: Palliative Medicine. - : Sage Publications. - 0269-2163 .- 1477-030X. ; 35:1_suppl
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: There is growing interest in community-based advance care planning (ACP) interventions, but few studies investigate the societal impact of such initiatives. A Swedish adaptation of the GoWish cards, the DöBra cards, were used as a tool in the SweACP participatory action research project with older people in the community, without imminent End-of-Life (EoL) care needs. Due to popular demand, the DöBra cards were later made available to the general public as a social innovation.Aim: To explore how the publicly available DöBra cards have been disseminated and used without researchers’ engagement, to provide a basis for understanding their impact in a wider community setting.Methods: Using a Ripple Effects Mapping approach, we followed three chains of dissemination of the DöBra cards originating in a patient organization, a national interest organization for older people, and in a health care organization. Data were collected through interviews with 20 participants and analyzed with directed content analysis.Results: A variety of strategies for use were noted, as the DöBra cards were adapted to fit needs in different personal, professional, and organizational settings. The cards were found to act as both a means to raise awareness about EoL issues in different contexts, as well as an end in themselves, e.g. by facilitating ACP conversations for people with serious disease. Resistance, from various instances, to use or promotion of the DöBra cards was however also found. Impact included personal development as well as strengthened personal and professional relationships, with potential to affect EoL care provision.Conclusions: The broad dissemination of the DöBra cards in a variety of contexts beyond those controlled by researchers, has led to capacity building in dealing with EoL issues in the community, as the topic of dying and death has been brought to agendas in new contexts.
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- Johansson, T, et al.
(författare)
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Continuums of Change in a Competence-Building Initiative Addressing End-of-Life Communication in Swedish Elder Care
- 2021
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Ingår i: Qualitative health research. - : SAGE Publications. - 1049-7323 .- 1552-7557. ; 31:10, s. 1904-1917
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Tidskriftsartikel (refereegranskat)abstract
- Conversations about values for the end-of-life (EoL) between residents, relatives, and staff may allow EoL preparation and enable value-concordant care, but remain rare in residential care home (RCH) practice. In this article, longitudinal qualitative analysis was used to explore changes in staff discussions about EoL conversations throughout workshop series based on reflection and knowledge exchange to promote EoL communication in RCHs. We identified three overall continuums of change: EoL conversations became perceived as more feasible and valuable; conceptualizations of quality EoL care shifted from being generalizable to acknowledging individual variation; and staff’s role in facilitating EoL communication as a prerequisite for care decision-making was emphasized. Two mechanisms influenced changes: cognitively and emotionally approaching one’s own mortality and shifting perspectives of EoL care. This study adds nuance and details about changes in staff reasoning, and the mechanisms that underlie them, which are important aspects to consider in future EoL competence-building initiatives.
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| 8. |
- Levitsky, A., et al.
(författare)
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Using patients' own knowledge of early sensations and symptoms to develop an interactive, individualized e-questionnaire to facilitate early diagnosis of lung cancer
- 2021
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Ingår i: BMC Cancer. - : Springer Science and Business Media LLC. - 1471-2407. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundOne reason for the often late diagnosis of lung cancer (LC) may be that potentially-indicative sensations and symptoms are often diffuse, and may not be considered serious or urgent, making their interpretation complicated. However, with only a few exceptions, efforts to use people's own in-depth knowledge about prodromal bodily experiences has been a missing link in efforts to facilitate early LC diagnosis. In this study, we describe and discuss facilitators and challenges in our process of developing and initial testing an interactive, self-completion e-questionnaire based on patient descriptions of experienced prodromal sensations and symptoms, to support early identification of lung cancer (LC).MethodsE-questionnaire items were derived from in-depth, detailed explorative interviews with individuals undergoing investigation for suspected LC. The descriptors of sensations/symptoms and the background items obtained were the basis for developing an interactive, individualized instrument, PEX-LC, which was refined for usability through think-aloud and other interviews with patients, members of the public, and clinical staff.ResultsMajor challenges in the process of developing PEX-LC related to collaboration among many actors, and design/user interface problems including technical issues. Most problems identified through the think-aloud interviews related to design/user interface problems and technical issues rather than content, for example we re-ordered questions to be in line with patients' chronological, rather than retrospective, descriptions of their experiences. PEX-LC was developed into a final e-questionnaire on a touch-screen smart tablet with one background module covering sociodemographic characteristics, 10 interactive, individualized modules covering early sensations and symptoms, and a 12th assessing current symptoms.ConclusionsClose collaboration with patients throughout the process was intrinsic for developing PEX-LC. Similarly, we recognized the extent to which clinicians and technical experts were also important in this process. Similar endeavors should assure all necessary competence is included in the core research team, to facilitate timely progress. Our experiences developing PEX-LC combined with new empirical research suggest that this individualized, interactive e-questionnaire, developed through systematizing patients' own formulations of their prodromal symptom experiences, is both feasible for use and has potential value in the intended group.
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- Pesut, B, et al.
(författare)
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Nursing and euthanasia: A narrative review of the nursing ethics literature
- 2020
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Ingår i: Nursing ethics. - : SAGE Publications. - 1477-0989 .- 0969-7330. ; 27:1, s. 152-167
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Tidskriftsartikel (refereegranskat)abstract
- Medical Assistance in Dying, also known as euthanasia or assisted suicide, is expanding internationally. Canada is the first country to permit Nurse Practitioners to provide euthanasia. These developments highlight the need for nurses to reflect upon the moral and ethical issues that euthanasia presents for nursing practice. Purpose: The purpose of this article is to provide a narrative review of the ethical arguments surrounding euthanasia in relationship to nursing practice. Methods: Systematic search and narrative review. Nine electronic databases were searched using vocabulary developed from a stage 1 search of Medline and CINAHL. Articles that analysed a focused ethical question related to euthanasia in the context of nursing practice were included. Articles were synthesized to provide an overview of the literature of nursing ethics and euthanasia. Ethical Considerations: This review was conducted as per established scientific guidelines. We have tried to be fair and respectful to the authors discussed. Findings: Forty-three articles were identified and arranged inductively into four themes: arguments from the nature of nursing; arguments from ethical principles, concepts and theories; arguments for moral consistency; and arguments from the nature of the social good. Key considerations included nursing’s moral ontology, the nurse–patient relationship, potential impact on the profession, ethical principles and theories, moral culpability for acts versus omissions, the role of intention and the nature of the society in which euthanasia would be enacted. In many cases, the same assumptions, values, principles and theories were used to argue both for and against euthanasia. Discussion: The review identified a relative paucity of literature in light of the expansion of euthanasia internationally. However, the literature provided a fulsome range of positions for nurses to consider as they reflect on their own participation in euthanasia. Many of the arguments reviewed were not nursing-specific, but rather are relevant across healthcare disciplines. Arguments explicitly grounded within the nature of nursing and nurse–patient relationships warrant further exploration.
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