Carol Tishelman

Carol Tishelman
Karolinska Institutet | KI · Dept of Learning Informatics Management and Ethics Divisoin of Innovative Care Resarch

PhD

About

223
Publications
50,207
Reads
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10,474
Citations
Citations since 2017
44 Research Items
5989 Citations
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Additional affiliations
October 2014 - present
Karolinska University Hospital
Position
  • University Nurse with responsiblility for strategic health care innovation
September 2007 - present
Karolinska Institutet
Position
  • Professor (Full)

Publications

Publications (223)
Article
Full-text available
Background Public health tools like the Go Wish card game from the US, have been found useful to support people in reflecting on their end-of-life preferences, but a cultural adaptation is essential for their success. In the present study, we explore the necessary cultural adaptations to the Go Wish cards by applying an extensive, systematic, and c...
Article
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Background The legalization of Medical Assistance in Dying in Canada in 2016 provided new impetus for improving palliative care. This commitment to improvement included the development of a National Palliative Care Framework and Action Plan. The purpose of this study was to understand the progress made in palliative care since 2016 from the perspec...
Article
Background/objectives Call-bells are often taken-for-granted systems to heighten safety. In joint discussions among residential care home (RCH) residents, their family members, and staff, issues related to call-bell use in everyday life and work were repeatedly raised. In this article, we explore these experience-based perspectives, addressing seve...
Article
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In this article, we explore the perspectives of 13-15-year-olds living in Sweden about the first wave of the Covid-19 pandemic, through inductive analysis of 187 of their drawings. Through reconstructive serial picture analysis, three types of meaning were derived: (1) A new normal in dystopian scenery points to the disruption of daily life and dev...
Article
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Background A health promotion approach to end-of-life (EoL) care is gaining traction internationally. However, there is a lack of evaluations of the impact of this approach, particularly regarding community-based initiatives. Conceptualizations of impact in participatory action research (PAR) may contribute to understanding ways in which impact can...
Article
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Background Proactive conversations about individual preferences between residents, relatives, and staff can support person-centred, value-concordant end-of-life (EOL) care. Nevertheless, prevalence of such conversations is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skills and confidence. Using tools may...
Article
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Background: 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...
Article
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Intoduction Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited. Aim We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra...
Article
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Background End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on...
Conference Paper
Background: Residential care homes (RCHs) are increasingly providers of end-of-life (EOL) care, with staff playing a central role in communication about matters related to dying and death. While residents are generally positive to opportunities to discuss thoughts, preferences, and concerns related to the EOL, such conversations remain rare in prac...
Preprint
Full-text available
Background: If EOL care is to be person-centred and value-concordant, proactive conversations about individual preferences between residents, relatives, and staff are required. Nevertheless, the prevalence of conversations about preferences for EOL care is still low in residential care homes (RCHs), often relating to staff’s perceived lack of skill...
Article
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Introduction & Aim Despite increasing interest in community-based advance care planning interventions, few studies investigate the societal impact of such initiatives. The DöBra cards, a Swedish adaptation of the GoWish cards, were first used for advance care planning conversations in a participatory action research project and later, due to popula...
Article
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Background The Covid-19 pandemic has had unprecedented effects on individual lives and livelihoods as well as on social, health, economic and political systems and structures across the world. This article derives from a unique collaboration between researchers and museums using rapid response crowdsourcing to document contemporary life among the g...
Article
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Talking about dying, death, and loss may be difficult. Arts offer alternative ways of engaging with end-of-life (EoL) issues, but little is known about the means through which this occurs. In this article, we aim to explore mechanisms in arts activities that support community engagement with EoL issues, based on the community-based participatory ac...
Article
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There is limited empirical data about both health and end-of-life (EoL) issues among the Indigenous Sámi of Fennoscandia. We therefore aimed to investigate experiences of EoL care and support among the Sámi, both from the Sámi community itself as well as from more formalized health and social care services in Sweden. Our primary data source is from...
Article
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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 works...
Article
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Background One 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 experien...
Article
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Lung cancer (LC) generally lacks unique core symptoms or signs. However, there are a multitude of bodily sensations that are often non-specific, not easily understood, and many times initially not recognized as indicative of LC by the affected person, which often leads to late diagnosis. In this international qualitative study, we inductively analy...
Article
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In this narrative study, we investigate salient Sámi-specific aspects of a death system, inspired by Kastenbaum's model. We explore traditional Sámi knowledge derived through storytelling in go-along group discussions to gravesites at the tree-line with cultural and historical significance for the Indigenous Sámi peoples. Analysis illustrates how i...
Article
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Nurses play a central role in Medical Assistance in Dying (MAiD) in Canada. However, we know little about nurses’ experiences with this new end-of-life option. The purpose of this study was to explore how nurses construct good nursing practice in the context of MAiD. This was a qualitative interview study using Interpretive Description. Fifty-nine...
Article
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Purpose Hospital organizational features related to registered nurses' (RNs') practice environment are often studied using quantitative measures. These are however unable to capture nuances of experiences of the practice environment from the perspective of individual RNs. The aim of this study is therefore to investigate individual RNs’ experiences...
Article
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Studio DöBra is a community‐based initiative in which children (9 y/o) and older adults (mostly 80+) engaged with topics related to dying, death and loss through shared arts activities (e.g. collage, sculpture, games). In an ageing society, Sweden's end‐of‐life (EoL) care is increasingly professionalised and specialised, but there is little communi...
Article
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Background and objectives: There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults' reasoning about end-of...
Article
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Despite growing interest in Indigenous health, the lack of end-of-life (EOL) research about the Sámi people led us to explore experience-based knowledge about EoL issues among the Sámi. We aim here to describe Sámi death systems and the extent to which Kastenbaum’s conceptualisation of death systems is appropriate to Sámi culture. Transcribed conve...
Article
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Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DöBra c...
Conference Paper
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Background Sweden has no systematic advance care planning (ACP), nor judicial means of recognizing proxies in end-of-life (EoL) situations. In the SweACP project in the DöBra research program, we focus on engaging stakeholders in active conversations about preferences for future EoL care, rather than using a document-driven approach to ACP. We desc...
Article
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The aim of this study was to identify a combination of early predictive symptoms/sensations attributable to primary lung cancer (LC). An interactive e-questionnaire comprised of pre-diagnostic descriptors of first symptoms/sensations was administered to patients referred for suspected LC. Respondents were included in the present analysis only if th...
Article
Full-text available
Lack of community engagement in end-of-life issues and age-segregation in Swedish society motivated us to develop Studio DöBra, a community-based intergenerational arts initiative to support community engagement in end-of-life issues and develop intergenerational meeting places. Representatives from several community organizations formed a project...
Article
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Background: 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:...
Presentation
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Aims: The aim of this study is to identify early predictive symptoms and sensations attributable to lung cancer (LC). Methods: An online, interactive questionnaire — PEKLUNG, comprised of 285 patient generated descriptors of first sensations that led to investigation for possible LC and covering ten different symptom/sensation modules— was administ...
Poster
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While discourse about dying and death in RCHs often has a negative focus, in this project we work with constructive change processes, which can better support quality of Iife and death in RCHs.
Article
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Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings....
Article
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While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliati...
Article
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Taste and smell alterations have been recognized as common symptoms in relation to various cancers. However, previous research suggests that patients do not receive sufficient support in managing taste and smell alterations. Therefore, the objective of this study is to investigate how persons with experience from lung cancer-related taste and smell...
Article
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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 induc...
Article
Public health and health promotion approaches to end-of-life (EoL) research and care are still rare in Sweden. People remain generally ill-prepared for encounters with death and unable to advocate for quality EoL care; this may be reflected in Sweden's low scores for community engagement in the 2015 Quality of Death index. We have consolidated our...
Article
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Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic proces...
Article
Background: Cancer survival in the UK and Denmark are lower when compared with similar countries with late diagnosis a possible cause. We aimed to study the relationship between barriers to attending a primary care physician (GP) and anticipated time to help seeking (ATHS) with four cancer symptoms in six countries. Methods: A population-based s...
Article
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Background: Variation in post-operative mortality rates has been associated with differences in registered nurse staffing levels. When nurse staffing levels are lower there is also a higher incidence of necessary but missed nursing care. Missed nursing care may be a significant predictor of patient mortality following surgery. Aim: Examine if miss...
Article
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The web of relationships between wellbeing and the environments in which people live has long been recognized. However, relatively little research has been conducted about end-of-life surroundings from the perspective of the dying person. In this study, we investigate which aspects of their surroundings are particularly meaningful for the people in...
Article
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Background Quality and safety in health care has been increasingly in focus during the past 10–15 years. Stakeholders actively discuss ways to measure safety and quality of care to improve the health care system as a whole. Defining and measuring quality and safety, however, is complicated. One underutilized resource worthy of further exploration i...
Article
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Background: The thentest design aims to detect and control for recalibration response shift. This design assumes (1) more consistency in the content of the cognitive processes underlying patients' quality of life (QoL) between posttest and thentest assessments than between posttest and pretest assessments; and (2) consistency in the time frame and...
Article
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Aims: To determine factors associated with variation in ‘care left undone’ (also referred to as “missed care”) by registered nurses in acute hospital wards in Sweden. Background: ‘Care left undone’ has been examined as a factor mediating the relationship between nurse staffing and patient outcomes. The context has not previously been explored to d...
Article
Background Recent epidemiologic data show that Denmark has considerably poorer survival from common cancers than Sweden. This may be related to a lower awareness of cancer symptoms and longer patient intervals in Denmark than in Sweden. The aims of this study were to: 1) compare population awareness of three possible symptoms of cancer (unexplained...
Article
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Background: Nursing turnover is a major issue for health care managers, notably during the global nursing workforce shortage. Despite the often hierarchical structure of the data used in nursing studies, few studies have investigated the impact of the work environment on intention to leave using multilevel techniques. Also, differences between int...
Article
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This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research....
Article
Introduction: Public health approaches offer the opportunity to move beyond clinical and health services approaches to end-of-life (EoL) care, to focus on whole populations, individuals and communities rather than patients and carers. They also allow concepts such as capacity, resilience, and wellbeing to come to the fore. Methods: This paper, draw...
Article
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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 li...
Article
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Purpose: Taste and smell alterations (TSAs) are common symptoms in patients with cancer that may interfere with nutritional intake and quality of life. In this study, we explore and describe how characteristics of self-reported TSAs change in individuals with lung cancer over time using a multiple case study approach to present longitudinal data f...
Article
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Background Sweden and Denmark are neighbouring countries with similarities in culture, healthcare, and economics, yet notable differences in cancer statistics. A crucial component of primary prevention is high awareness of risk factors in the general public. We aimed to determine and compare awareness of risk factors for cancer between a Danish and...
Article
Malignant melanoma (MM) is increasing rapidly in Northern Europe. To reduce incidence and mortality through earlier diagnosis, public awareness of MM is important. Thus, we aim to examine awareness of risk factors and a symptom of MM, and how awareness varies by country and socio-demographic factors in Denmark, Northern Ireland (NI), Norway and Swe...
Article
Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking. To compare the effects of th...
Article
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To examine associations between perceived leadership and intention to leave the workplace due to job dissatisfaction among registered nurses (RNs) who care for patients with cancer. We also examine intention to leave in relation to proportion of cancer patients, length of time in practice, perceived adequacy of cancer care education, and burnout. T...
Article
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Purpose To contribute to increased understanding of the concept agile and its potential for hospital managers to optimize design of organizational structures and processes to combine internal efficiency and external effectiveness. Design/methodology/approach An integrative review was conducted using the reSEARCH database. Articles met the followi...
Article
: According to the WHO, public health has a mandate to: 1) Assess and monitor the health of communities and populations to identify health problems and priorities, 2) assure that all populations have access to appropriate and cost- effective care, 3) devise public policies and actions to solve identified local and national health problems and prior...
Article
: This presentation is based on our reflections as two designers entering palliative care, one working with supportive environments for death and dying and one working with issues related to health-promoting palliative care. Death, dying and mourning are important universal conditions that raise existential thought and reflection. The focus of care...
Article
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Just as pain medications aim to relieve physical suffering, supportive surrounding for death and dying may facilitate well-being and comfort. However, little has been written of the experience of or preferences for settings for death and dying. We investigate preferences for and reflections about settings for end-of-life (EoL) in an international s...
Article
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Background Health care systems in Finland, Norway and Sweden share many similarities, e.g. full-coverage and tax-financed, with predominately public sector hospitals. Despite similarities, there are differences in the working situations for RNs within these Nordic countries. The aim of this study was to analyze associations between RNs’ patient wor...
Article
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Despite concerns as to whether nurses can perform reliably and effectively when working longer shifts, a pattern of two 12- to 13-hour shifts per day is becoming common in many hospitals to reduce shift to shift handovers, staffing overlap, and hence costs. Objectives: To describe shift patterns of European nurses and investigate whether shift len...
Article
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The therapeutic potential of nonpharmacologic interventions using biographical approaches at the end of life (EoL) is being increasingly recognized, but less attention is paid to processes impeding realization of this potential. In this article, Swedish and Australian researchers reflect on and problematize experiences using one biographical approa...
Article
Background Austerity measures and health-system redesign to minimise hospital expenditures risk adversely aff ecting patient outcomes. The RN4CAST study was designed to inform decision making about nursing, one of the largest components of hospital operating expenses. We aimed to assess whether diff erences in patient to nurse ratios and nurses' ed...