Dealing With Temporality in Patients With Life-Limiting Disease: An International Qualitative Study.

The prospect of death influences people's thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using thematic analysis at three levels (i.

'Someone must do it': multiple views on family's role in end-of-life care - an international qualitative study.

Background: Family is a crucial social institution in end-of-life care. Family caregivers are encouraged to take on more responsibility at different times during the illness, providing personal and medical care. Unpaid work can be overburdening, with women often spending more time in care work than men.

Nurses' experiences of using the Integrated Palliative care Outcome Scale with patients in specialized palliative care-A qualitative focus group study.

Aim: To explore nurses' experiences of using the Integrated Palliative care Outcome Scale (IPOS) as a communication tool in specialized palliative care.

Design: This study employed a qualitative inductive approach. The Standards for Reporting Qualitative Research were followed for reporting.

Increased patient satisfaction by integration of palliative care into geriatrics-A prospective cohort study.

Background: Integration of oncology and palliative care has been shown to increase quality of life in advanced disease. To meet the needs of the growing older population, integration of palliative care and geriatrics has been proposed but scarcely described.

Objectives: The aim of this study was to integrate palliative care into geriatrics by a structured care guide, the Swedish Palliative Care Guide, and to evaluate its effect on patient satisfaction, health-related quality of life and symptom burden, compared to a control group.

Striving towards normality in an unpredictable situation. A qualitative interview study of how persons newly diagnosed with incurable oesophageal and gastric cancer manage everyday life.

Purpose: Getting an incurable oesophageal or gastric cancer diagnosis is a major stressful life event associated with severe physical, psychosocial and existential challenges. To provide timely and efficient support, based on patients' experiences, the aim of the study was to explore how patients newly diagnosed with incurable oesophageal and gastric cancer manage everyday life.

Method: Semi-structured interviews were conducted with 12 patients 1-3 months after being diagnosed with incurable oesophageal or gastric cancer.

Dying during the COVID-19 Pandemic in Sweden: Relatives' Experiences of End-of-Life Care (the CO-LIVE Study).

Background: The COVID-19 pandemic has seen many deaths, but the majority were for causes other than COVID-19. However, end-of-life care in all settings has been affected by measures limiting the spread of the virus, for patients with and without COVID-19. The Swedish coronavirus strategy was different compared to many other countries, which might have affected end-of-life care.

Symptoms, problems and quality of life in patients newly diagnosed with oesophageal and gastric cancer - a comparative study of treatment strategy.

Background: Patients with oesophageal and gastric cancer have a low likelihood of being cured and suffer from a broad spectrum of symptoms and problems that negatively affect their quality-of-life (QOL). Although the majority (67-75%) of patients at the time of diagnosis suffer from an incurable disease, research has primarily focused on the pre- and postoperative phase among patients treated with curative intent, with little attention to symptoms and problems in the diagnostic phase, especially in those who cannot be offered a cure.

Methods: In this cross-sectional study 158 patients newly diagnosed with oesophageal and gastric cancer visiting the surgical outpatient department for a preplanned care visit were included consecutively during 2018-2020.

Similarities and differences between China and Sweden regarding the core features of palliative care for people aged 60 or older: a systematic scoping review.

Background: Despite the increasing longevity of the world's population, with an unprecedented rise in the number of people who need palliative care (PC), there has been sparse research regarding palliative care for older people, especially when it comes to comparison of PC between healthcare systems and cultures. The aim of this systematic scoping review was to identify the characteristics of the body of literature and to examine the knowledge gaps concerning PC research for older people (> 60 years) in two healthcare systems and cultures, mainland China and Sweden.

Methods: The guidelines PRISMA (Preferred Reporting Items for Systematic Reviews), and PICOS (Patient/population, Intervention, Comparison/control, and Outcome) were used.

A Reduced Deck of Conversation Cards of Wishes and Priorities of Patients in Palliative Care.

The individual wishes and priorities of patients with advanced disease are too often neglected, making a deck of cards with statements reflecting potential wishes and priorities a useful conversation tool. However, in the most ill patients, the card selection and sorting process may be too strenuous. The aims of this study were to explore the wishes and priorities of patients receiving palliative care and to reduce a deck of statement cards to be clinically useable even for the most ill patients.

A novel care guide for personalised palliative care - a national initiative for improved quality of care.

Background: Even when palliative care is an integrated part of the healthcare system, the quality is still substandard for many patients and often initiated too late. There is a lack of structured guidelines for identifying and caring for patients; in particular for those with early palliative care needs. A care guide can act as a compass for best practice and support the care of patients throughout their palliative trajectory.

Sensations, symptoms, and then what? Early bodily experiences prior to diagnosis of lung cancer.

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 analyzed retrospective accounts of 61 people diagnosed with LC in Denmark, England and Sweden.

Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

Background: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person.

Co-afflicted but invisible: A qualitative study of perceptions among informal caregivers in cancer care.

This article explores the lived experience of informal caregivers in cancer care, focusing on the perceived burden and needs of individuals seeking support from an informal group for next of kin. A total of 28 individuals who were closely related to a patient with cancer participated in focus group interviews. Three themes were identified: setting aside one's own needs, assuming the role of project manager, and losing one's sense of identity.

Dying With Unrelieved Pain-Prescription of Opioids Is Not Enough.

Context: Fear of pain resonates with most people, in particular, in relation to dying. Despite this, there are still people dying with unrelieved pain.

Objectives: We quantified the risk, and investigated risk factors, for dying with unrelieved pain in a nationwide observational cohort study.

Qualitative cross-country comparison of whether, when and how people diagnosed with lung cancer talk about cigarette smoking in narrative interviews.

Objectives: To compare and examine whether, when and how patients with lung cancer in three countries, with different survival rates, talk about cigarette smoking and its relationship with help-seeking.

Design: A qualitative cross-country comparison with analysis of narrative interviews.

Setting: Participants in Sweden, Denmark and England were interviewed during 2015-2016.

Being acknowledged by others and bracketing negative thoughts and feelings: Frail older people's narrations of how existential loneliness is eased.

Aims And Objectives: The aim of this study was to describe how EL was eased, as narrated by frail older people.

Background: Existential loneliness (EL) is an unavoidable part of the human condition. It is a complex phenomenon that has been described as disconnection from life.

Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.

Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions.

Quality of care for the dying across different levels of palliative care development: A population-based cohort study.

Background: There is a lack of knowledge about how the provision and availability of specialized palliative care relates to the quality of dying in hospital and community-based settings.

Aim: We aimed to explore the quality of care during last week of life in relation to different levels of palliative care development.

Design: We investigated access to palliative care in Southern Sweden, where one region offers palliative care in accordance with European Association for Palliative Care guidelines for capacity, and the other region offers less developed palliative care.

Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes.

Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents.

It is important that the process goes quickly, isn't it?" A qualitative multi-country study of colorectal or lung cancer patients' narratives of the timeliness of diagnosis and quality of care.

Purpose: The emphasis on early diagnosis to improve cancer survival has been a key factor in the development of cancer pathways across Europe. The aim of this analysis was to explore how the emphasis on early diagnosis and timely treatment is reflected in patient's accounts of care, from the first suspicion of colorectal or lung cancer to their treatment in Denmark, England and Sweden.

Method: We recruited 155 patients in Denmark, England and Sweden who were within six months of being diagnosed with lung or colorectal cancer.

Public awareness of palliative care in Sweden.

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.

Being disconnected from life: meanings of existential loneliness as narrated by frail older people.

Objectives: This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people.

Method: Data were collected through individual narrative interviews with 23 people 76-101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naïve reading and two structural analyses as a basis for a comprehensive understanding of EL.

Beyond the visual and verbal: Using participant-produced photographs in research on the surroundings for care at the end-of-life.

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 inhabiting them in the last phases of life, based on participant-produced photographs with follow-up interviews.