Associations between the spread of COVID-19 and end-of-life circumstances in the non-infected population of Sweden.

AIMS: Since its outbreak in 2020, the COVID-19 pandemic has directly caused the premature death of millions. However, indirect consequences, such as social restrictions, have affected a far greater number. We explored the association between the spread of COVID-19 and end-of-life circumstances in the infected and non-infected population in Sweden. METHODS: In this descriptive, population-based, observational study, we primarily used data from the Swedish National Registry of Palliative Care, which covers about 60% of all deaths in Sweden. We explored the association between the spread of COVID-19 and place of death, people present at death and end-of-life symptoms using regression analyses. RESULTS: The study included 190,291 individuals who died in any region of Sweden from 1 January 2019 to 30 June 2022, of which 10,646 were COVID-19 cases. Correlated to the temporal and geographical spread of COVID-19, there was a greater proportion of individuals dying without the presence of their next-of-kin, and consequently more people dying alone, both in those with and without COVID-19. There was a similar pattern of a greater proportion of deaths taking place in nursing homes and in the individual's own home. However, we did not find substantial associations to reported symptoms, such as anxiety or confusion. CONCLUSIONS: This study shows the profound effects of the COVID-19 pandemic on end-of-life circumstances in both the infected and non-infected population in Sweden. As we prepare for future pandemics, there is a need to develop strategies to minimise the impact on non-infected individuals.

Death rituals and quality of life of bereaved relatives during the COVID-19 pandemic: Results of the observational CO-LIVE study.

Grief is a normal reaction after the death of a loved one. Death rituals are an integral part of the mourning processes. Not being able to carry out death rituals can affect relatives' quality of life. The aim was to evaluate death rituals during COVID-19 and their association with relatives' quality of life. In a Swedish nation-wide study relatives to persons who died during the COVID-19-pandemic received questionnaires about their quality of life and how they could perform death rituals. Association between quality of life and death rituals was analyzed with linear regression. Of the 324 relatives, a minority indicated that their loved one's funeral (17%) met their wishes. Not being able to carry out the funeral as desired was significantly associated with a lower quality of life (p = 0.006). The experiences during the pandemic revealed that it is important for people to perform death rituals according to their wishes.

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. Such a guide should both meet the needs of health care professionals and patients and families, facilitating discussion around end-of-life decision-making and enabling them to plan for the remaining time in life. The aim of this article is to describe the development and pilot testing of a novel Swedish palliative care guide. METHODS: The Swedish Palliative Care Guide (S-PCG) was developed according to the Medical Research Council framework and based on national and international guidelines for good palliative care. An interdisciplinary national advisory committee of over 90 health care professionals together with patient, family and public representatives were engaged in the process. The feasibility was tested in three pilot studies in different care settings. RESULTS: After extensive multi-unit and interprofessional testing and evaluation, the S-PCG contains three parts that can be used independently to identify, assess, address, follow up, and document the individual symptoms and care-needs throughout the whole palliative care trajectory. The S-PCG can provide a comprehensive overview and shared understanding of the patients' needs and possibilities for ensuring optimal quality of life, the family included. CONCLUSIONS: Based on broad professional cooperation, patients and family participation and clinical testing, the S-PCG provides unique interprofessional guidance for assessment and holistic care of patients with palliative care needs, promotes support to the family, and when properly used supports high-quality personalised palliative care throughout the palliative trajectory. Future steps for the S-PCG, entails scientific evaluation of the clinical impact and effect of S-PCG in different care settings - including implementation, patient and family outcomes, and experiences of patient, family and personnel.

Acute and long-term grief reactions and experiences in parentally cancer-bereaved teenagers.

BACKGROUND: Previous research shows that many cancer-bereaved youths report unresolved grief several years after the death of a parent. Grief work hypothesis suggests that, in order to heal, the bereaved needs to process the pain of grief in some way. This study explored acute grief experiences and reactions in the first 6 months post-loss among cancer-bereaved teenagers. We further explored long-term grief resolution and potential predictors of having had "an okay way to grieve" in the first months post-loss. METHODS: We used a population-based nationwide, study-specific survey to investigate acute and long-term grief experiences in 622 (73% response rate) bereaved young adults (age > 18) who, 6-9 years earlier, at ages 13-16 years, had lost a parent to cancer. Associations were assessed using bivariable and multivariable logistic regression. RESULTS: Fifty-seven per cent of the participants reported that they did not have a way to grieve that felt okay during the first 6 months after the death of their parent. This was associated with increased risk for long-term unresolved grief (odds ratio (OR): 4.32, 95% confidence interval (CI): 2.99-6.28). An association with long-term unresolved grief was also found for those who reported to have been numbing and postponing (42%, OR: 1.73, 95% CI: 1.22-2.47), overwhelmed by grief (24%, OR: 2.02, 95% CI: 1.35-3.04) and discouraged from grieving (15%, OR: 2.68, 95% CI: 1.62-4.56) or to have concealed their grief to protect the other parent (24%, OR: 1.83, 95% CI: 1.23-2.73). Predictors of having had an okay way to grieve included being male, having had good family cohesion, and having talked about what was important with the dying parent. CONCLUSION: More than half of the cancer-bereaved teenagers did not find a way to grieve that felt okay during the first 6 months after the death of their parent and the acute grief experiences and reaction were associated with their grief resolution long-term, i.e. 6-9 years post-loss. Facilitating a last conversation with their dying parent, good family cohesion, and providing teenagers with knowledge about common grief experiences may help to prevent long-term unresolved grief.

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. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

Poor Psychosocial Well-Being in the First Year-and-a-Half After Losing a Parent to Cancer - A Longitudinal Study Among Young Adults Participating in Support Groups.

The purpose of this study was to investigate variations in psychosocial well-being over time among young adults who participated in a support group after the death of a parent from cancer. Fifty-five young adults, aged 16-28 years, completed questionnaires that measured self-esteem, anxiety, depression, and life satisfaction at three time-points during the first year-and-one-half after the loss. Results indicated overall poor psychosocial well-being with few increases in psychological health over the study period, despite access to support and social networks. However, these resources may help to prevent major impairments in the participants' future lives.

Leadership in specialist palliative home care teams: A qualitative study.

AIM: The aim of this study was to describe team leaders' experiences of facilitators and barriers of leadership in specialist palliative home care teams. BACKGROUND: For effective teamwork in specialist palliative care, leadership is crucial; however, defining and agreeing on what leadership comprises may be challenging. In palliative care, teamwork is recognized as imperative for multiprofessional perspectives to meet dying patients' and families' needs. METHODS: Qualitative interviews with 13 team leaders in specialist palliative home care were performed, using the Pettigrew and Whipp framework, and analysed with directed content analysis. RESULTS: Team leaders' experiences of conditions influencing the organisation and delivery of specialist palliative home care is multifaceted and leaders seem conflicted in their approach to the multiple levels of leadership, vision and responsibilities. CONCLUSION: Team leaders in specialist palliative home care described goals of care on differing levels and, for some, fiscal restraints and external pressures influenced their vision and leadership. Team leaders experienced challenges of leadership in relation to organisational issues, feeling burdened by responsibilities, budget restraints and team size. IMPLICATIONS FOR NURSING MANAGEMENT: Team leadership is demanding and complex. In specialist palliative home care, affirming values and enabling vision during times of fiscal strain and external pressures, is challenging. For successful leadership that develops both individuals and the health care team, leaders are recommended to adapt the leadership style to the present situation surrounding the team.

Psychometric evaluation of the anticipatory grief scale in a sample of family caregivers in the context of palliative care.

INTRODUCTION: In palliative care, family caregivers are often faced with experiences of grief in anticipation of the loss of a close person. An instrument designed to measure this form of grief is the Anticipatory Grief Scale, which includes 27 items and has been used in several studies in various contexts. However, the instrument has not been validated. AIM: The aim was to evaluate the psychometric properties, focusing on the factor structure, of the Anticipatory Grief Scale in a sample of family caregivers in palliative care. METHODS: The study had a cross-sectional design. Data were collected from an intervention study in palliative home care that took place between 2013 and 2014. In total, 270 family caregivers in palliative care completed a baseline questionnaire, including the Anticipatory Grief Scale. The factor structure of the scale was evaluated using exploratory factor analysis. RESULTS: The initial factor analysis suggested a four-factor solution, but, due to weak communalities, extensive crossloadings, and item inconsistencies, the model was problematic. Further analysis supported that the scale should be reduced to 13 items and two factors. The two subscales captured the behavioral and emotional reactions of grief in family caregivers in palliative care and were named Behavioral reactions and Emotional reactions. This modified version will hereafter be named AGS-13. CONCLUSIONS: This validation study of the Anticipatory Grief Scale resulted in a revised two-factor model, AGS-13, that appears to be promising for use in palliative care but needs to be tested further.

Team type, team maturity and team effectiveness in specialist palliative home care: an exploratory questionnaire study.

To meet complex needs in persons and families within specialist palliative care, care team members are expected to work together in performing a comprehensive assessment of patient needs. Team type (how integrated team members work) and team maturity (group development) have been identified as components in team effectiveness and productivity. The aim of the study reported in this paper was to identify team types in specialist palliative care in Sweden, and to explore associations between team type, team maturity and team effectiveness in home care teams. A national web-based survey of team types, based on Thylefors questionnaire, and a survey of healthcare professionals using the Group Development Questionnaire (GDQ-SE3) to assess team developmental phase, effectiveness and productivity were used in an exploratory cross-sectional design. The participants were: Specialist palliative care teams in Sweden registered in the Palliative Care Directory (n = 77), and members of 11 specialist palliative home care teams. Teams comprised physicians, registered nurses, social workers, physiotherapists and/or occupational therapists, full-or part-time. Our national web survey results showed that the 77 investigated teams had existed from 7 to 21 years, were foremost of medium size and functioned as inter- or transprofessional teams. Results from the 61 HCPs, representing 11 teams, indicated that more mature teams tended to work in an integrated manner, rather than in parallel. The effectiveness ratio varied from 52% to 86% in teams. Recommendations arising from our findings include the need for clarification of team goals and professional roles together with prioritizing the development of desirable psychosocial traits and team processes in clinical settings.

The integrated palliative care outcome scale for patients with palliative care needs: Factors related to and experiences of the use in acute care settings.

OBJECTIVE: Implementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals' experiences of the use of IPOS in acute care settings. METHOD: Data were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed. RESULT: A total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals' participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: "IPOS acting as a facilitator" and "barriers to the use of IPOS." The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals' feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS. SIGNIFICANCE OF RESULTS: We found an association between healthcare professionals' participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.