INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss.
METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss.
RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief.
CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.
BACKGROUND: Maintaining quality of life including physical functioning is highly prioritized among older cancer patients. Geriatric assessment is a recommended approach to identify patients with increased vulnerability to stressors (frailty). How frailty affects quality of life and physical functioning in older cancer patients has scarcely been investigated.
AIM: Focusing on physical functioning and global quality of life, we investigated whether frailty identified by a geriatric assessment was associated with higher risk of quality-of-life deterioration during cancer treatment and follow-up.
DESIGN: Prospective, observational study. Patients were classified as frail or non-frail by a modified geriatric assessment. Quality of life was measured using the European Organization for Research and Treatment of Cancer Core Quality-of-Life Questionnaire at inclusion, 2, 4, 6 and 12 months.
SETTING: Eight Norwegian outpatient cancer clinics.
Patients Patients >=70 years with solid tumours referred for palliative or curative systemic medical cancer treatment.
RESULTS: Among 288 patients included, 140 (49%) were frail and 148 (51%) non-frail. Frail patients consistently reported poorer scores on all functioning and symptom scales. Independent of age, gender and major cancer-related factors, frail patients had significantly poorer physical functioning and global quality of life during follow-up, and opposed to non-frail patients they had both a clinically and statistically significant decline in physical functioning from baseline until 12 months.
CONCLUSIONS: Geriatric assessment identifies frail patients with increased risk of physical decline, poor functioning and high symptom burden during and following cancer treatment. Frail patients should therefore receive early supportive or palliative care.
BACKGROUND: Palliative radiotherapy (PRT) comprises half of all radiotherapy use and is an effective and important treatment modality for improving quality of life in incurable cancer patients. We have described the use of PRT in Norway and aimed to identify and quantify the impact of factors associated with PRT utilization.
MATERIAL AND METHODS: Population-based data from the Cancer Registry of Norway identified 25,281 patients who died of cancer, 1 July 2009-31 December 2011. Additionally, individual-level data on socioeconomic status and community-level data on travel distance were collected. The proportion of patients who received PRT in the last two years of life (PRT2Y) was calculated, and multivariable logistic regression was used to determine factors that influenced the PRT2Y. Analyses of geographic variation in PRT use were also performed for the time period 2012-2016.
RESULTS: PRT2Y for all cancer sites combined was 29.6% with wide geographic variations (standardized inter-county range; 21.8â€“36.6%). Female gender, increasing age at death, certain cancer sites, short survival time, and previous receipt of curative radiotherapy were associated with decreased odds of receiving PRT. Patients with low education, those living in certain counties, or with travel distances 100â€“499 km, were also less likely to receive PRT. Patients with low household income (adjusted odds ratio (OR) = 0.63; 95% confidence interval (CI) = 0.56â€“0.72) and those diagnosed in hospitals without radiotherapy facility (OR = 0.70; 95% CI = 0.64â€“0.77) had especially low likelihood of receiving PRT. Significant inter-county variation in use of PRT remained during the time period 2012â€“2016.
CONCLUSIONS: Despite a publicly funded, universal healthcare system with equity as a stated health policy aim, utilization of PRT in Norway is significantly associated with factors such as household income and availability of radiotherapy facility at the diagnosing hospital. Even after adjustments for relevant factors, unexplained geographic variations in PRT utilization exist.
This article presents results from one of the first longitudinal studies exploring the effects of losing a close friend to traumatic death, focusing on complicated grief over time and how this is affected by avoidant behavior and rumination about the loss. The sample consists of 88 persons (76% women and 24% men, mean age = 21) who lost a close friend in the Utøya killings in Norway on July 22, 2011. Quantitative data were collected at three time-points; 18, 28, and 40 months postloss. Main findings are that bereaved friends are heavily impacted by the loss and their grief reactions are affected negatively by avoidant behavior and rumination. This indicates that close bereaved friends are a group to be aware of and that there is a need for better strategies for identifying individuals in need for follow-up.
Home-care nurses assist many advanced cancer patients desiring to live in the familiar surroundings of their own home until the day they die. The purpose of this study was to increase the understanding concerning home-care nurse experience with the Norwegian version of the medication kit as a tool in symptom management for the terminally ill. The study had a qualitative, descriptive, and explorative design, based on hermeneutic methodology. Two focus group interviews with 4 subsequent in-depth interviews helped generate data. The nurses reported how thorough planning and clear instructions on medication kit usage gave security and facilitated proper application. Good collaboration with primaryphysicians, including accessibility and clarifying meetings in particular, was necessary. In the past, infrequent use of the medication kit hindered its relevance for symptom management. Home-care nurses were often alone with the responsibility for assessing the patient and administering medications, leading to unjustifiable professional conditions, particularly during night shifts. Thus, clear guidelines, planning and clarifying meetings with primary physicians, helped to facilitate the use of the medication kit.
BACKGROUND: Knowledge about hospitalisations at the final stage of life is useful for understanding the need for hospital services.
MATERIAL AND METHOD: Registry information from Statistics Norway and the Norwegian Patient Registry was used to analyse the number of admissions to somatic hospitals during the final three years of life among people who died at the age of 56â€“95.
RESULTS: The sample in the analyses consisted of 35 954 individuals who had a total of 136 484 admissions during the observation period. Those who died at age 56â€“65 had 5.2 admissions on average, compared to 2.8 for those who died at age 86â€“95. Altogether 14.1 % had no admissions, while 13.3 % had eight or more. Those who died from malignant neoplasms had 5.6 admissions on average, compared to 4.2 if the cause of death was respiratory disease and 3.1 if the cause was circulatory disease.
INTERPRETATION: Intensive forms of treatment are assumed to have a lower likelihood of success in older patients. This might be one reason for the lower rate of hospitalisation at the final stage of life among patients in their 80s and 90s than among those who died in their 60s and 70s. Average age at death will rise as life expectancy rises, and the age variation in hospital admissions during the final years of life will thus have an impact on the need for admissions.
BACKGROUND: Dementia has become a major public health issue worldwide due to its rapidly increasing prevalence and an increasing number of dementia-related deaths in long-term care facilities. The aim of this study was to examine health professionals' experiences of potential barriers and facilitators in providing palliative care for people with severe dementia in long-term care facilities.
METHODS: This was a qualitative descriptive study. The data were collected from four focus groups and 20 individual in-depth interviews with healthcare professionals from four Norwegian nursing homes. The data were analysed by thematic text analysis, as described by Braun and Clarke.
RESULTS: The major findings indicate that healthcare professionals experience a lack of continuity as the main barrier to facilitating palliative care. Time pressure and increased efficiency requirements especially affect the weakest and bedridden residents with dementia. The healthcare professionals feel conflicted between wanting to spend more time caring for each individual resident and feeling pressure to help everyone. Although resources are scarce, dying residents are always given priority by healthcare professionals, either by the hiring of extra personnel or the reorganization of tasks in a way that facilitates someone staying with the terminal resident. Advanced care planning was highlighted as a facilitator in providing palliative care, but the extensive use of temporary staff among nurses and doctors and the relocation between the sheltered and long-term wards threaten the continuity in planning and providing palliative care.
CONCLUSIONS: The findings indicate that healthcare professionals experienced several structural barriers that prevented the provision of palliative care to people with severe dementia in long-term care facilities. Increasing demands for economic rationality lead to a lack of continuity of care. Organizational changes, such as measures to increase the competence and the proportion of permanent employees and the prevention of burdensome end-of-life transitions, should be implemented to improve continuity and quality of care.
BACKGROUND: Norway has one of the lowest home death rates in Europe. However, it is the health authorities´ ambition to increase this by facilitating palliative care at home. The aim of this study was to achieve more insight, through home care nurses and general practitioners, of conditions that facilitate or hamper more time at home and more home deaths for patients with terminal disease and short life expectancy.
METHODS: We used a qualitative research design with four focus groups with a total of 19 participants, of either home care nurses or general practitioners, using semi-structured question guides. The data were processed by systematic text condensation and encompassed thematic analysis of meaning and content of data across cases, which included four steps of analysis.
RESULTS: Three main themes were identified: 1) The importance of a good start for the patient and family with five sub-themes, 2) 'Passing the baton' - the importance of collaboration across the health system with four sub-themes, and 3) Avoiding new hospitalization by establishing collaboration and competence within primary health care with four sub-themes.
CONCLUSIONS: This study demonstrates that optimum palliative care at home depends on close collaboration and dialogue between the patient, family, home care nurses and general practitioner. It suggests the need for safer discharge routines and planning when hospitals transfer patients with terminal disease to their homes. A good start for the patient and family, where the initial interdisciplinary collaboration meeting takes place in the patient's home, is crucial for a good result. The general practitioners' perception of their 'disconnection' during hospitalization and prior to discharge has the potential to reduce patient safety. The family seems to be fundamental in gaining more time at home for the patient and supporting the patient to eventually die at home. Home-based palliative care demands experience and competence as well as regular supportive mentoring.
Aim: The aim of this study was to explore any differences between nurses working in nursing home and home-based care in their experiences regarding relatives' ability to accept the imminence of death and relatives' ability to reach agreement when deciding on behalf of patients unable to consent.
Design: An electronic questionnaire-based cross-sectional study.
Method: An electronically distributed survey to 884 nurses in long-term care in Norway in May 2014. A total of 399 nurses responded (45%), of which 197 worked in nursing homes and 202 in home-based care.
Results: Nurses in home-based care, more often than their colleagues in nursing homes, experienced that relatives had difficulties in accepting that patients were dying. Nurses who often felt insecure about whether life extension was in consistency with patients' wishes and nurses who talked most about life-prolonging medical treatment in communication with relatives more often experienced that relatives being reluctant to accept a poor prognosis and disagreements between relatives in their role as proxy decision makers for the patient.
BACKGROUND: Close to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies.
METHODS/DESIGN: This study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or "clusters" were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group.
DISCUSSION: This project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.
Advance care planning (ACP) is a communication process for mapping a patient's wishes and priorities for end-of-life care. In preparation for the introduction of ACP in Norway, we wanted to explore the views of Norwegian pulmonary patients on ACP. We conducted four focus group interviews in a Norwegian teaching hospital, with a sample of 13 patients suffering from chronic obstructive pulmonary disease, lung cancer or lung fibrosis. Analysis was by systematic text condensation. Participants' primary need facing end-of-life communication was "the comforting safety", implying support, information and transparency, with four underlying themes: 1) provide good team players; 2) offer conversations with basic information; 3) seize the turning point; and 4) balance transparency. Good team players were skilled communicators knowledgeable about treatment and the last phase of life. Patients preferred dialogues at the time of diagnosis and at different "turning points" in the disease trajectory and being asked carefully about their needs for communication and planning. Transparency was important, but difficult to balance. ACP for patients with life-threatening pulmonary disease should rest upon an established patient-doctor/nurse relationship and awareness of turning points in the patient's disease progression. Individually requested and tailored information can support and empower patients and their relatives.
BACKGROUND: There is little research on number of planned home deaths. We need information about factors associated with home deaths, but also differences between planned and unplanned home deaths to improve end-of-life-care at home and make home deaths a feasible alternative. Our aim was to investigate factors associated with home deaths, estimate number of potentially planned home deaths, and differences in individual characteristics between people with and without a potentially planned home death.
METHODS: A cross-sectional study of all decedents in Norway in 2012 and 2013, using data from the Norwegian Cause of Death Registry and National registry for statistics on municipal health and care services. We defined planned home death by an indirect algorithm-based method using domiciliary care and diagnosis. We used logistic regressions models to evaluate factors associated with home death compared with nursing home and hospital; and to compare unplanned home deaths and potentially planned home deaths.
RESULTS: Among 80,908 deaths, 12,156 (15.0%) were home deaths. A home death was most frequent in 'Circulatory diseases' and 'Cancer', and associated with male sex, younger age, receiving domiciliary care and living alone. Only 2.3% of home deaths were from 'Dementia'. In total, 41.9% of home deaths and 6.3% of all deaths were potentially planned home deaths. Potentially planned home deaths were associated with higher age, but declined in ages above 80 years for people who had municipal care. Living together with someone was associated with more potentially planned home deaths for people with municipal care.
CONCLUSION: There are few home deaths in Norway. Our estimations indicate that even fewer people than anticipated have a potentially planned home death.
Background: Surveys suggest that most people prefer to die at home. Trends in causes of mortality and age composition could limit the feasibility of home deaths.
Aim: To examine the effect of changes in decedents’ age, gender and cause of death on the pattern of place of death using data on all deaths in Norway for the period 1987–2011.
Design: Population-based observation study comparing raw, predicted, as well as standardised shares of place of death isolating the effect of demographic and epidemiological changes. The analysis was bolstered with joinpoint regression to detect shifts in trends in standardised shares.
Setting/participants: All deaths (1,091,303) in Norway 1987–2011 by age, gender and cause of death. Place of death at home, hospital, nursing home and other.
Results: Fewer people died in hospitals (34.1% vs 46.2%) or at home (14.2% vs 18.3%), and more in nursing homes (45.5% vs 29.5%) in 2011 than in 1987. Much of the trend can be explained by demographic and epidemiological changes. Ageing of the population and the epidemiological shift represented by the declining share of deaths from circulatory diseases (31.4% vs 48.4%) compared to the increase in deaths from neoplasms (26.9% vs 21.8%) and mental/behavioural diseases (4.4% vs 1.2%) are the strongest drivers in the shift in place of death. Joinpoint regression shows important differences between categories.
BACKGROUND: Generalists such as general practitioners and district nurses have been the main actors in community palliative care in Norway. Specialised oncology nurses with postgraduate palliative training are increasingly becoming involved. There is little research on their contribution. This study explores how general practitioners (GPs) and oncology nurses (ONs) experience their collaboration in primary palliative care.
METHODS: A qualitative focus group and interview study in rural Northern Norway, involving 52 health professionals. Five uni-professional focus group discussions were followed by five interprofessional discussions and six individual interviews. Transcripts were analysed thematically.
RESULTS: The ideal cooperation between GPs and ONs was as a "meeting of experts" with complementary competencies. GPs drew on their generalist backgrounds, including their often long-term relationship with and knowledge of the patient. The ONs contributed longitudinal clinical observations and used their specialised knowledge to make treatment suggestions. While ONs were often experienced and many had developed a form of pattern recognition, they needed GPs' competencies for complex clinical judgements. However, ONs sometimes lacked timely advice from GPs, and could feel left alone with sick patients. To avoid this, some ONs bypassed GPs and contacted palliative specialists directly. While traditional professional hierarchies were not a barrier, we found that organization, funding and remuneration were significant barriers to cooperation. GPs often did not have time to meet with ONs to discuss shared patients. We also found that ONs and GPs had different strategies for learning. While ONs belonged to a networking nursing collective aiming for continuous quality improvement, GPs learned mostly from their individual experience of caring for patients.
CONCLUSIONS: The complementary competences and autonomous roles of a specialised nurse and a general practitioner represented a good match for primary palliative care. When planning high-quality teamwork in primary care, organizational barriers to cooperation and different cultures for learning need consideration.
BACKGROUND: People dying with dementia have significant healthcare needs, and palliative care, with its focus on comfort and quality of life, should be made available to these patients. The aim of this study was to explore and increase knowledge of healthcare professionals' experiences with palliative care to people with severe dementia in nursing homes.
METHODS: To describe the phenomenon under investigation, we used a phenomenological research approach grounded in the philosophy of Husserl. Data were collected using in-depth interviews with 20 healthcare professionals from four Norwegian nursing homes.
RESULTS: The general meaning structure of the healthcare professionals' experiences with providing palliative care to people with severe dementia is painfulness, due to their limited understanding of patients' individual modes of expression. The painfulness is illustrated by the following themes: challenges related to "reading" the patients' suffering, coming up short despite occasional success, handing the patients over to strangers, and disagreeing on the patients' best interests. The healthcare professionals struggled to understand patients by "reading" their suffering. Occasionally, they succeeded and were able to calm the patients, but they often had the feeling of coming up short in situations related to pain relief and coping with behavioural symptoms, such as aggression and rejection of care. They also found it painful when the weakest patients were moved from the sheltered unit to a somatic long-term unit and were handed over to strangers who did not know the patients' ways of expression. Although the healthcare professionals emphasized the importance of good collaboration with the patients' relatives to ensure the best possible palliative care, they frequently found themselves in difficult situations when they disagreed with the family on the patients' best interests.
CONCLUSIONS: We found healthcare professionals' experiences of providing palliative care to people with severe dementia to be painful. To be able to understand the patients better, long-term familiarity and knowledge of how to "read" and observe patients with severe dementia are necessary. Openness in cooperation with the patients' relatives and with the professional team may increase healthcare professionals' understanding of the patients' situations and hence improve the quality of care.
Chemotherapy, radiotherapy, hormone therapy and immune therapy have made many cancers chronic, potential curable diseases rather than inevitably fatal, but the treatments are often both mentally and physically stressful even if the side effects varies. The right use of palliative chemotherapy is a complex issue and there are many aspects to take into consideration. The aim of the study was to gain insight into the illness narratives of cancer patients, from the day they suspected that something was wrong up to the present day where they are living with incurable cancer, undergoing life-prolonging chemotherapy. Thirteen narrators were included. They were all cancer patients on chemotherapy with the intention of prolonging life (informed by their oncologist) in an outpatient's clinic in Norway. Narrative analyse of their illness stories was applied. The main findings showed that the narrators considered their lives worth living in spite of the treatment. They seemed to take control and build a new life on "what was left after the storm," and described how they found meaning living in the tension between life and death.
Little is known about experiences with receiving home nursing care when old, living in a rural area, and suffering from end-stage cancer. The aim of this study was thus to investigate bereaved family members' perceptions of suffering by their older relatives when receiving palliative home nursing care. Qualitative semi-structured interviews were conducted with 10 family members, in Norway during autumn 2015, and directed content analysis guided by Katie Eriksson's theoretical framework on human suffering was performed upon the data. The two main categories identified reflected expressions of both suffering and well-being. Expressions of suffering were related to illness, to care and to life and supported the theory. Expressions of well-being were related to other people (e.g. familiar people and nurses), to home and to activity. The results indicate a need to review and possibly expand the perspective of what should motivate care. Nursing and palliative care that become purely disease and symptom-focused may end up with giving up and divert the attention to social and cultural factors that may contribute to well-being when cure is not the goal.
It is known that if one partner wants to talk after the loss of a child, while the other does not, the less satisfied they are with the relationship. The aim of this study was to increase our understanding of parental relationships following the loss of a child. A questionnaire on various aspects of the relationship was sent to 1,027 members of bereavement support organizations for parents who have lost children in Norway. The studied sample (N = 285) consisted of 169 women (59.3%) and 116 men (40.7%), representing 175 couples. Although the participants were generally satisfied with their relationship and felt that it was strengthened, there were challenges of communication and interaction. The loss made the relationship special, and they felt they had learned to know each other on a deeper level. The importance of talking together and communicating thoughts and feelings was emphasized by the parents. Women initiated talk more often and evidenced a greater need to talk. A deterioration of the relationship tended to be related to a lack of understanding, communication, and care. Communication, respect, and understanding were underlined as core factors for perceiving a relationship as positive.
Previous research has revealed an association between parental bereavement from external causes and risk of suicide in offspring. Few studies have however provided insights into specific influences of cause of death, gender of the deceased and bereaved, age at bereavement and suicide, and time since bereavement. The present nested case-control study was based on data from three longitudinal registers. Subjects comprised 19 015 persons who died from suicide at an age of 11–64 years during 1969–2012 (cases), and 332 046 live comparison individuals matched for gender and date of birth. Information about deceased parents’ cause and date of death, and sociodemographic data was retrieved and merged. Data were analysed with conditional logistic regression. Losing a parent to suicide, transport accidents and other external causes of death was associated with an increased suicide risk in offspring. Parental suicide was associated with a substantially higher suicide risk than transport accidents and other external causes. These effects were equally strong for daughters and sons, and for the loss of a mother, father or both parents. Suicide risk was highest in younger bereaved offspring, and bereavement had both short and long-term impacts on suicide risk. In conclusion, all offspring exposed to parental death by external causes have an increased suicide risk, independent of factors related to the exposure. The consequences are long lasting, and offspring should be offered follow-up in primary healthcare. Younger offspring bereaved by parental suicide have the highest risk and may be targeted for prevention and intervention programs in specialist healthcare.
BACKGROUND: Parentally bereaved offspring have an increased suicide risk as a group, but the ability to identify specific individuals at risk on the basis of risk and protective factors is limited. The present study aimed to investigate to what degree different risk factors influence suicide risk in offspring bereaved by parental death from external causes. METHODS: Based on Norwegian registers, individual-level data were retrieved for 375 parentally bereaved suicide cases and 7500 parentally bereaved gender- and age-matched living controls. Data were analysed with conditional logistic regression. RESULTS: Bereaved offspring with low social support, indicated by offspring's single status and repeated changes in marital status and residence, had a significantly increased suicide risk compared to bereaved offspring with high social support. Moreover, low socioeconomic status, having an immigration background, having lost both parents and loss due to suicide significantly increased suicide risk. LIMITATIONS: Several variables relevant to bereavement outcome, such as coping mechanisms and the quality of the parent-offspring relationship are impossible to examine by utilizing population registers. Moreover, the availability of data did not enable the measurement of marital stability and residence stability across the entire lifespan for older individuals. CONCLUSIONS: Healthcare professionals should be aware of the additional risk posed by the identified risk factors and incorporate this knowledge into existing practice and risk assessment in order to identify individuals at risk and effectively target bereaved family and friends for prevention and intervention programs. Ideal follow-up for bereaved families should include a specific focus on mobilizing social support.