AimsTo describe assistant nurses experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units.DesignA qualitative, reflexive thematic design with an inductive analysis was used.MethodsData were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR).ResultsTwo main themes were found in this study. (1) A world of practice for thirst relief where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals.ConclusionThirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patients record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.Patient or Public ContributionNo patient or public contribution.ImpactIn palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patients fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life.Reporting MethodThe study was guided by the SRQR.What does this Article Contribute to the Wider Global Clinical Community?Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.

BackgroundThirst and dry mouth are common symptoms in terminally ill patients. In their day-to-day practice, palliative care physicians regularly encounter ethical dilemmas, especially regarding artificial hydration. Few studies have focused on thirst and the ethical dilemmas palliative care physicians encounter in relation to this, leading to a knowledge gap in this area.AimThe aim of this study was to explore palliative care physicians experiences of ethical challenges in relation to thirst in terminally ill patients.MethodsA qualitative interview study with an inductive approach was conducted. Sixteen physicians working in four different specialised palliative care units and one geriatric care unit in different hospitals in Sweden were interviewed. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.ResultsWhen presented with an ethical challenge relating to thirst, physicians attempted to balance benefits and harms while emphasizing respect for the patients autonomy. The ethical challenges in this study were: Starting, continuing or discontinuing drips; lack of evidence and traditions create doubt; and lack of interest and time may result in patient suffering.ConclusionsAll physicians in this study reported that "Starting, continuing or discontinuing drips" was the main ethical challenge they encountered, where some were so accustomed to the decision that they had a standard answer ready to offer patients and families. Physicians reported that drips were a symbol of thirst quenching, life and survival but were not necessary in end-of-life care. Others questioned the traditions regarding thirst and emphasised drips in particular.

ObjectivesUp to 10% of bereaved individuals can develop prolonged grief disorder. Several risk factors for prolonged grief symptom severity in family members have been identified, but there is a lack of knowledge regarding the multivariable effects between family members coping with loss and patient-related factors for prolonged grief symptom severity during bereavement. The aim was to identify risk factors for prolonged grief symptom severity in family members 1 year after patient death in relation to (1) the family member and the patient during ongoing palliative care and (2) the family member during bereavement. MethodsThe participants consisted of family members (n = 99) of patients admitted to palliative home care in Sweden. The participants completed a survey during ongoing palliative care and at a follow-up 1 year after the patients death. ResultsThe model selection chose 4 demographic and 4 preloss variables: family members nervousness and stress, the patients sense of security during palliative care, family members sense of security during palliative care, and a family member attachment security anxiety dimension. Two postloss variables were positively associated with prolonged grief symptom severity: family members continuing bond - internalized and continuing bond - externalized. Significance of resultsHow family members coped depended on (i) variables linked to the family members themselves, (ii) the relationship to the patient, and (iii) some patient-specific variables. There was also a link between preloss variables and postloss prolonged grief symptom severity. Hence, it should be possible to identify family members with a heightened risk for longer-term prolonged grief symptoms.

IntroductionThirst and dry mouth are common symptoms among patients at the end of life. In palliative care today, there is a focus on mouth care to alleviate thirst. There are no qualitative studies on thirst from a physicians experience, which is why this study is needed. PurposeThis study aimed to explore palliative care physicians experiences and views of thirst in patients at the end of life. MethodsA qualitative interview study with an inductive approach was carried out. Sixteen physicians working in specialised palliative care units in Sweden were included. The interviews were analysed with a reflexive thematic analysis. ResultsThe analysis resulted in three basic assumptions regarding thirst: It is dry mouth, not thirst; patients are dry in their mouth and thirsty; and, I do not know if they are thirsty. Further, four different themes regarding how to relieve thirst appeared: drips will not help thirst but cause harm; the body takes care of thirst itself; drips might help thirst; and, mouth care to relieve thirst or dry mouth. ConclusionsThe palliative care physicians had different experiences regarding thirst, from thirst never arising, to a lack of awareness. They thought good mouth care worked well to alleviate the feeling of thirst and dry mouth. Most physicians did not want to give patients drips, while some did. This study indicates that there are many unanswered questions when it comes to thirst at end-of-life and that further research is needed.

Background: Interpretation laboratory analyses are crucial when assessing the patient’s condition. Reference intervals from apparently healthy and disease-free individuals may cause problems when outcomes from elderly patients with chronic diseases and on medications are being interpreted. Elderly individuals are a heterogeneous group ranging from individuals managing their daily life independently to individuals with diseases and impairment, in need of nursing care around the clock, that is, frail; a term widely used although there is no consensus on the definition.

Aims and Objectives: The aim of the study was to study the effect of classification of elderly into healthy, moderately healthy, and frail, based on activities of daily living (ADL) and Mini-Mental State Examination (MMSE) or frailty index (FI), on the interpretation of outcomes regarding: Albumin, alanine aminotransferase (ALT), aspartate aminotransferase (AST), creatinine, and gamma-glutamyltransferase (γ-GT) levels.

Materials and Methods: Individuals ≥80 years (n=568) were classified either on ADL and MMSE or number of deficits, (FI).

Results: Individuals classified as frail based on FI had lower mean levels for ALT, creatinine and γ-GT than individuals classified based on ADL and MMSE (P<0.05).

Conclusion: The model to define health status to some extent affected laboratory analyte levels in ≥80 years old, classified as healthy, moderately healthy, and frail based on ADL and MMSE versus FI.

Objective Studies on advance care planning in nursing homes are rare, and despite their demonstrated favourable effects on end-of-life care, advance care plans are often lacking. Therefore, we wished to explore: (i) the prevalence of advance care plans in a Swedish nursing home setting using two different definitions, (ii) the content of advance care plans, (iii) adherence to the content of care plans and (iv) possible associations between the presence of advance care planning and background characteristics, physician attendance and end-of-life care. Design Retrospective chart review. Setting Twenty-two nursing homes in Sweden. Subjects A total of 367 deceased patients (included between 1 June 2018 and 23 May 2020) who had lived in nursing homes. Main outcome measures Electronic health record data on the prevalence of advance care plans with two different definitions and variables regarding background characteristics, physician attendance and end-of-life care, were collected. Results Of the study population, 97% had a limited care plan (ACP I) documented. When using the comprehensive definition (ACP II), also including patients preferences and involvement of family members in advance care planning, the prevalence was 77%. Patients with dementia more often had care plans, and a higher physician attendance was associated with presence of advance care plans. Prescription of palliative drugs and information to family members of the patients deterioration and impending death were more common in patients with care plans compared to those where such plans were missing. There was adherence to the care plan content. Conclusion In contrast to previous research, this study showed a high prevalence of advance care plans in nursing home patients. Patients with care plans more frequently received prescriptions of palliative drugs and their family members were informed to a greater extent about the patients deterioration and impending death compared to those without care plans. These aspects are often seen as vital components of good palliative care.

Background Acute care and palliative care (PC) are described as different incompatible organisational care cultures. Few studies have observed the actual meeting between these two cultures. In this paper we report part of ethnographic results from an intervention study where a palliative care consultation team (PCCT) used an integrative bedside education approach, trying to embed PC principles and interventions into daily practice in acute wards. Purpose To study the meeting and interaction of two different care cultures, palliative care and curative acute wards, when a PCCT introduces consulting services to acute wards regarding end-of-life palliative care, focusing on the differences between the cultures. Methods An ethnographic study design was used, including observations, interviews and diary entries. A PCCT visited acute care wards during 1 year. The analysis was inspired by Spradleys ethnography. Results Three themes were found: 1) Anticipations meets reality; 2) Valuation of time and prioritising; and 3) The content and creation of palliative care. Conclusion There are many differences in values, and the way PC are provided in the acute care wards compared to what a PCCT expects. The didactic challenges are many and the PC require effort.

Objectives To examine similarities and dissimilarities in patient and family caregiver dyads in their experience of stress, support, and sense of security. Methods 144 patients and their family caregivers participated. Patients were admitted to six Swedish specialist palliative home care units and diagnosed with a non-curable disease with an expected short survival. We analysed similarity patterns of answers within dyads (correlations) as well as dissimilarities, expressed as the difference between within-dyad responses. The latter were subjected to a model-building procedure using GLM, with 13 sociodemographic and clinical characteristics as independent variables. Results Within dyads, patients and family caregivers scored similar in their perception of support and sense of security with care. There was also dissimilarity within dyad responses in their perception of stress and support that could be attributed to sociodemographic or clinical characteristics. When patients scored higher levels of stress than family caregivers, the family caregiver was more likely to be male. Also family caregiver attachment style (attachment anxiety), patient age and the relationship of the family caregiver to the patient explained dissimilarities within the dyads. Conclusions Patients and family caregivers within the dyads often, but not always, had similar scores. We suggest that it is important that the healthcare staff identify situations in which perceptions within the dyads regarding stress and perception of support differ, such that they can recognise patients and family caregivers unique needs in different situations, to be able to provide adequate support and facilitate dyadic coping.

Objective To explore family members experiences of advance care planning in nursing homes. Design Individual interviews. Thematic analysis. Setting Four nursing homes in Sweden. Subjects Eighteen family members of deceased nursing home patients. Main outcome measures Family members experiences of advance care planning in nursing homes. Results Family members experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patients preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patients wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physicians absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions. Conclusion Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patients wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning.

Background This study aimed to identify factors associated with health-related quality of life (HRQoL) and the burden on the relatives of older people with multi-morbidity. Methods A secondary analysis of baseline data from 296 dyads, including older patients with multimorbidity and their relatives, which were previously collected in a randomized study. The analysis was conducted to select correlated independent variables to enter a final linear regression analysis of two models with different endpoints: the relatives HRQoL (EQ5D index) and burden (COPE index: Negative impact scale). Results Sixteen variables correlated with the relatives HRQoL, and 15 with the relatives burden. Both the HRQoL and burden correlated with both patient and relative variables. A high HRQoL was associated with relatives working/studying. A high burden was associated with caring for an older person with changed behaviour. A low burden was associated with the relatives high scores on positive values of caring, quality of support and HRQoL. Conclusion Older persons and their relatives should be considered as a unit in the development of support of older people in order to increase the health and quality of life of both groups. To support and protect relatives from a high burden, potential measures could include improving the relatives HRQoL and strengthening their ability to find positive values in care and strengthening reliable and good support from others. The relatives HRQoL explained the variation in the burden. However, the burden did not explain the variation in the HRQoL, which suggests that the relatives HRQoL is not so readily affected by their burden, whereas the relatives HRQoL can influence their burden. The variables used in the regression analyses where chosen to reflect important aspects of the relatives and older persons situations. The final models explained 38% of the variation in the relatives burden but only 10% of the variation in their HRQoL. This could be important to consider when choosing outcome assessments in future studies.

Background The aim of this study was to optimize a Question Prompt List which is designed to improve communication about the heart failure trajectory among patients, family members, and health care professionals. Methods Data were collected in a two-round Delphi survey and a cross-sectional survey, including patients with heart failure, their family members, and health care professionals working in heart failure care in Sweden and the Netherlands. Acceptability for and demand of the Question Prompt List were assessed. Results A total of 96 patients, 63 family members and 26 health care professionals participated in the study. Regarding acceptability, most of the original questions were found to be relevant by the participants for inclusion in the Question Prompt List but some cultural differences exist, which resulted in two versions of the list: a Swedish version including 33 questions and a Dutch version including 38 questions. Concerning demand, participants reported that they were interested in discussing the questions in the revised Question Prompt List with a physician or a nurse. Few patients and family members reported that they were worried by the questions in the Question Prompt List and hence did not want to discuss the questions. Conclusions This Question Prompt List has successfully been adapted into a Swedish version and a Dutch version and includes questions about the HF trajectory which patients, their families, and health care professionals perceived to be relevant for discussion in clinical practice. Overall, patients and family members were not worried about the content in the Question Prompt List and if used in accordance with patients and family members preferences, the Question Prompt List can help to improve communication about the heart failure trajectory.

Background Despite evidence that family members support to each other can be of importance to its members, there are limited studies of factors related to family members sense of such support during palliative care. Aim Based on the family systems approach, we evaluated which factors were associated with family members sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support. Design A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care. Methods Generalised linear models were used to evaluate individual factors related to family members sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses. Results Nineteen variables were identified that were significantly associated with the family members sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members. Conclusions Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.

BackgroundIt has been recognised that more evidence about important aspects of family members sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members sense of security during palliative care, and iii) to evaluate if family members sense of security during ongoing palliative care predicts well-being during bereavement.MethodsBetween September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patients death (70%). They answered a single question regarding the family members sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link).ResultsSixteen variables were positively related to family members sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members perceived quality of life. Moreover, the family members sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patients death, e.g. psychological well-being, complicated grief symptoms, health related quality of life.ConclusionsThe findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.

There are only few studies with specific focus on predictors of survival in nursing home residents (NHRs). The aim was to study whether 1-year changes in complete blood count (including hemoglobin, red blood cells, erythrocyte volume fraction, mean corpuscular volume, mean corpuscular hemoglobin concentration, white blood cells count and platelet count), C-reactive protein and interleukin-1 beta (IL-1 beta), IL-1Ra, IL-6, IL-8 and IL-10, are associated with 8-year survival in elderly NHRs, aged amp;gt;= 80 years. Complete blood count, C-reactive protein and interleukins were measured at baseline, after 6 and 12 months from 167 NHRs aged 80-101 years, mean age 88 +/- 4.5 years, 75% of whom were women. Dates of death were collected from the National Death Register 8 years after baseline. Levels of hemoglobin, red blood cells and mean corpuscular hemoglobin concentration were lower after 1-year, but higher for mean corpuscular volume and IL-1 beta, compared to baseline or 6 month follow-up. In the Cox regression model with a time-dependent covariate, raised levels of C-reactive protein and IL-8 were associated with reduced survival time. Elevated levels of C-reactive protein and IL-8 during 1-year follow-up were related to reduce lengths of survival in elderly NHRs.

BackgroundThe prevalence of multimorbidity is increasing worldwide, and older people with multimorbidity are frequent users of health care services. Since multimorbidity has a significant negative impact on Health-related Quality of Life (HrQoL) and is more common in older age it would be expected that factors related to HrQoL in this group might have been thoroughly researched, but this is not the case. Furthermore, it is important to look at old people living at home, considering the shift from residential to home-based care. Therefore, we aim to investigate factors that are related to HrQoL in older people with multimorbidity and high health care consumption, living at home.MethodsThis is a secondary analysis of a RCT study conducted in a municipality in south-eastern Sweden. The study had a longitudinal design with a two-year follow-up period assessing HrQoL, symptom burden, activities of daily living, physical activity and depression.ResultsIn total, 238 older people with multimorbidity and high health care consumption, living at home were included (mean age 82, 52% female). A multiple linear regression model including symptom burden, activities of daily living and depression as independent variables explained 64% of the HrQoL. Higher symptom burden, lower ability in activities of daily living and a higher degree of depression were negatively related to HrQoL. Depression at baseline and a change in symptom burden over a two-year period explained 28% of the change in HrQoL over a two-year period variability. A higher degree of depression at baseline and negative change in higher symptom burden were related to a decrease in HrQoL over a two-year period.ConclusionIn order to facilitate better delivery of appropriate health care to older people with high health care consumption living at home it is important to assess HrQoL, and HrQoL over time. Symptom burden, activities of daily living, depression and change in symptom burden over time are important indicators for HrQoL.Trial registrationClinicaltrials.gov identifier: NCT01446757, the trial was registered prospectively with the date of trial registration October 5(th), 2011.

Objectives: Both morbidity and mortality are elevated for individuals with subsyndromal depression (SSD) compared to non-depression (ND) in those of younger ages, but scientific studies are scarce for very old individuals. The aim of this study was therefore to compare the morbidity and mortality in very old individuals with SSD and ND. Design and setting: An 8-year prospective population-based study was undertaken on 85-year-old individuals in Sweden. Measurements: Data were collected from postal questionnaires and clinical assessments at baseline, after 1, 5, and 8 years. Depressive symptoms were measured with Geriatric Depression Scale and the results were classified into ND, SSD, and syndromal depression. Mortality was investigated using multivariable cox regressions, and variables of morbidity were investigated using linear mixed models. Results: Compared to ND, in people with SSD, mortality was elevated in the univariate regression, but this association vanished when controlling for relevant covariates. Morbidity was elevated with regard to basic activities of daily living (ADLs), instrumental ADLs, loneliness, self-perceived health, and depressive symptoms for individuals with SSD compared to ND, whereas cognitive speed, executive functions, and global cognitive function were not significantly impaired when adjusting for covariates. Conclusions: SSD among very old individuals is longitudinally associated with elevated morbidity but not mortality, when controlling for relevant covariates. Considering the high prevalence of SSD and the demographic development of increasing numbers of very old people, the findings highlight the need to develop clinical and societal strategies to prevent SSD and associated negative outcomes.

Objective: To investigate clinicians perspectives on the factors that shape the process of advance care planning in a nursing home context. Design: Interviews. Latent qualitative content analysis. Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes. Main outcome measures: Participants views on advance care planning (ACP) at nursing homes. Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patients readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patients preferences and staffs and family members views; Decision amp; documentation of the ACP, e.g. clear documentation in patients medical records that are up-to-date and available for staff caring for the patient, and Implementation amp; re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence - defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context.

Background: Reference intervals are widely used as decision tools, providing the physician with information about whether the analyte values indicate ongoing disease process. Reference intervals are generally based on individuals without diagnosed diseases or use of medication, which often excludes elderly. The aim of the study was to assess levels of albumin, alanine aminotransferase (ALT), aspartate aminotransferase (AST), creatinine and gamma-glutamyl transferase (gamma-GT) in frail, moderately healthy and healthy elderly indivuduals. Methods: Blood samples were collected from individuals amp;gt; 80 years old, nursing home residents, in the Elderly in Linkoping Screening Assessment and Nordic Reference Interval Project, a total of 569 individuals. They were divided into three cohorts: frail, moderately healthy and healthy, depending on cognitive and physical function. Albumin, ALT, AST, creatinine and gamma-GT were analyzed using routine methods. Results: Linear regression predicted factors for 34% of the variance in albumin were activities of daily living (ADL), gender, stroke and cancer. ADLs, gender and weight explained 15% of changes in ALT. For AST levels, ADLs, cancer and analgesics explained 5% of changes. Kidney disease, gender, Mini Mental State Examination (MMSE) and chronic obstructive pulmonary disease explained 25% of the variation in creatinine levels and MMSE explained three per cent of gamma-GT variation. Conclusions: Because a group of people are at the same age, they should not be assessed the same way. To interpret results of laboratory tests in elderly is a complex task, where reference intervals are one part, but far from the only one, to take into consideration.

Objectives

This study aimed to compare, over a 5-year period, the prospective direct healthcare costs and service utilization of persons with subsyndromal depression (SSD) and non-depressive persons (ND), in a population of very old persons. A second aim was to develop a model that predicts direct healthcare costs in very old persons with SSD.

Design and Setting

A prospective population-based study was undertaken on 85-year-old persons in Sweden.

Measurements

Depressiveness was screened with the Geriatric Depression Scale at baseline and at 1-year follow-up, and the results were classified into ND, SSD, and syndromal depression. Data on individual healthcare costs and service use from a 5-year period were derived from national database registers. Direct costs were compared between categories using Mann-Whitney U tests, and a prediction model was identified with linear regression.

Results

For persons with SSD, the direct healthcare costs per month of survival exceeded those of persons with ND by a ratio 1.45 (€634 versus €436), a difference that was significant even after controlling for somatic multimorbidity. The final regression model consisted of five independent variables predicting direct healthcare costs: male sex, activities of daily living functions, loneliness, presence of SSD, and somatic multimorbidity.

Conclusions

SSD among very old persons is associated with increased direct healthcare costs independently of somatic multimorbidity. The associations between SSD, somatic multimorbidity, and healthcare costs in the very old need to be analyzed further in order to better guide allocation of resources in health policy.

Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden. Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis. Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants views of a good death. Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients personal experience of death and dying can help address their fears as death approaches.

Purpose

Attachment theory is currently receiving much attention in relation to how adults cope with severe illness. The study aims were using the experiences of patients and family members to explore attachment figures (a central concept within the theory) during palliative home care.

Methods

Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed using qualitative content analysis.

Results

Four types of attachment figures were identified: (i) family and friends, (ii) health care practitioners, (iii) pets and (iv) God. Both non-physical and physical contact with the attachment figures facilitated a sense of security. In addition, the patient/family members and their attachment figures were described by some as a “we”, and when one part of the “we” felt insecure, this made the other also feel insecure. The patients’ unstable and progressing illnesses constituted a threat to the patients’ and family members’ sense of security. The availability of the attachment figures made them feel secure, and they could then divert their attention from the patients’ illnesses to other things in everyday life, e.g. socialising with family and friends. Some family members also had to cope with the loss of their own attachment figure, when the patient, who had previously been a source of security for them, was no longer able to offer protection and comfort due to the progression of the illness.

Conclusion

Important aspects of attachment figures in the end-of-life context were identified, and their clinical implications will be discussed.

Context: Between 7% and 30% of people with treated coeliac disease suffer from residual symptoms, and there is a knowledge gap about their own management of these symptoms. Aim: To explore experiences and management concerning residual symptoms despite a gluten-free diet in people with coeliac disease. Methods: A qualitative explorative design with semi-structured interviews with 22 adults with coeliac disease in Sweden. Data were analysed using qualitative content analysis. Results: The informants had, at diagnosis, thought that their symptoms would disappear if they followed a gluten free diet, but the disease was continuing to have a substantial impact on their lives, despite several years of treatment. They experienced cognitive, somatic as well as mental symptoms, including impact on personality (e.g. having a shorter fuse, being more miserable or tired). However, only a few informants had sought medical care for persistent symptoms. Instead they tried to manage these by themselves, e.g. abstaining from food during periods of more intense symptom, or using distraction. The management of persistent symptoms resembled thorough detective work. To prevent problems related to residual symptoms the informants used withdrawal of social contact as well as acceptance of their situation. Conclusion: People with treated coeliac disease may experience residual symptoms of both a physical and psychological nature, causing major negative impacts on their lives in different ways. In the light of this, healthcare staff should change their practices regarding the follow-up of these people, and in addition to medical care should provide guidance on management strategies to facilitate the daily life. Furthermore, information to newly diagnosed persons should make them aware of the possibility to experience continued symptoms, despite treatment. (C) 2017 Elsevier Inc. All rights reserved.

There is little evidence regarding primary healthcare team members perceptions concerning palliative care consultation team (PCCT) and palliative care (PC) issues on their own wards. This study aimed to study whether a PCCT can influence and change primary healthcare team members perceptions regarding the palliative care at the end of life they are providing to patients in their own acute wards. The intervention was a PCCT visiting surgical and internal medicine wards in 1 year. We used a quasi-experimental design with pre-post-testing, measuring at baseline, and after 1 years intervention. A questionnaire was answered by all primary healthcare team members in three acute wards. A total of 252 team members (pre-post-intervention n = 132/n = 120) participated in the study. Overall, 11 of the 12 statements scored significantly higher after the intervention than before. Responses varied significantly between different professions and depending on the number of dying patients cared for during the last month. The five with the highest Wald values were as follows: the presence of a break point dialogue with a patient, where the changed aim and focus of care was discussed; early detection of impending death; adequate symptom relief and psychological and existential issues. It is possible to change perceptions about end-of-life care in primary healthcare team members on acute wards. Palliative care consultation teams should be a natural part wherever dying patients are cared for.

CONTEXT:

For patients in palliative care, constipation is primarily a result of opioid treatment. Impacts from other factors related to constipation in palliative care are rarely studied.

OBJECTIVES:

The aim was to identify factors related to constipation in patients in palliative care, and then to compare these factors between patients with different types of constipation and patients without constipation.

METHODS:

Cross-sectional data on constipation was collected with a 26-item questionnaire from 485 patients in 38 specialist palliative care units in Sweden. Three different constipation groups were used; MC ONLY, PC ONLY, and MC & PC. Logistic regression analyses were used to calculate odds ratios.

RESULTS:

Patients with <3 defecations/week, MC ONLY, (n = 36) had higher odds of being hospitalized, bed-restricted, in need of personal assistance for toilet visits, and of having a poor fluid intake. Patients with the perception of being constipated, PC ONLY, (n = 93) had higher odds of having poor appetite, hemorrhoids, hard stool, more opioid treatment, less laxative treatment and of being more dissatisfied with constipation information. Patients with both <3 defecations/week and a perception of being constipated, MC & PC, (n = 78) had higher odds of having cancer- disease.

CONCLUSION:

There were several significant factors related to constipation with higher odds than opioid- treatment, for patients in palliative care, such as; hard stool, cancer diagnosis, dissatisfaction with information, low fluid intake, hemorrhoids, bed restriction, hospitalization, and need of personal assistance for toilet visits.

Aim: The aim was to compare 5-year survival in two included cohorts (from year 2000 and year 2007) of 249 nursing home residents (NHR) in this retrospective, comparative study. Methods: The cohorts were compared regarding chronic diseases, medication, physical/cognitive/nutritional status, body mass index, body temperature and 5-year mortality. Factors correlated with 5-year survival were determined using Cox regression analysis. Results: In average, cohort 2007 survived 31 +/- 16 months and cohort 2000, 38 +/- 13 months, p amp;lt; 0.001. Dementia, ageing and circulatory failure were more common as cause of death 2007, while stroke, chronic obstructive pulmonary disease (COPD) and pneumonia were less common, compared with 2000. NHR belonging to cohort 2007 were significantly older when admitted to nursing homes (NH), more dependent in activities of daily living (ADL), had dementia, stroke, autoimmune disease and treatment with antidepressants, while malnutrition and treatment with paracetamol were more common 2000. In 2000, medication with antidepressants, the presence of stroke and diabetes, irrespective of gender, and in women cardiovascular disease, two to threefold significantly increased survival, while autoimmune disease, influenza vaccination and dependency in ADL decreased survival. In 2007, maintaining BMI, irrespective of gender, and autoimmune disease and COPD in women significantly increased survival, while malnutrition, influenza vaccination, dependency in ADL and medication with sedatives/tranquillisers or paracetamol severely reduced survival. Conclusions: The present results indicate a trend that individuals are older and frailer when admitted to NH and that survival time after admission has been shortened. Hence, the need of daily support and care has increased, irrespective of housing. Also, predictors of survival, possible to influence, have changed.

Background

Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.

Objective

To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.

Design

This study is a retrospective, comparative registry study.

Methods

A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.

Results

Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.

Conclusions

The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.

Aims and Objectives

To explore the lived experiences of women with coeliac disease after attending a patient education programme, to gain a broader perspective of its influence.

Background

Adults, particularly women, with coeliac disease report suffering from poor well-being and reduced quality of life in terms of health. Patient education programmes might support and encourage them in the search for possible improvements in lifestyle and in their approach to the disease.

Design

A qualitative phenomenological study.

Methods

Personal narrative interviews with 14 women suffering from coeliac disease who had participated in an educational programme. Data analysis in accordance with Giorgi was performed.

Results

The essential structure of women's lived experiences following their participation in the patient education programme was found to be an interaction with others with the same disease, which left the women feeling individually strengthened. The interaction enabled the participants to acquire a broader view of their life with coeliac disease. As a result, this realigned their sense of self in relation to their own disease.

Conclusion

In coping with coeliac disease, it seems that women need interaction with others with the disease to experience togetherness within a group, get the opportunity to compare themselves with others and to exchange knowledge. The interaction appears to result in that women acquire an overview of life with the disease, develop a greater confidence and dare to try new things in life.

Relevance to clinical practice

When designing a patient education programme it seems important to consider the needs of persons to meet others with the same disease, and to ask them about their need for knowledge, rather than simply assuming that health care professionals know what they need.

Objective The academic debate on cross-cultural interaction within the context of end-of-life care takes for granted that this interaction is challenging. However, few empirical studies have actually focused on what health care professionals think about this interaction. This study aimed to explore health care professionals understandings of cross-cultural interaction during end-of-life care. Methods Sixty end-of-life care professionals were recruited from eleven care units in Sweden to take part in focus group interviews. These interviews were analyzed using qualitative content analysis. Results The health care professionals interviewed talked about cross-cultural interaction in end-oflife care as interaction that brings about uncertainty, stress and frustration even though they had limited experience of this type of interaction. The focus group discussions brought attention to four specific challenges that they expected to meet when they care for patients with migrant backgrounds since they took for granted that they would have an ethno-cultural background that is different to their own. These challenges had to do with communication barriers, `unusual emotional and pain expressions, the expectation that these patients families would be `different and the anticipation that these patients and their families lack knowledge. At the core of the challenges in question is the idea that cross-cultural interaction means meeting "the unknown". In addition, the end-of-life care professionals interviewed talked about patients whose backgrounds they did not share in homogenizing terms. It is against this backdrop that they worried about their ability to provide end-of-life care that is individualized enough to meet the needs of these patients. Conclusions The study suggests that end-of-life care professionals who regard cross-cultural interaction in this manner could face actual challenges when caring for patients whose backgrounds they regard as "the unknown" since they anticipate a variety of challenges and do not seem confident enough that they can provide good quality care when cross-cultural interaction is at stake.

Objective: To compare the effects of care based on comprehensive geriatric assessment (CGA) as a complement to usual care in an outpatient setting with those of usual care alone. The assessment was performed 36 months after study inclusion. Design: Randomized, controlled, assessor-blinded, single-center trial. Setting: A geriatric ambulatory unit in a municipality in the southeast of Sweden. Participants: Community-dwelling individuals aged &gt;= 75 years who had received inpatient hospital care 3 or more times in the past 12 months and had 3 or more concomitant medical diagnoses were eligible for study inclusion. Participants were randomized to the intervention group (IG) or control group (CG). Intervention: Participants in the IG received CGA-based care for 24 to 31 months at the geriatric ambulatory unit in addition to usual care. Outcome measures: Mortality, transfer to nursing home, days in hospital, and total costs of health and social care after 36 months. Results: Mean age (SD) of participants was 82.5 (4.9) years. Participants in the IG (n = 208) lived 69 days longer than did those in the CG (n = 174); 27.9% (n = 58) of participants in the IG and 38.5% (n = 67) in the CG died (hazard ratio 1.49, 95% confidence interval 1.05-2.12, P =.026). The mean number of inpatient days was lower in the IG (15.1 [SD 18.4]) than in the CG (21.0 [SD 25.0], P =.01). Mean overall costs during the 36-month period did not differ between the IG and CG (USD 71,905 [SD 85,560] and USD 65,626 [SD 66,338], P =.43). Conclusions: CGA-based care resulted in longer survival and fewer days in hospital, without significantly higher cost, at 3 years after baseline. These findings add to the evidence of CGAs superiority over usual care in outpatient settings. As CGA-based care leads to important positive outcomes, this method should be used more extensively in the treatment of older people to meet their needs. (c) 2016 AMDA - The Society for Post-Acute and Long-Term Care Medicine.

OBJECTIVE: To investigate factors associated with subsyndromal depression (SSD) in very old persons, and to develop a model for prediction of SSD among very old persons.

METHODS: A cross-sectional, population-based study was undertaken on 85-year-old persons in Sweden. Data were collected from a postal questionnaire, assessments in the participants' homes and at reception visits. Depressiveness was screened with GDS-15 (Geriatric Depression Scale), and the results were classified into three outcome categories: non-depression (ND), SSD and syndromal depression. Data were analysed with binary logistic, ordinal logistic and linear regression.

RESULTS: With univariate logistic regression 20 factors associated with SSD were identified in very old persons, and the four hypothesized domains-sociodemographic factors, declining physical functioning, neuropsychiatric factors and existential factors-significantly related to SSD. The multivariate logistic model included seven independent factors that increase the likelihood of SSD instead of ND (lower self-perceived health, life not meaningful, problems with self-care, use of tranquilizing medication, no contact with neighbours, history of affective disorder and history of stroke). The ordinal logistic and the linear regression models resulted in seven partly different factors for predicting SSD and depressiveness, in the very old.

CONCLUSIONS: The identified markers may help clinicians with the detection, prevention and treatment of SSD in very old persons. The findings indicate the importance of a comprehensive functional approach to diagnosing and treating depressiveness in this population, and the findings might be interpreted as offering support for the coexistence of a dimensional and a categorical view on depressive disorders.

Research on how end-of-life care providers make sense of cultural, ethnic and religious diversity is relatively scarce. This article explores end-of-life care providers’ understandings of patients with migrant backgrounds through a study based on focus group interviews. The analysis brings to the fore three themes: the expectation that the existence of difference and uncertainty is a given when caring for patients with migrant backgrounds; the expectation that the extension of responsibility that difference entails creates a variety of dilemmas; and the expectation that difference will bring about misunderstandings and that patients’ needs can go unmet as a result of this. On the basis of these themes we suggest that the end-of-life care providers interviewed regard patients with migrant backgrounds as ‘Others’ and themselves as providers that cannot deliver so called culture-competent care. The findings are problematised using the lens that the debate on patient-centredness offers. The article suggests that if the uniqueness of all patients is to be seriously taken into account then ‘Othering’ is perhaps what patient-centredness actually entails.

Context: The prevalence of constipation among patients in palliative care has varied in prior research, from 18-90 %, depending on different study factors.

Objectives: The aim of this study was to describe and explore the prevalence and symptom distress of constipation, using different definitions of constipation, in patients admitted to specialized palliative care settings.

Methods: Data was collected in a cross-sectional survey from 485 patients in 38 palliative care units in Sweden. Variables were analyzed using logistic regression and summarized as odds ratio (OR).

Result: The prevalence of constipation varied between 7 – 43 %, depending on the definition used. Two constipation- groups were found: (i) Medical constipation- group (MCG; ≤ 3 defecations/week n=114; 23%); (ii) Perceived constipation- group (PCG; Patients with a perception of being constipated the last two weeks; n= 171; 35%). Three sub-groups emerged: patients with (a) only medical constipation (7 %), (b) only perceived constipation (19 %), and (c) with both medical and perceived constipation (16%). There were no differences in symptom severity between groups; 71% of all constipated patients had severe constipation.

Conclusion: The prevalence of constipation may differ, depending on the definition used and how constipation is assessed. In this study we found two main groups and three sub-groups, analyzed from the definitions of frequency of bowel movements and experience of being constipated. To be able to identify constipation, the patients’ definition has to be further explored and assessed.

OBJECTIVES: To examine costs and effects of care based on comprehensive geriatric assessment (CGA) provided by an ambulatory geriatric care unit (AGU) in addition to usual care.

DESIGN: Assessor-blinded, single-center randomized controlled trial.

SETTING: AGU in an acute hospital in southeastern Sweden.

PARTICIPANTS: Community-dwelling individuals aged 75 years or older who had received inpatient hospital care 3 or more times in the past 12 months and had 3 or more concomitant medical diagnoses were eligible for study inclusion and randomized to the intervention group (IG; n = 208) or control group (CG; n = 174). Mean age (SD) was 82.5 (4.9) years.

INTERVENTION: Participants in the IG received CGA-based care at the AGU in addition to usual care.

OUTCOME MEASURES: The primary outcome was number of hospitalizations. Secondary outcomes were days in hospital and nursing home, mortality, cost of public health and social care, participant' sense of security in care, and health-related quality of life (HRQoL).

RESULTS: Baseline characteristics did not differ between groups. The number of hospitalizations did not differ between the IG (2.1) and CG (2.4), but the number of inpatient days was lower in the IG (11.1 vs 15.2; P = .035). The IG showed trends of reduced mortality (hazard ratio 1.51; 95% confidence interval [CI] 0.988-2.310; P = .057) and an increased sense of security in care interaction. No difference in HRQoL was observed. Costs for the IG and CG were 33,371£ (39,947£) and 30,490£ (31,568£; P = .432).

CONCLUSIONS AND RELEVANCE: This study of CGA-based care was performed in an ambulatory care setting, in contrast to the greater part of studies of the effects of CGA, which have been conducted in hospital settings. This study confirms the superiority of this type of care to elderly people in terms of days in hospital and sense of security in care interaction and that a shift to more accessible care for older people with multimorbidity is possible without increasing costs. This study can aid the planning of future interventions for older people.

TRIAL REGISTRATION: clinicaltrials.gov identifier: NCT01446757.

Purpose of the Study: The aim of this study was to make a qualitative comparison of experiences of being in very old people with subsyndromal depression (SSD), in relation to the experiences of very old people with syndromal depression or nondepression. Through investigation and deeper understanding of the interface between depressive disease and normal aging, clinicians might give more accurate prevention or treatment to those very old persons who need such help.

DESIGN AND METHODS: Semistructured qualitative interviews were conducted for 27 individuals of 87-88 years of age, who were categorized in the 3 strata of nondepressive, SSD, and syndromal depression. Transcripts were analyzed using qualitative content analysis within each stratum and later with a comparison between the strata.

RESULTS: The content analysis resulted in 4 themes in people with SSD, as defined by a self-report depression screening instrument, giving a comprehensive picture of SSD in very old people, and also showed qualitative differences between the SSD, syndromal depression, and nondepressive groups. A main finding was that SSD differs qualitatively from syndromal depression but not clearly from nondepression.

IMPLICATIONS: The results might indicate that SSD in very old people is not related to pathology but to normal aging, even though the condition correlates with negative health parameters. Overlooking certain psychosocial aspects of living in the very old may pose a risk of both underdiagnosis and overdiagnosis in the spectrum of depressive disorders.

Background: Signs and symptoms of infection in frail elderly are atypical, causing delay in diagnosis and treatment. To improve communication between healthcare staff of signs and symptoms of infection we developed an instrument, using qualitative data from observations by nursing assistants when they suspected infection. The aim of this study was to assess the validity of nursing assistants observations by developing and testing the instrument for early detection of infection in elderly nursing home residents. Methods: The early detection of infection (EDIS) instrument was based on data from focus interviews with nursing assistants. Over one year the nursing assistants used EDIS to document episodes of suspected early signs and symptoms of infection in 204 nursing home residents. Two physicians classified documented episodes as "no infection", "possible infection", and "infection". The content validity of the 13 items of the EDIS was established to explore the relationships between the items. The construct validity was used to explore the relationship between the items and the presence or absence of infection. The predictive value of the developed model was evaluated by the percentage of correct classifications of the observed cases. Generalized linear model (ordinal multinomial distribution and logit link) was used. Results: Of the 388 events of suspected infection, 20 % were assessed as no infection, 31 % as possible infection and 49 % as infection. Content validity analysis showed that 12/13 of the items correlated significantly with at least one other statement. The range in number of significant inter-correlations was from 0 ("pain") to 8 ("general signs and symptoms of illness"). The construct validity showed that the items "temperature", "respiratory symptoms" and "general signs and symptoms of illness" were significantly related to "infection", and these were also selected in the model-building. These items predicted correct alternative responses in 61 % of the cases. Conclusion: The validation of EDIS suggests that the observation of "general signs and symptoms of illness", made by nursing assistants should be taken seriously in detecting early infection in frail elderly. Also, the statement "He/She is not as usual" should lead to follow-up.

Background: Globally, the population is ageing and lives with several chronic diseases for decades. A high symptom burden is associated with a high use of healthcare, admissions to nursing homes, and reduced quality of life. The aims of this study were to describe the multidimensional symptom profile and symptom burden in community-dwelling older people with multimorbidity, and to describe factors related to symptom burden. Methods: A cross-sectional study including 378 community-dwelling people greater than= 75 years, who had been hospitalized greater than= 3 times during the previous year, had greater than= 3 diagnoses in their medical records. The Memorial Symptom Assessment Scale was used to assess the prevalence, frequency, severity, distress and symptom burden of 31 symptoms. A multiple linear regression was performed to identify factors related to total symptom burden. Results: The mean number of symptoms per participant was 8.5 (4.6), and the mean total symptom burden score was 0.62 (0.41). Pain was the symptom with the highest prevalence, frequency, severity and distress. Half of the study group reported the prevalence of lack of energy and a dry mouth. Poor vision, likelihood of depression, and diagnoses of the digestive system were independently related to the total symptom burden score. Conclusion: The older community-dwelling people with multimorbidity in this study suffered from a high symptom burden with a high prevalence of pain. Persons with poor vision, likelihood of depression, and diseases of the digestive system are at risk of a higher total symptom burden and might need age-specific standardized guidelines for appropriate management.

CONTEXT: Relatives' sense of security in their family members' palliative home care is important, and a valid and reliable instrument is needed to measure this.

OBJECTIVES: The aim of this article is to report the development, structure, and psychometric properties of a new instrument, the Sense of Security in Care-Relatives' Evaluation (SEC-R), in palliative home care.

METHODS: Instrument development was based on a previous study and review of the literature; 213 relatives (55% women) of patients in palliative home care were recruited (response rate 73%) and participated in a structured interview based on a questionnaire. Principal component analysis (PCA) was used to identify subscales. The construction was tested in correlation with other scales and questions representing concepts expected to be related to sense of security in care.

RESULTS: The PCA resulted in three subscales, namely care interaction, mastery and patient situation, which had an explained variance of 53%. Internal consistency of the subscales ranged from 0.76 to 0.78. The final instrument comprises 17 items. The scales were associated with the quality-of-care process and the relatives' situation, perceived health, quality of life, stress, general sense of security, and general sense of security in care.

CONCLUSION: The SEC-R provides a three-component assessment of palliative home care settings using valid and reliable scales associated with other concepts. The SEC-R is a manageable means of assessment that may contribute to quality-of-care measures and to further research on relatives' sense of security in care.

In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on nondecisions about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had problems holding to the decision. The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was communication barriers, a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.

CONTEXT:

Having a sense of security is vitally important to patients who have a limited life expectancy.

OBJECTIVES:

We sought to identify the factors associated with patients' sense of security during the palliative care period.

METHODS:

We recruited 174 adult patients (65% of those eligible) from six palliative home care units. The relationship between the patients' sense of security during palliative care and individual factors was evaluated in a stepwise procedure using the generalized linear model (ordinal multinomial distribution and logit link).

RESULTS:

Respondents' ratings of their sense of security ranged from 1 (never) to 6 (always), with a mean value of 4.6 (SD 1.19). Patients with lower feelings of security experienced higher stress; more worry about personal finances; lower feelings of self-efficacy; a lower sense of security with the palliative care provided (lower ratings on subscales of care interaction); mastery; prevailed own identity; higher symptom intensity (especially depression, anxiety, and lack of well-being); lower health-related quality of life; lower attachment anxiety and avoidance; less support from family, relatives, and friends; lower comfort for those closest to them; and more often had gynecological cancer. Six variables (mastery, nervousness and stress, gynecological cancer, self-efficacy, worrying about personal finances, and avoidance) were selected in building the stepwise model.

CONCLUSION:

These findings stress the importance of palliative care services in supporting dying patients' sense of security through symptom management with a wide scope and through supporting the patients' sense of mastery, identity, and perception of a secure care interaction and also through attention to the family members' situation.

OBJECTIVE: Mutual support within the family is of great importance to maintain its proper functioning. The study aim, which was based on a family system approach, was to evaluate which variables are associated with patients' sense of support within the family in the palliative care context.

METHODS: We recruited 174 adult patients (65% of those eligible) from six palliative home care units, who had non-curable disease with an expected short-term survival, such as disseminated cancer or non-malignant diagnosis. The relationship between the endpoint and individual factors were evaluated in a stepwise model-building procedure using generalised linear model (ordinal multinomial distribution and logit link).

RESULTS: The respondents' ratings of their sense of support within the family ranged from 1 (never) to 6 (always), with a mean value of 5.2 (standard deviation 1.06). Patients who less frequently sensed family support experienced more often stress, worry about their private economy, lower self-efficacy, lower sense of security with palliative care provided (lower ratings on subscales of care interaction, mastery and prevailed own identity), more often anxiety, less often perceived general well-being for closest ones and less often sense of support from more distant family members. In the model building, three variables were selected to predict the patients' sense of support within the family.

CONCLUSIONS: The dying patients' sense of support within the family related to several factors, and these may help the palliative care teams to identify patients at risk and to alleviate suffering, for example, through supporting the closest family members.

Objective: The aim of this project was to study prolonged grievers psychosocial processes and experience during participation in a group intervention and 6–8 weeks after discontinuation. The intervention in this study was a group therapy with the aim of getting in contact with their pain and loss and confronting and working with this loss.

Methods: Data was collected by using diaries and tape-recorded interviews, analyzed with grounded theory. The participants were 11 females between the ages of 33 and 71.

Results: The main process that was found in the qualitative data was: Ambivalence when struggling and learning through work and rest towards a balance. Sub-processes were: To share and be confirmed in the group through sense of cohesion; To dare/venture to discover problems and solutions; To react when you get emotionally involved, and to compare and discover.

Significance of results: This study gives insight into prolonged grievers' thinking, which is valuable knowledge. Rather than assuming that all individuals suffering from prolonged grief need the same treatment, we suggest that there should be a range of different therapies.

ObjectiveThe aim of this paper is to report the development, construction, and psychometric properties of the new instrument Sense of Security in Care - Patients Evaluation (SEC-P) in palliative home care. MethodsThe preliminary instrument was based on a review of the literature and an analysis of qualitative interviews with patients about their sense of security. To test the instrument, 161 patients (58% women) in palliative home care were recruited and participated in a structured interview based on a comprehensive questionnaire (response rate 73%). We used principal component analysis to identify subscales and tested the construction in correlation with other scales and questions representing concepts that we expected to be related to sense of security in care. ResultsThe principal component analysis resulted in three subscales: Care Interaction, Identity, and Mastery, built on a total of 15 items. The component solution had an explained variance of 55%. Internal consistency of the subscales ranged from 0.84 to 0.69. Inter-scale correlations varied between 0.40 and 0.59. The scales were associated to varying degrees with the quality of the care process, perceived health, quality of life, stress, and general sense of security. ConclusionsThe developed SEC-P provides a three-component assessment of palliative home care settings using valid and reliable scales. The scales were associated with other concepts in ways that were expected. The SEC-P is a manageable means of assessment that can be used to improve quality of care and in research focusing on patients sense of security in care.

Background: To date there has been a paucity of research examining whether a course in palliative care influences the clinical work. Therefore a half-day course was started for different professionals. less thanbrgreater than less thanbrgreater thanObjectives: The aims of this study were to quantitatively and qualitatively explore professionals experience of the usefulness and importance of such a course. less thanbrgreater than less thanbrgreater thanDesign: An evaluation study was used with two measurement points in the quantitative part; qualitative focus group interviews were conducted three times. less thanbrgreater than less thanbrgreater thanSetting and Subjects: Data was collected in Sweden through structured and open-ended questions (n = 355) and in focus group discussions (n = 40). less thanbrgreater than less thanbrgreater thanResults: The majority of participants were allied professionals (86%). Course evaluation immediately after the intervention showed high scores. At three months, 78% of the 86 participants who had cared for a dying patient since the course claimed that the course had been useful in their work. In addition, there were improvements regarding symptom management (37%), support to family members (36%), more frequent break point conversations (31%), and improved cooperation in the teams (26%). The qualitative analysis showed that the course made participants start to compare their own working experiences with the new knowledge. When returning to work, the participants feel strengthened by the the newly acquired knowledge, but the will to improve the care also led to frustration, as some of the participants described that they wanted to change routines in the care of the dying, but felt hindered. less thanbrgreater than less thanbrgreater thanConclusion: The course was appreciated and useful in the professionals work, but it also created problems.

Majoriteten av människor i dagens västerländska samhälle dör en långsam förväntad död till följd av kronisk sjukdom. Under livets sista tid fattas många beslut inom sjukvården, som bidrar till formandet av döendet. Det finns ingen enhetlig beskrivning av vad som utgör en god död, utan detta varierar på grupp- och individnivå. Oomstridda kriterier för en god död är att få dö värdigt och utan lidande, med god livskvalitet och medbestämmande, samt med bevarade sociala relationer. Mer omdiskuterade kriterier för en god död rör personlig acceptans av döden, med kontroll och oberoende, och med fullständigt självbestämmande och uttryckt individualitet. För att sjukvården skall möjliggöra en god död för patienten behövs individualiserad vård baserad på samtal där patienten fått uttrycka sina önskemål.

Background

Care of old people with multimorbidity living at home is often fragmented with lack of coordination and information exchange between health care professionals, the elderly and their relatives. This paper describes the protocol of a randomised, controlled study, which aims to compare the efficacy of caring for older people with multimorbidity and three or more hospital admissions in the previous year at a geriatric ambulatory department based on Comprehensive Geriatric Assessment (CGA) versus usual care.

Participants and methods

A total of 400 community-dwelling old people with multimorbidity who are living in the city of Norrköping (Sweden) and one of their relatives are recruited for this trial and randomized to an intervention and a control group. Participants in the intervention group receive interdisciplinary care after a CGA at an Ambulatory Geriatric Unit with easy accessibility during working hours in addition to usual care. The control group receives usual care provided by the primary care or hospital.

Outcomes

The primary outcome is number of hospitalisation, the secondary outcomes are health-related outcomes including measures of frailty, cognition, symptom burden, feeling of security, quality of life of participants and relatives and as well as costs for health and social care. Participants will be followed for 2 years.

Discussion

This study will contribute to evidence of the effect of two different care models. The study has the potential to change care for older people with multimorbidity.

Aim. This paper is a report of a descriptive study on what life is like as a woman living with coeliac disease (CD).

Background. The therapy for CD is a gluten-free diet (GFD), and if sufferers keep strictly to this it is suggested that they will stay well. However, previous studies point out that people who are treated for CD, particularly women, experience various kinds of inconvenience in relation to having CD and to being treated with GFD.

Methods. A phenomenological approach as devised by Giorgi was used. Taperecorded qualitative interviews with a total of 15 women who were being treated for CD were conducted in 2008 in Sweden.

Results. The results demonstrated that CD can influence women’s lives in different ways. The general structure of being a woman with coeliac disease was described as a striving towards a normalised lifeworld. Three  conditions necessary to achieve a normalised life were described, namely being secure, being in control and being seen and included.

Conclusion. The results of this study can help caregivers, and others, to understand and develop support for women with this condition.

INTRODUCTION: Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. METHOD: Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. RESULTS: The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants' perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others' intentions, ranging from full trust to complete mistrust. CONCLUSIONS: Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.

PURPOSE: Although intolerable suffering is a core concept used to justify euthanasia, little is known about dying cancer patients' own interpretations and conclusions of suffering in relation to euthanasia. METHODS: Sixty-six patients with cancer in a palliative phase were selected through maximum-variation sampling, and in-depth interviews were conducted on suffering and euthanasia. The interviews were analyzed using qualitative content analysis with no predetermined categories. RESULTS: The analysis demonstrated patients' different perspectives on suffering in connection to their attitude to euthanasia. Those advocating euthanasia, though not for themselves at the time of the study, did so due to (1) perceptions of suffering as meaningless, (2) anticipatory fears of losses and multi-dimensional suffering, or (3) doubts over the possibility of receiving help to alleviate suffering. Those opposing euthanasia did so due to (1) perceptions of life, despite suffering, as being meaningful, (2) trust in bodily or psychological adaptation to reduce suffering, a phenomenon personally experienced by informants, and (3) by placing trust in the provision of help and support by healthcare services to reduce future suffering. CONCLUSIONS: Dying cancer patients draw varying conclusions from suffering: suffering can, but does not necessarily, lead to advocations of euthanasia. Patients experiencing meaning and trust, and who find strategies to handle suffering, oppose euthanasia. In contrast, patients with anticipatory fears of multi-dimensional meaningless suffering and with lack of belief in the continuing availability of help, advocate euthanasia. This indicates a need for healthcare staff to address issues of trust, meaning, and anticipatory fears.

Objective

Attachment theory has received much interest lately in relation to how adults cope with stress and severe illness. The aim of this study was using the experiences of patients and family members to explore palliative home care as a ‘secure base’ (a central concept within the theory).

Methods

Twelve patients and 14 family members were interviewed during ongoing palliative home care. The interviews were analysed with deductive qualitative content analysis.

Results

Informants expressed the relevance of sensing security during palliative home care because death and dying were threats that contributed to vulnerability. Palliative home care could foster a feeling of security and provide a secure base. This was facilitated when informants had trust in staff (e.g. due to availability and competence in providing symptom relief), felt recognised as individuals and welcomed to contact the team in times of needs. Being comfortable, informed and having an everyday life also contributed to a perception of palliative home care as a secure base. Family members stressed the importance of being relieved from responsibilities that were too heavy. The underlying meanings of experiencing palliative home care as a secure base involved gaining a sense of control and of inner peace, perceiving that despite a demanding and changed life situation, one could continue partially being oneself and having something to hope for, even if this no longer concerned cure for the ill person.

Conclusions

Important aspects of palliative home care as providing a secure base were identified and these have implications for clinical practice. Copyright © 2011 John Wiley & Sons, Ltd.