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  • 1.
    Drewes, Asbjørn M.
    et al.
    Mech-Sense, Department of Gastroenterology and Hepatology, Aalborg University Hospital, Denmark.
    Munkholm, Pia
    NOH (Nordsjællands Hospital) Gastroenterology, Denmark.
    Simrén, Magnus
    Department of Internal Medicine & Clinical Nutrition, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Sweden.
    Breivik, Harald
    Department of Pain Management and Research, Oslo University Hospital and University of Oslo, Norway.
    Kongsgaard, Ulf E.
    Department of Anaesthesiology, Division of Emergencies and Critical Care, Oslo University Hospital, Norway and Medical Faculty, University of Oslo, Norway.
    Hatlebakk, Jan G.
    Department of Clinical Medicine, Haukeland University Hospital, Bergen, Norway.
    Agreus, Lars
    Division of Family Medicine, Karolinska Institute, Stockholm, Sweden.
    Friedrichsen, Maria
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Christrup, Lona L.
    Department of Drug Design and Pharmacology, Faculty of Health Sciences, University of Copenhagen, Denmark.
    Definition, diagnosis and treatment strategies for opioid-induced bowel dysfunction—: Recommendations of the Nordic Working Group2016In: Scandinavian Journal of Pain, ISSN 1877-8860, E-ISSN 1877-8879, Vol. 11, p. 111-122Article, review/survey (Refereed)
    Abstract [en]

    Background and aims: Opioid-induced bowel dysfunction (OIBD) is an increasing problem due to the common use of opioids for pain worldwide. It manifests with different symptoms, such as dry mouth,gastro-oesophageal reflux, vomiting, bloating, abdominal pain, anorexia, hard stools, constipation and incomplete evacuation. Opioid-induced constipation (OIC) is one of its many symptoms and probably the most prevalent. The current review describes the pathophysiology, clinical implications, and treatment of OIBD.Methods: The Nordic Working Group was formed to provide input for Scandinavian specialists in multiple, relevant areas. Seven main topics with associated statements were defined. The working plan provided a structured format for systematic reviews and included instructions on how to evaluate the level of evidence according to the GRADE guidelines. The quality of evidence supporting the different statements was rated as high, moderate or low. At a second meeting, the group discussed and voted on each section with recommendations (weak and strong) for the statements.Results: The literature review supported the fact that opioid receptors are expressed throughout the gastrointestinal tract. When blocked by exogenous opioids, there are changes in motility, secretion and absorption of fluids, and sphincter function that are reflected in clinical symptoms. The group supported a recent consensus statement for OIC, which takes into account the change in bowel habits for at least one week rather than focusing on the frequency of bowel movements. Many patients with pain received opioid therapy and concomitant constipation is associated with increased morbidity and utilization of healthcare resources. Opioid treatment for acute postoperative pain will prolong the postoperative ileus.

  • 2.
    Eckerblad, Jeanette
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Theander, Kersti
    Karlstad University, Sweden.
    Ekdahl, Anne
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine in Linköping. Karolinska Institute KI, Sweden.
    Unosson, Mitra
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Wiréhn, Ann-Britt
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland. Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Symptom burden in community-dwelling older people with multimorbidity: a cross-sectional study2015In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 15, no 1Article in journal (Refereed)
    Abstract [en]

    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.

  • 3.
    Edvardsson, Maria
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Drug Research. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Finspång, Health care Center Finspång.
    Sund-Levander, Märtha
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Wressle, Ewa
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Marcusson, Jan
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Grodzinsky, Ewa
    Linköping University, Department of Medical and Health Sciences, Division of Drug Research. Linköping University, Faculty of Medicine and Health Sciences. Division of Forensic Genetics and Forensic Toxicology, National Board of Forensic Medicine, Sweden.
    Differences in levels of albumin, ALT, AST, gamma-GT and creatinine in frail, moderately healthy and healthy elderly individuals2018In: Clinical Chemistry and Laboratory Medicine, ISSN 1434-6621, E-ISSN 1437-4331, Vol. 56, no 3, p. 471-478Article in journal (Refereed)
    Abstract [en]

    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.

  • 4.
    Ekdahl, Anne W.
    et al.
    Karolinska Institute, Sweden; Helsingborg Hospital, Sweden.
    Alwin, Jenny
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Eckerblad, Jeanette
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Husberg, Magnus
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Lindh Mazya, Amelie
    Karolinska Institute, Sweden; Danderyd Hospital, Sweden.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Unosson, Mitra
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Wiklund, Rolf
    Region Östergötland, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care.
    Carlsson, Per
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Long-Term Evaluation of the Ambulatory Geriatric Assessment: A Frailty Intervention Trial (AGe-FIT): Clinical Outcomes and Total Costs After 36 Months2016In: Journal of the American Medical Directors Association, ISSN 1525-8610, E-ISSN 1538-9375, Vol. 17, no 3, p. 263-268Article in journal (Refereed)
    Abstract [en]

    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 >= 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.

  • 5.
    Ekdahl, Anne W
    et al.
    Region Östergötland, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine in Linköping. Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Division of Clinical Geriatrics, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm.
    Wirehn, Ann-Britt
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care.
    Alwin, Jenny
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Unosson, Mitra
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Husberg, Magnus
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Eckerblad, Jeanette
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Carlsson, Per
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    Costs and Effects of an Ambulatory Geriatric Unit (the AGe-FIT Study): A Randomized Controlled Trial2015In: Journal of the American Medical Directors Association, ISSN 1538-9375, Vol. 16, no 6, p. 497-503Article in journal (Refereed)
    Abstract [en]

    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.

  • 6.
    Erichsén, Eva
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Constipation in specialized palliative care: factors related to constipation when applying different definitions2016In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 2, p. 691-698Article in journal (Refereed)
    Abstract [en]

    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.

  • 7.
    Erichsén, Eva
    et al.
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Constipation in specialized palliative care: prevalence, definition and patient perceived symptom distress2015In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 7, p. 585-592Article in journal (Refereed)
    Abstract [en]

    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.

  • 8.
    Eriksson, Helene
    et al.
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Norrköping, Sweden.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Hjelm, Katarina
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Friedrichsen, Maria
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 2, p. e0147694-, article id 26845149Article in journal (Refereed)
    Abstract [en]

    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.

  • 9.
    Friedrichsen, Maria
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Hajradinovic, Yvonne
    Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jakobsson, Maria
    Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Milberg, Per
    Linköping University, Department of Physics, Chemistry and Biology, Biology. Linköping University, Faculty of Science & Engineering.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Palliative care consultation team on acute wards-an intervention study with pre-post comparisons2017In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, no 2, p. 371-380Article in journal (Refereed)
    Abstract [en]

    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.

  • 10.
    Hajradinovic, Yvonne
    et al.
    Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Vrinnevi Hosp, Sweden; Sophiahemmet Univ, Sweden.
    Tishelman, Carol
    Karolinska Inst, Sweden; Vasterbottens Cty Council VLL, Sweden; Stockholms Country Council SLL, Sweden.
    Lindqvist, Olav
    Karolinska Inst, Sweden; Umea Univ, Sweden.
    Goliath, Ida
    Karolinska Inst, Sweden; Ersta Hosp, Sweden.
    Family members experiences of the end-of-life care environments in acute care settings - a photo-elicitation study2018In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 13, no 1, article id 1511767Article in journal (Refereed)
    Abstract [en]

    Purpose: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person. Method: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings. Results: The interpretive description analysis process resulted in three constructed themes-Aesthetic and unaesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times. Conclusion: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.

  • 11.
    Heedman, P. A.
    et al.
    Region Östergötland, Local Health Care Services in Central Östergötland. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Åstradsson, E.
    Region Östergötland, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Blomquist, K.
    Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Sjödahl, Rune
    Linköping University, Department of Clinical and Experimental Medicine, Division of Surgery, Orthopedics and Oncology. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Surgery in Linköping.
    Palliation of Malignant Biliary Obstruction: Adverse Events are Common after Percutaneous Transhepatic Biliary Drainage2018In: Scandinavian Journal of Surgery, ISSN 1457-4969, E-ISSN 1799-7267, Vol. 107, no 1, p. 48-53Article in journal (Refereed)
    Abstract [en]

    Background and Aim: Endoscopic stents in the common bile duct is the first treatment choice to alleviate symptoms of biliary obstruction due to malignant disease. When endoscopic stenting fails in palliative patients, one option is to use a percutaneous transhepatic biliary drainage, but it is not clear whether and how it can reduce the symptom load. The aim of this study was to evaluate benefits and disadvantages of percutaneous transhepatic biliary drainage in palliative care. Material and Methods: Inclusion criteria were malignant disease and bilirubin 26 mu mol/L in plasma. A structured protocol for obtaining data from the medical records was used. Data were collected from the time of last computed tomography scan before the percutaneous transhepatic biliary drainage was placed and during 14days afterward. Results and Conclusion: Inclusion criteria were fulfilled in 140 patients. Median age was 70years (33-91years). Some 126 patients had a remaining external percutaneous transhepatic biliary drainage. Jaundice was the initial symptom in 62 patients (44%). Within the first week after percutaneous transhepatic biliary drainage, the bilirubin decreased from 237 mu mol/L (31-634) to 180 mu mol/L (17-545). Only 25% reached a level below the double upper reference value. Pruritus occurred in 27% before the percutaneous transhepatic biliary drainage, but the bilirubin value did not differ from patients without pruritus. However, the pruritus was relieved in 56% with percutaneous transhepatic biliary drainage. Antibiotic prophylaxis protected to some extent from infectious complications. Adverse events were common and early mortality was high (16% within 14days). Jaundice should not by itself be an indication for percutaneous transhepatic biliary drainage for palliation except when the aim is to prepare the patient for chemotherapy. It is mandatory that the patients are informed carefully about what can be expected regarding the positive effects and the risks of adverse events.

  • 12.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Sandgren, Anna
    Linneaus Univ, Sweden.
    Strömberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping.
    Mårtensson, Jan
    Jonkoping Univ, Sweden.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    I was told that I would not die from heart failure2018In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 41, p. 41-45Article in journal (Refereed)
    Abstract [en]

    Aim and objectives: To describe patients experiences of communication about their heart failure prognosis and explore how these experiences affected their preferences for future communication about the prognosis. Background: Professionals need to discuss about the heart failure prognosis with patients in order to improve their understanding of their illness and address palliative care needs. Methods: An inductive and exploratory design was used. A total of 24 patients (75% men, 52-87 years of age) in New York Heart Association class I-III from primary outpatient care participated in focus group-, or individual semi-structured interviews. Thematic analysis was used to identify and interpret patterns in the data. Findings: Two overarching themes, "The message sent" and "Hoping for the best or preparing for the worst", each with three sub-themes, were discovered during the thematic analysis. Many patients described that professionals had not provided them with any prognosis information at all. Other patients described professional information about prognosis that was given in an either very optimistic or very negative way. However, patients also described situations where professionals had given information in a way that they thought was perfect for them to handle, and in accordance with their preferences. Conclusion: This study shows that patients have different experiences and preferences for communication about prognosis and uses different approaches in order to cope living with a chronic illness such as heart failure.

    The full text will be freely available from 2019-03-12 11:25
  • 13.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Strömberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Sandgren, Anna
    Linnaeus Univ, Sweden.
    Martensson, Jan
    Jonkoping Univ, Sweden.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Using co-design to develop an intervention to improve communication about the heart failure trajectory and end-of-life care2018In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, article id 85Article in journal (Refereed)
    Abstract [en]

    Background: The aim of this paper was to describe the development of an intervention that is developed to improve communication about the heart failure (HF) trajectory and end-of-life care. We also present data that provides a first insight in specific areas of feasibility of the intervention. Methods: Co-design was used and patients, family members and health care professionals were constructive participants in the design process of the intervention. Feasibility of the intervention was tested in two areas; acceptability and limited efficacy. Results: Two communication tools were designed and evaluated; 1) a Question Prompt List (QPL) for patients and family members and 2) a communication course for professionals which was web -based with one face-to-face training day with simulation. Data on feasibility was collected with questionnaires that were developed for this study, from the 13 participants who completed the course (all nurses). They reported improved knowledge, confidence and skills to discuss the HF trajectory and end-of-life care. The QPL was evaluated to be a useful tool in communication with patients and family members. Conclusions: In a co-design process, future users identified the need for a QPL and a communication course. These communication tools can be used as a dual intervention to improve communication about the HF trajectory and end-of-life care. The QPL can help patients and families to ask questions about the HF trajectory and end-of-life care. The communication course can prepare the professionals to be knowledgeable, confident and skilled to discuss the questions in the QPL. Before the tools are ready for implementation in clinical practice, further studies testing the feasibility of the intervention are needed, including also patients and their families.

  • 14.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    van der Wal, Martje H. L.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. University of Groningen, Netherlands.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Martensson, Jan
    Jonköping University, Sweden.
    Strömberg, Anna
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Patient-Nurse Communication about Prognosis and End-of-Life Care2015In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 10, p. 865-871Article in journal (Refereed)
    Abstract [en]

    Background: Although several studies advise that discussions about prognosis and end-of-life care should be held throughout the whole heart failure (HF) trajectory, data is lacking on the prevalence and practice of such discussions in HF care. Objective: The study objective was to explore how often and why HF nurses in outpatient clinics discuss prognosis and end-of-life care in the context of patient education. Methods: This was a descriptive and comparative study. Participants were HF nurses from Swedish and Dutch HF outpatient clinics. Measurements were taken via a survey for both quantitative and qualitative data. Additional data was collected via open-ended questions and analyzed with content analysis. Results: Two hundred seventy-nine nurses registered 1809 patient conversations using a checklist. Prognosis and end-of-life care were among the least frequently discussed topics, whereas symptoms of HF was discussed most often. Prognosis was discussed with 687 patients (38%), and end-of-life care was discussed with 179 patients (10%). Prognosis and end-of-life care were discussed more frequently in The Netherlands than in Sweden (41% versus 34%, pless than0.001, 13% versus 4%, pless than0.001). The nurses did not always recognize prognosis and end-of-life care discussions as a part of their professional role. Conclusions: Currently, patient-nurse communication about prognosis and end-of-life care does not seem to be routine in patient education in HF clinics, and these discussions could be included more often. The reasons for nurses to discuss these topics were related to clinical routines, the patients situation, and professional responsibilities. To improve future care, communication with patients needs to be further developed.

  • 15.
    Kastbom, Lisa
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Primary Care Center, Primary Health Care Center Ljungsbro.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Karlsson, Marit
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    A good death from the perspective of palliative cancer patients2017In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, no 3, p. 933-939Article in journal (Refereed)
    Abstract [en]

    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.

  • 16.
    Krevers, Barbro
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    The sense of security in care-relatives' evaluation instrument: its development and presentation.2015In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 49, no 3, p. 586-94Article in journal (Refereed)
    Abstract [en]

    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.

  • 17.
    Ludvigsson, Mikael
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Marcusson, Jan
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Wressle, Ewa
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Markers of subsyndromal depression in very old persons.2016In: International Journal of Geriatric Psychiatry, ISSN 0885-6230, E-ISSN 1099-1166, Vol. 31, no 6, p. 619-628Article in journal (Refereed)
    Abstract [en]

    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.

  • 18.
    Ludvigsson, Mikael
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine in Linköping. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Marcusson, Jan
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine in Linköping.
    Wressle, Ewa
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine in Linköping.
    Normal Aging or Depression? A Qualitative Study on the Differences Between Subsyndromal Depression and Depression in Very Old People.2015In: The Gerontologist, ISSN 0016-9013, E-ISSN 1758-5341, Vol. 55, no 5, p. 760-769Article in journal (Refereed)
    Abstract [en]

    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.

  • 19.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Attachment figures when death is approaching: a study applying attachment theory to adult patients' and family members' experiences during palliative home care2017In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 25, no 7, p. 2267-2274Article in journal (Refereed)
    Abstract [en]

    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.

  • 20.
    Milberg, Anna
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Torres, Sandra
    Uppsala University, Sweden.
    Ågård, Pernilla
    Uppsala University, Sweden.
    Health Care Professionals Understandings of Cross- Cultural Interaction in End- of- Life Care: A Focus Group Study2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 11, article id e0165452Article in journal (Refereed)
    Abstract [en]

    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.

  • 21.
    Ring Jacobsson, Lisa
    et al.
    Karolinska Institute, Sweden.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Hjelm, Katarina
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Experiences and own management regarding residual symptoms among people with coeliac disease2017In: Applied Nursing Research, ISSN 0897-1897, E-ISSN 1532-8201, Vol. 35, p. 53-58Article in journal (Refereed)
    Abstract [en]

    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.

  • 22.
    Ring Jacobsson, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Hjelm, Katarina
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Experiences, own management and beliefs of residual discomfort among people with coeliac disease: A qualitative content analysis after years of treatment.2015In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702Article in journal (Refereed)
    Abstract [en]

    xx

  • 23.
    Ring Jacobsson, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Hjelm, Katarina
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Experiences, Own Management and Beliefs regarding Residual Symptoms among People with Coeliac DiseaseManuscript (preprint) (Other academic)
    Abstract [en]

    Objective: To explore experiences and beliefs concerning residual symptoms despite a gluten-free diet in women and men with coeliac disease, with a focus on causes and management.

    Background: Between 7% and 30% of people with coeliac disease suffer from residual symptoms, despite following a long-term gluten-free diet, and it has been proposed that women in particular, continue to experience such inconveniences. There is a lack of knowledge about own beliefs concerning the underlying causes of persistent symptoms among people with coeliac disease and their own management of these symptoms.

    Methods: A qualitative explorative design with semi-structured interviews with 22 adults, 11 females and 11 males, with coeliac disease in Sweden. Data were analyzed using qualitative content analysis.

    Results: The disease was continuing to have a substantial impact on the informants’ lives even after several years’ treatment. The interviews revealed residual symptoms of both a gastrointestinal and extra-intestinal nature, which were considered to influence their personality. The management of persistent symptoms resembled thorough detective work, and both efforts to find the missing puzzle piece and strategies to prevent problems were used. Beliefs about the underlying causes of these symptoms were bodily convictions and that it was impossible to live completely gluten-free.

    Conclusion: People with treated coeliac disease, irrespective of gender, 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 of these people. Furthermore, information to people who have just been diagnosed should make them aware of the possibility that they may come to experience continued symptoms, despite treatment.

  • 24.
    Ring Jacobsson, Lisa
    et al.
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Hjelm, Katarina
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Friedrichsen, Maria
    Linköping University, Faculty of Medicine and Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Linköping University, Department of Social and Welfare Studies, Division of Nursing Science.
    Gaining perspective on own illness - The lived experiences of a patient education program for women with treated coeliac disease.2016In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 25, no 9-10, p. 1229-1237Article in journal (Refereed)
    Abstract [en]

    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.

  • 25.
    Sund-Levander, Märtha
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Rodhe, Nils
    Uppsala University, Sweden.
    Tingström, Pia
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Grodzinsky, Ewa
    Linköping University, Department of Medical and Health Sciences, Division of Drug Research. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care.
    Differences in predictors of 5-year survival over a 10-year period in two cohorts of elderly nursing home residents in Sweden2016In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 30, no 4, p. 714-720Article in journal (Refereed)
    Abstract [en]

    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.

  • 26.
    Tingström, Pia
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Rodhe, N.
    Uppsala University, Sweden.
    Ernerudh, Jan
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuro and Inflammation Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Diagnostics, Department of Clinical Immunology and Transfusion Medicine.
    Grodzinsky, Ewa
    Linköping University, Department of Medical and Health Sciences, Division of Drug Research. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in West Östergötland, Research & Development Unit in Local Health Care.
    Sund-Levander, Märtha
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Nursing assistants: "He seems to be ill" - a reason for nurses to take action: validation of the Early Detection Scale of Infection (EDIS)2015In: BMC Geriatrics, ISSN 1471-2318, E-ISSN 1471-2318, Vol. 15, no 122Article in journal (Refereed)
    Abstract [en]

    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.

  • 27.
    Torres, Sandra
    et al.
    Department od Sociology, Uppsala University.
    Ågård, Pernilla
    Department od Sociology, Uppsala University.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care. Linköping University, Faculty of Medicine and Health Sciences.
    The ’Other’ in end-of-life care: care providers on patients with migrant backgrounds2016In: Journal of Intercultural Studies, ISSN 0725-6868, E-ISSN 1469-9540, Vol. 37, no 2, p. 103-117Article in journal (Refereed)
    Abstract [en]

    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.

  • 28.
    van der Wal, Martje
    et al.
    Linköping University, Faculty of Medicine and Health Sciences. University Medical Centre Groningen, University of Groningen, The Netherlands.
    Hjelmfors, Lisa
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
    Mårtenson, Jan
    Jönköping University, Sweden.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strömberg, Anna
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping. UCI Program in Nursing Science, University of California, Irvine. USA.
    Jaarsma, Tiny
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. UCI Program in Nursing Science, University of California, Irvine, USA; Mary MacKillop Institute for Health Research, Australian Catholic University, Melbourne, Australia.
    Variables Related to Communication About Prognosis Between Nurses and Patients at Heart Failure Clinics in Sweden and the Netherlands2018In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 33, no 2, p. E1-E6Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:

    In contrast to recommendations in recent guidelines, prognosis is not optimally discussed with patients with heart failure (HF). Reasons for not doing so can be related to both patient and provider characteristics.

    PURPOSE:

    The purpose of the study was to explore which patient- and nurse-related variables influence discussing prognosis with patients at an HF clinic.

    METHOD:

    Data from a previous survey on attitudes and clinical practice of HF nurses on discussing prognosis that was conducted in Sweden and the Netherlands were combined with data from a registration on topics that nurses discussed with their patients during a prespecified week at the HF clinic. Multivariable logistic regression analysis was performed to assess which variables are related to discussing prognosis.

    RESULTS:

    A total of 275 HF nurses (mean age, 49 years) and data of 1633 patients with HF (mean age, 71 years) were included in the study. Prognosis was discussed with 42% of all patients during the visit at the HF clinic. Patients with whom prognosis was discussed were more often in New York Heart Association classes III to IV (odds ratio [OR], 1.81; 95% confidence interval [CI], 1.44-2.26). Nurses discussing prognosis reported more knowledge on the topic (OR, 1.71; 95% CI, 1.36-2.16) and discussed more topics with the patient (OR, 1.27; 95% CI, 1.21-1.32). Dutch HF nurses were more likely to discuss prognosis compared with their Swedish colleagues (OR, 1.83; 95% CI, 1.43-2.33).

    CONCLUSIONS:

    Discussing prognosis with patients with HF by nurses at the HF clinic is related to the characteristics of patients and HF nurses. Future interventions to improve communications about prognosis therefore should have a broad approach.

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