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  • 1.
    Cronfalk, Berit
    et al.
    Inst. onk-pat. Karolinska Inst.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Strang, Peter
    Ints.för onkologi-patologi Karolinska institutet.
    A one-day education in soft tissue massage: Experiences and opinions as evaluated by nursing staff in palliative care2008In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 6, no 2, p. 141-148Article in journal (Refereed)
    Abstract [en]

    Objective: Increasing awareness of well-being aspects of physical touch has spurred the appreciation for soft tissue massage (STM) as part of palliative care. Educational programs are available but with no specific focus on utilization for this kind of care. The aim was to study the feasibility of a 1-day course in STM in clarifying nursing staff's experiences and opinions, but also to shed light on their motivation and ability to employ STM in the care of dying cancer patients. Method: In all, 135 nursing staff participated. The course consisted of theory and hands-on training (hand-foot-, back massage). Focus-groups with 30/135 randomly chosen participants were conducted 4 weeks after the intervention. This study engaged a qualitative approach using content analysis. Results: The overall opinion of the 1-day course was positive. The majority experienced the contents of the course to be adequate and sufficient for clinical care. They emphasized the pedagogical expertise as valuable for the learning process. The majority of nurses shared the opinion that their extended knowledge clarified their attitudes on STM as a complement in palliative care. Still, a few found it to be too basic and/or intimate. Three categories emerged during the analysis: experiences of and attitudes toward the education, experiences of implementing the skills in every-day care situations, and attitudes to the physical body in nursing care. Significance of results: The approach to learning and the pedagogical skills of the teacher proved to be of importance for how new knowledge was perceived among nurses. The findings may encourage hospital organizations to introduce short courses in STM as an alternative to more extensive education. Copyright © 2008 Cambridge University Press 2008.

  • 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.

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  • 3.
    Edvardsson, Maria
    et al.
    Region Östergötland, Primary Care Center, Primary Health Care Center Finspång. Linköping University, Department of Biomedical and Clinical Sciences, Division of Clinical Chemistry and Pharmacology. Linköping University, Faculty of Medicine and Health Sciences.
    Sund-Levander, Märtha
    Linköping University, Faculty of Medicine and Health Sciences. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Nursing Sciences and Reproductive Health. Region Östergötland, Anaesthetics, Operations and Specialty Surgery Center, Department of Neurosurgery.
    Milberg, Anna
    Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine.
    Ernerudh, Jan
    Linköping University, Department of Biomedical and Clinical Sciences, Division of Inflammation and Infection. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Diagnostics, Department of Clinical Immunology and Transfusion Medicine.
    Wressle, Ewa
    Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics. Linköping University, Department of Health, Medicine and Caring Sciences.
    Marcusson, Jan
    Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Department of Acute Internal Medicine and Geriatrics. Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine.
    Grodzinsky, Ewa
    Linköping University, Department of Biomedical and Clinical Sciences, Division of Clinical Chemistry and Pharmacology. Linköping University, Faculty of Medicine and Health Sciences.
    Classification of ≥80-year-old individuals into healthy, moderately healthy, and frail based on different frailty scores affects the interpretation of laboratory results2022In: Asian Journal of Medical Sciences, ISSN 2091-0576, E-ISSN 2091-0576, Vol. 13, no 9, p. 63-71Article in journal (Refereed)
    Abstract [en]

    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.

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  • 4.
    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.

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  • 5.
    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 &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.

  • 6.
    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.

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  • 7.
    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.

  • 8.
    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.

  • 9.
    Eriksson, Helene
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Andersson, Gisela
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Olsson, Louise
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. 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. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Friedrichsen, Maria
    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 East Östergötland, Center of Palliative Care.
    Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden2014In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 46, no 3, p. 162-170Article in journal (Refereed)
    Abstract [en]

    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.

  • 10.
    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, 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.

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  • 11.
    Friedrichsen, Maria
    et al.
    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 East Östergötland, Center of Palliative Care.
    Hajradinovic, Yvonne
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Sundberg, Lars
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Axmacher Jonsson, Monica
    Östergötlands Läns Landsting, 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. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Prolonged grievers: A qualitative evaluation of a support group intervention2014In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 12, no 4, p. 299-308Article in journal (Refereed)
    Abstract [en]

    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.

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  • 12.
    Friedrichsen, Maria
    et al.
    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 East Östergötland, Center of Palliative Care. Vrinnevi Hospital, Sweden .
    Heedman, Per-Anders
    Vrinnevi Hospital, Sweden .
    Astradsson, Eva
    Vrinnevi Hospital, Sweden .
    Jakobsson, Maria
    Vrinnevi Hospital, Sweden .
    Milberg, Anna
    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 East Östergötland, Center of Palliative Care. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Vrinnevi Hospital, Sweden .
    Does a Half-Day Course about Palliative Care Matter? A Quantitative and Qualitative Evaluation among Health Care Practitioners2013In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 16, no 5, p. 496-501Article in journal (Refereed)
    Abstract [en]

    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.

  • 13.
    Friedrichsen, Maria
    et al.
    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 East Östergötland, Department of LAH/Linnéa.
    Lindholm, Ann
    Stockholms sjukhem.
    Milberg, Anna
    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 Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Experiences of truth disclosure in terminally ill cancer patients in palliative home care2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 2, p. 173-180Article in journal (Refereed)
    Abstract [en]

    Objective: The aim of this study was to explore the experiences and preferences of terminally ill cancer patients regarding truth telling in the communication of poor prognoses.

    Method: We recorded and transcribed interviews with 45 patients who knew their cancer was terminal, and analyzed their responses hermeneutically.

    Results: Patients identified three different modes of truth: (1) the absolute objective truth that they are dying; (2) the partial truth about their condition including some facts but not all of the details; and (3) the desired truth, originating in the patient's own beliefs about a healthy or better life. Coping strategies were related to patients’ preferred mode of truth: (1) facing the truth in order to take action; (2) facing some parts of the truth in order to maintain hope; and (3) hovering between facing and avoiding the truth. In their struggle for existential survival, patients used different coping strategies, changing from one to another depending upon the circumstances.

    Significance of results: Varying use of different coping strategies impacts on patient preferences concerning communication about bad news with their doctors. Truth-telling entails more than merely providing information related to the forthcoming death. It also concerns how physicians or other healthcare staff can support the patient's existential survival by fine-tuning the communication of “truth” according to the individuals’ preferences.

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    Truth disclosure
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  • 14.
    Friedrichsen, Maria
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Concerns about losing control when breaking bad news to terminally ill patients with cancer: Physicians' perspective2006In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 9, no 3, p. 673-682Article in journal (Refereed)
    Abstract [en]

    Objective: To study and explore problems perceived by physicians when breaking bad news to advanced cancer patients about discontinuing or not offering tumor-specific treatment due to incurable cancer. Design: A qualitative phenomenographic interview study. Setting: The county of Östergötland in Sweden. Participants: Thirty physicians with different demographic characteristics. Results: According to the physicians' answers breaking bad news was perceived as involving a risk of losing control in different ways, regarding emotions, oneself, confidence, professionalism and patient trust. Four different main categories described as problems were identified, perceptions focusing on existential thoughts, relationships, knowledge, and perceptions related to time and environmental disturbances. Conclusion: Physicians perceived that breaking bad news to dying patients with cancer involved a risk of losing control. Existential thoughts and a lack of knowledge contribute to this risk. Theoretical education in existentiality/spirituality and clinical practice in a palliative context may help maintaining control. © Mary Ann Liebert, Inc.

  • 15.
    Karlsson, Marit
    et al.
    Linköping University, Department of Clinical and Experimental Medicine, Division of Neuroscience. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Milberg, Anna
    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 Advanced Home Care in Linköping.
    Hur vill vi dö? Snabbt, smärtfritt, sederad och med sällskap?: Den goda döden och konsekvenser för sjukvården2013In: Socialmedicinsk Tidskrift, ISSN 0037-833X, Vol. 90, no 1, p. 132-139Article in journal (Refereed)
    Abstract [sv]

    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.

  • 16.
    Karlsson, Marit
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Central County Primary Health Care.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Nägga, Katarina
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine.
    Det är ju geriatrik som efterfrågas! "[Geriatrics are wanted!]."2002In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 99, no 40, p. 3976-3976Article in journal (Other (popular science, discussion, etc.))
    Abstract [en]

          

  • 17.
    Karlsson, Marit
    et al.
    Karolinska institutet.
    Milberg, Anna
    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 Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institute, Stockholm.
    Correction: Dying with dignity according to Swedish medical students (vol 14, pg 334, 2006)2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 7, p. 1065-1065Article in journal (Refereed)
    Abstract [en]

    n/a

  • 18.
    Karlsson, Marit
    et al.
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, LAH Linköping. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Dying cancer patients' own opinions on euthanasia: An expression of autonomy? A qualitative study.2012In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 26, no 1, p. 34-42Article in journal (Refereed)
    Abstract [en]

    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.

  • 19.
    Karlsson, Marit
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Central County Primary Health Care.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Strang, Peter
    FoUU-enheten Stockholms sjukhem Karolinska Institutet.
    Dying with dignity according to Swedish medical students2006In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 14, no 4, p. 334-339Article in journal (Refereed)
    Abstract [en]

    Goal of work: To die with dignity is an important but ambiguous concept, and it is used in contradictory contexts, both for the promotion of palliative care and as an argument for euthanasia. Our goal was to explore medical students' definition of a dignified death. Patients and methods: A questionnaire containing open-ended questions was answered anonymously by 165 first-and fifth-year medical students. The data were analysed using qualitative content analysis with no predetermined categories. Main results: The students' descriptions of a dignified death resulted in five categories of death: (1) without suffering, (2) with limited medical interventions, (3) with a sense of security, which implied a safe environment nursed by professional staff, (4) with autonomy, respect for the individual and empowerment to the patient and (5) with acceptance. These findings show similarity to the established concepts of a good death, as well as the view of a dignified death by terminally ill patients. Conclusions: The data suggest that the students perceive that the medical system is over-treating patients and sometimes causing harm to dying patients. The results reveal a potential misunderstanding and contradiction relating to death without suffering and the use of necessary palliative interventions. These findings are important when planning education as regards palliative care and dignified death. © Springer-Verlag 2005.

  • 20.
    Karlsson, Marit
    et al.
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies, Health, Activity, Care. Östergötlands Läns Landsting, Local Health Care Services in the East of Östergötland, Centre of Competence in Palliative Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, LAH Linköping. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Department of Oncology-Pathology, Karolinska Institutet, Stockholm.
    Suffering and euthanasia: a qualitative study of dying cancer patients' perspectives.2012In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 20, no 5, p. 1065-1071Article in journal (Refereed)
    Abstract [en]

    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.

  • 21.
    Karlsson, Marit
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Central County Primary Health Care.
    Strang, Peter
    KI, Stockholm.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Attitudes toward euthanasia among Swedish medical students2007In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 21, no 7, p. 615-22Article in journal (Refereed)
  • 22.
    Kastbom, Lisa
    et al.
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Primary Care Center, Primary Health Care Center Kisa.
    Falk, Magnus
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Primary Care Center, Primary Health Care Center Kärna.
    Karlsson, Marit
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in Central Östergötland, Närvårdskliniken. Linköping University, Department of Biomedical and Clinical Sciences, Division of Surgery, Orthopedics and Oncology.
    Tengblad, Anders
    Primary Hlth Care Ctr Wetterhalsan, Sweden.
    Milberg, Anna
    Linköping University, Department of Health, Medicine and Caring Sciences, Division of Prevention, Rehabilitation and Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Prevalence, content and significance of advance care planning in nursing home patients2022In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 40, no 1, p. 29-38Article in journal (Refereed)
    Abstract [en]

    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.

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  • 23.
    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. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    The instrument Sense of Security in Care - Patients Evaluation: its development and presentation2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 8, p. 914-920Article in journal (Refereed)
    Abstract [en]

    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.

  • 24.
    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.

  • 25.
    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.
    Bernfort, Lars
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Medicine and Health Sciences.
    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 Medical and Health Sciences, Division of Community Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Direct Costs of Very Old Persons with Subsyndromal Depression: A 5-Year Prospective Study2018In: The American journal of geriatric psychiatry, ISSN 1064-7481, E-ISSN 1545-7214, Vol. 26, no 7, p. 741-751Article in journal (Refereed)
    Abstract [en]

    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.

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    Direct Costs of Very Old Persons with Subsyndromal Depression: A 5-Year Prospective Stud
  • 26.
    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.

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  • 27.
    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.

  • 28.
    Mazya, A. L.
    et al.
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping. Danderyd Hospital, Sweden .
    Eckerblad, Jeanette
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. 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.
    Hellström, Ingrid
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Krevers, Barbro
    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. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care. Vrinnevi Hospital, Sweden .
    Unosson, Mitra
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
    Westöö, A.
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatric Medicine in Norrköping.
    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 East Östergötland, Department of Geriatric Medicine in Norrköping.
    The Ambulatory Geriatric Assessment - a Frailty Intervention Trial (AGe-FIT) - A randomised controlled trial aimed to prevent hospital readmissions and functional deterioration in high risk older adults: A study protocol2013In: European Geriatric Medicine, ISSN 1878-7649, E-ISSN 1878-7657, Vol. 4, no 4, p. 242-247Article in journal (Refereed)
    Abstract [en]

    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.

  • 29.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric Medicine.
    Anhörigas erfarenhet av palliativ hemsjukvård av cancersjuka - ett salutogent perspektiv2004In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 101, p. 550-550Article in journal (Other academic)
  • 30.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Anhörigas erfarenheter av palliativ hemsjukvård2006In: Incitament, ISSN 1103-503X, Vol. 6, p. 331-333Article in journal (Other (popular science, discussion, etc.))
  • 31.
    Milberg, Anna
    Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
    Family members' experience of palliative home care2003Doctoral thesis, comprehensive summary (Other academic)
    Abstract [en]

    The presence of a family member is often a prerequisite for successful palliative home care. The overall aim of this thesis was to contribute to a deeper understanding of family members' experiences of having a dying relative or friend cared for by advanced palliative home care. Two methodological approaches were used. Semi-structured tape-recorded interviews were analysed with a hermeneutic approach (19 family members; 30 interviews). Two postal questionnaires with open-ended questions were distributed and the responses (217 and 233, respectively) were analysed with qualitative and quantitative content analyses.

    All studies had a salutogenic orientation, i.e. with the origin of health in focus, and therefore facilitating as well as burdensome aspects were studied. In the interview studies, Antonovsky's salutogenic theory of Sense of coherence was applied as a framework, and the concepts of comprehensibility, manageability and meaningfulness were used.

    The studies showed that when the family members evaluated the palliative home care, they mentioned both positive and negative aspects with regard to the service, e.g. accessibility and staff competence, and comfort factors, e.g. feeling secure and being at the centre of attention.

    Comprehensibility concerned more than traditional information-giving and included symbols, basic life assumptions and previous knowledge, which were important for creating an inner congruent reality, as opposed to an inner chaos.

    Staff - family member interactions contributed to manageability by facilitating the family member's feeling of sharing the responsibility and contributing to the care together with the staff.

    Having a dying relative of friend could include also feelings of meaningfulness in an otherwise burdensome situation. Participating in the care, feeling hope, knowing that the patient did not suffer and doing the best possible had contributed to a feeling of meaningfulness.

    Of the family members, 36% had experienced powerlessness and/or helplessness, whereas 33% stated that they had never had such feelings during the palliative home care period. The feelings were characterised by perception of the patient's suffering, his/her fading away, and a feeling of own insufficiency. Moreover, the meaning of powerlessness and helplessness involved a deeper level including feelings of guilt, anger and loneliness.

    It is concluded that a salutogenic perspective is relevant in palliative home care. When staff interacts with family members in palliative care, there is a potential for facilitating the family members' perception of manageability, comprehensibility and meaningfulness. Understanding of home as a place of palliative care seems important and includes the contribution of a familiar environment, retained everyday life and of a basis for self-transcendence. Staff needs also to be aware of the risk of negative aspects, such as lost privacy and changed meaning of the home. Higher abstraction levels, including existential dimensions, such as security and powerlessness were essential parts of the family members' experiences. If such experiences are not considered in goal-setting and in service evaluation, important parts of palliative care will not be reflected by the chosen/measured parameters.

    List of papers
    1. Advanced palliative home care: next-of-kin's perspective
    Open this publication in new window or tab >>Advanced palliative home care: next-of-kin's perspective
    2003 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 6, no 5, p. 749-756Article in journal (Refereed) Published
    Abstract [en]

    Goals: (1) To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2) to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size.

    Subjects and methods: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed.

    Main results: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings.

    Conclusions: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-25273 (URN)10.1089/109662103322515257 (DOI)9713 (Local ID)9713 (Archive number)9713 (OAI)
    Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
    2. Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers
    Open this publication in new window or tab >>Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers
    2004 (English)In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 13, no 9, p. 605-618Article in journal (Refereed) Published
    Abstract [en]

    The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-24730 (URN)10.1002/pon.774 (DOI)6980 (Local ID)6980 (Archive number)6980 (OAI)
    Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
    3. Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin
    Open this publication in new window or tab >>Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin
    2003 (English)In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 1, no 2, p. 171-180Article in journal (Refereed) Published
    Abstract [en]

    Objective: An increasing number of patients are cared for at home and the presence of next of kin is often a prerequisite for successful home care. The aim of this study was to describe and interpret the construct of meaningfulness in next of kin of cancer patients who are in advanced palliative home care.

    Methods: The perspective of Antonovsky's salutogenic framework of sense of coherence was applied in the analysis. Using a hermeneutic approach, 19 next of kin were interviewed (n = 30 interviews) during ongoing palliative home care.

    Results: Elements that facilitated meaningfulness included comfort, retaining everyday life, action, commitment, and hope, which were of great importance for creating a perception of self-transcendence and that the best possible was done.

    Significance of results: The findings are discussed in relation to the concepts of meaning-based coping, tragic optimism, and existentialism. Clinical implications are suggested.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-25274 (URN)10.1017/S1478951503030311 (DOI)9714 (Local ID)9714 (Archive number)9714 (OAI)
    Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
    4. Next of kin’s experience of powerlessness and helplessness in palliative home care
    Open this publication in new window or tab >>Next of kin’s experience of powerlessness and helplessness in palliative home care
    2004 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 12, no 2, p. 120-128Article in journal (Refereed) Published
    Abstract [en]

    Goals of work  Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications.

    Patients and methods  The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3–9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis.

    Main results  Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kins perception of the patients suffering, of the patients fading away and the next of kins own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness.

    Conclusions  The main findings provide tools for the practitioner to identify situations contributing to next of kins sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans search for action.

    National Category
    Medical and Health Sciences
    Identifiers
    urn:nbn:se:liu:diva-23726 (URN)10.1007/s00520-003-0569-y (DOI)3233 (Local ID)3233 (Archive number)3233 (OAI)
    Available from: 2009-10-07 Created: 2009-10-07 Last updated: 2017-12-13Bibliographically approved
  • 32.
    Milberg, Anna
    Linköping University, Department of Social and Welfare Studies. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Forskarutbildningens mål: är kunskapssynens utveckling förbisedd2006Report (Other academic)
    Abstract [sv]

    Att tydlig målformulering är en framgångsfaktor när det gäller att genomföra projekt är väl känt. Under en kurs i forskarhandledning fick jag chansen att fundera kring detta. Vad är målet med forskarutbildning? Det vill säga vad är det för lärandeprocesser som man som handledare ska sträva efter att stödja? Det kan i förstone tyckas vara en banal fråga, skriva en avhandling och utbilda en doktor, men funderar man närmare så finns det olika svar på denna fråga beroende på vilket perspektiv man utgår ifrån och alla mål är inte tydliga.

    ¨Jag började med att fundera över min egen forskarutbildning och vad målet med den hade varit. Det första som dök upp i mina tankar var att jag lärt mig mycket om det specifika ämnet jag studerade (anhörigas upplevelse av palliativ hemsjukvård), om forskarhantverket (om olika analysmetoder, hur man skriver artiklar och presenterar resultat). Vid en djupare analys så upplevde jag att den största förändringen för min personliga del nog var att min syn på kunskap förändrats. Syfte med denna essä är därför att belysa kunskapssynens utveckling som mål i dagens forskarutbildning.

  • 33.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Östergötlands Läns Landsting, MC - Medicincentrum, Geriatrik-LAH.
    Hur lär man på föreläsningar2003In: CUL Rapport,2003, 2003, p. 103-110Conference paper (Refereed)
  • 34.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Palliativ medicin2005 (ed. 3)Book (Other academic)
  • 35.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Palliativ medicin2005 (ed. 3)Book (Other academic)
  • 36.
    Milberg, Anna
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Östergötlands Läns Landsting, MC - Medicincentrum, Geriatrik-LAH.
    Så skapar anhöriga en känsla av sammanhang i palliativ vård. Läkaren som informatör, tröstare och advokat2003In: Rapport i PALL-Bladet,2003, 2003Conference paper (Refereed)
  • 37.
    Milberg, Anna
    et al.
    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 East Östergötland, Center of Palliative Care. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Appelquist, Gudrun
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland.
    Hagelin, Eva
    Östergötlands Läns Landsting, Local Health Care Services in West Östergötland.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Olsson, Eva-Carin
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Medical and Health Sciences, Nursing Science.
    Olsson, Maria
    Northern County of Kalmar.
    Friedrichsen, Maria
    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 East Östergötland, Center of Palliative Care.
    "A rewarding conclusion of the relationship": staff members' perspectives on providing bereavement follow-up2011In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 19, no 1, p. 37-48Article in journal (Refereed)
    Abstract [en]

    GOALS OF WORK: Staff members in palliative home care play an important role in supporting bereaved family members. The aim of this study was to explore staff members' perspectives on providing such support.

    MATERIAL AND METHODS: Staff members in six units responded (n = 120; response rate 58%) to a postal questionnaire with Likert-type and open-ended questions. The responses were analyzed using statistics and manifest content analysis.

    MAIN RESULTS: None of the respondents stated that bereavement follow-up was "most often difficult," 23% "most often rather difficult," 52.5% "most often rather easy," and 12.5% "most often easy." Apart from a tendency for age to be linked to perceived difficulty, there were no apparent patterns. Bereavement follow-up was a positive opportunity to support the family member's coping with their bereavement and to get feedback on the palliative care provided. Critical aspects concerned the question of whose needs actually were being met at bereavement follow-up, i.e., the staff members' needs for getting feedback on the care provided versus the risk of burdening the family members' by reminding them of the deceased's dying trajectory. Aspects that negatively influenced the staff members' experiences were complex and related, e.g., to the family member's dissatisfaction with the care provided, to the staff member's perceived lack of competence, and to the staff member's relationship to the family member.

    CONCLUSIONS: Bereavement follow-up was perceived as a rewarding conclusion to the relationship with the family member. The findings suggest that meaning-based coping might be an appropriate framework when understanding staff members' experiences with providing bereavement follow-up.

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  • 38.
    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.

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  • 39.
    Milberg, Anna
    et al.
    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 Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Friedrichsen, Maria
    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 East Östergötland, Center of Palliative Care.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Nilsson, Eva-Carin
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Health Sciences.
    Niskala, Birgitta
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Primary Health Care in Central County.
    Olsson, Maria
    Northern County of Kalmar, Oskarshamn, Sweden.
    Wahlberg, Rakel
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Advanced Home Care in Linköping.
    Krevers, Barbro
    Linköping University, Department of Medical and Health Sciences, Division of Health Care Analysis. Linköping University, Faculty of Health Sciences.
    Patients Sense of Security During Palliative Care-What Are the Influencing Factors?2014In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 48, no 1, p. 45-55Article in journal (Refereed)
    Abstract [en]

    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.

  • 40.
    Milberg, Anna
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Helander, Lena
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Department of Health and Society, Division of Physiotherapy.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies.
    Rudstrand, Kristina
    Participants' experiences of a support group intervention for family members during ongoing palliative home care2005In: Journal of Palliative Care, ISSN 0825-8597, Vol. 21, no 4, p. 277-284Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe family members' experiences of participation in a support group intervention during ongoing palliative home care. Four taped-recorded focus group interviews were conducted (in total, 13 persons) and a questionnaire was completed by 19 of 22 possible family members. The participants experienced increased perception of support and knowledge, and would recommend that a person in a similar situation join a support group. Categories that emerged in the qualitative content analysis concerned "reasons for support group participation", "group composition contributed to group cohesion", "experience and sensitivity of group leader was a catalyst", "meaningful dialogue helped to solve everyday problems", "sense of cohesion increased effectiveness of the group", and "group sessions and post-session reflection increased perception of inner strength". Support groups for family members seem to be a valuable contribution during ongoing palliative home care. The findings are discussed in relation to recruitment into and ending of support groups. © 2005 Centre for Bioethics, IRCM.

  • 41.
    Milberg, Anna
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies. Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Karlsson, Marit
    Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Central County Primary Health Care.
    Icke-terapeutisk ventilation: Långsiktiga konsekvenser för anhöriga måste också belysas2005In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 102, p. 2002-2003Article in journal (Other (popular science, discussion, etc.))
  • 42.
    Milberg, Anna
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Olsson, Eva-Carin
    LAH, US, Linköping Landstinget i Östergötland.
    Jakobsson, Maria
    Linnéa-enheten, Vrinnevisjukhuset, Norrköping Landstinget i Östergötland.
    Olsson, Maria
    PRIVO Palliativt rådgivningsteam, Lasarettet i Oskarshamn Landstinget i Kalmar län.
    Friedrichsen, Maria
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Geriatrics and Hospital based homecare VHN.
    Family Members' Perceived Needs for Bereavement Follow-Up2008In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 35, no 1, p. 58-69Article in journal (Refereed)
    Abstract [en]

      

  • 43.
    Milberg, Anna
    et al.
    Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden.
    Exploring comprehensibility and manageability in palliative home care: an interview study of dying cancer patients' informal carers2004In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 13, no 9, p. 605-618Article in journal (Refereed)
    Abstract [en]

    The presence of an informal carer is often a prerequisite for successful palliative home care, and the staff's ability to support informal carers' coping in such situations is important. Recent research has revealed that it is possible to achieve positive psychological states in palliative care despite the burdening situation. As there is a lack of theory-based coping studies, the aim of this study was to describe, within the context of palliative home care, two concepts in Antonovsky's theory of Sense of Coherence: comprehensibility (a perception that the challenge is understood) and manageability (a perception that the resources to cope are available). Tape-recorded semi-structured interviews with 19 informal carers during ongoing palliative home care were transcribed and analysed with a qualitative hermeneutic approach. Elements that facilitated comprehensibility included open information, symbolic information, basic life assumptions and previous knowledge. These were important for creating a congruent inner reality (as opposed to chaos). Resources contributing to manageability dealt with power, support, competence and accessibility, which on a more abstract level resulted in a feeling of togetherness (as opposed to isolation). The findings are discussed in relation to the complexity of communication between staff and carers within palliative care.

  • 44.
    Milberg, Anna
    et al.
    Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Karolinska Institutet and FoUU Stockholms sjukhem, Stockholm, Sweden.
    Meaningfulness in palliative home care: an interview study of dying cancer patients' next of kin2003In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 1, no 2, p. 171-180Article in journal (Refereed)
    Abstract [en]

    Objective: An increasing number of patients are cared for at home and the presence of next of kin is often a prerequisite for successful home care. The aim of this study was to describe and interpret the construct of meaningfulness in next of kin of cancer patients who are in advanced palliative home care.

    Methods: The perspective of Antonovsky's salutogenic framework of sense of coherence was applied in the analysis. Using a hermeneutic approach, 19 next of kin were interviewed (n = 30 interviews) during ongoing palliative home care.

    Results: Elements that facilitated meaningfulness included comfort, retaining everyday life, action, commitment, and hope, which were of great importance for creating a perception of self-transcendence and that the best possible was done.

    Significance of results: The findings are discussed in relation to the concepts of meaning-based coping, tragic optimism, and existentialism. Clinical implications are suggested.

  • 45.
    Milberg, Anna
    et al.
    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 Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm.
    Protection against perceptions of powerlessness and helplessness during palliative care: The family members' perspective.2011In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 9, no 3, p. 251-262Article in journal (Refereed)
    Abstract [en]

    Objective:Resilience in relation to coping with stress, loss, and bereavement has recently received increased attention. The aim of the current study was to describe aspects that are experienced as a protection against powerlessness and/or helplessness during advanced palliative home care (APHC) or as a help when coping with such perceptions.Method:Both family members during ongoing APHC and family members 3-9 months after the patient's death responded (in total, N = 233; response rate 72%) to a postal questionnaire with mainly open-ended questions. The text responses were analyzed using Manifest Content Analysis.Results:Protection against powerlessness and helplessness had been facilitated by a stable patient condition, the patient coping well, a trusting relationship with the patient, practical and emotional support from family and friends, access to palliative expertise, and staff support that was both individually-focused and cooperative. Other aspects that had helped or protected family members against powerlessness and helplessness were a belief that they had their own reliable knowledge to manage the difficult situation, talking to someone, doing good for the patient, distracting activities, acceptance, meaning and hope, and an inner feeling of security.Significance of results:The findings are discussed in relation to existential psychology, the dual process model of coping with bereavement, and repressive coping. Clinical implications are suggested.

  • 46.
    Milberg, Anna
    et al.
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Social and Welfare Studies, Äldre - vård - civilsamhälle (ÄVC) . Östergötlands Läns Landsting, Local Health Care Services in Central Östergötland, Department of Geriatric and Hospital Based Homecare UHL.
    Strang, Peter
    Karolinska institutet.
    What to do when 'there is nothing more to do'? A study within a salutogenic framework of family members' experience of palliative home care staff2007In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 16, no 8, p. 741-51Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to develop a theoretical framework of family members' experience of palliative home care staff based on a secondary analysis of four previous studies. A salutogenic framework was used, i.e. with the origin of health in focus. Data had been collected (semi-structured tape-recorded interviews and postal questionnaires with open-ended questions) from 469 family members of mainly cancer patients referred to advanced palliative home care. Walker and Avant's strategies for theory construction were used. The secondary analysis generated three theoretical blocks: (1) general components of staff input (including five generalized resistance resources (GRRs): competence, support, spectrum of services, continuity, and accessibility); (2) specific interactions with staff (including two GRRs: being in the centre and sharing caring); (3) emotional and existential consequences of staff support (including six health-disease continuums: security-insecurity, hope-hopelessness, congruent inner reality-chaos, togetherness-isolation, self-transcendence-feelings of insufficiency and retained everyday life-disrupted everyday life). It seems important that all three aspects of family members' experience of palliative care staff are to be considered in evaluations of palliative care, in goal-setting and in teaching role models. The study is specific to the Swedish model of palliative home care and replication of the work in other countries is recommended.

  • 47.
    Milberg, Anna
    et al.
    Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden.
    Carlsson, Maria
    Department of Public Health and Caring Sciences, Section of Caring Sciences, Uppsala, Sweden.
    Börjesson, Susanne
    PAH Team, Falu Hospital, Falun, Sweden.
    Advanced palliative home care: next-of-kin's perspective2003In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 6, no 5, p. 749-756Article in journal (Refereed)
    Abstract [en]

    Goals: (1) To describe what aspects are important when next-of-kin evaluate advanced palliative home care (APHC) and (2) to compare the expressed aspects and describe eventual differences among the three settings, which differed in terms of length of services, geographic location, and population size.

    Subjects and methods: Four to 7 months after the patient's death (87% from cancer), 217 consecutive next-of-kin from three different settings in Sweden responded (response rate 86%) to three open-ended questions via a postal questionnaire. Qualitative content analysis was performed.

    Main results: Service aspects and comfort emerged as main categories. The staff's competence, attitude and communication, accessibility, and spectrum of services were valued service aspects. Comfort, such as feeling secure, was another important aspect and it concerned the next-of-kin themselves, the patients, and the families. Additionally, comfort was related to interactional issues such as being in the center and sharing caring with the staff. The actual place of care (i.e., being at home) added to the perceived comfort. Of the respondents, 87% described positive aspects of APHC and 28% negative aspects. No major differences were found among the different settings.

    Conclusions: Next-of-kin incorporate service aspects and aspects relating to the patient's and family's comfort when evaluating APHC. The importance of these aspects is discussed in relation to the content of palliative care and potential goals.

  • 48.
    Milberg, Anna
    et al.
    Linköping University, Department of Neuroscience and Locomotion, Geriatrics. Linköping University, Faculty of Health Sciences.
    Strang, Peter
    Karolinska Institutet, FoUU, Stockholms Sjukhem, Stockholm, Sweden.
    Jakobsson, Maria
    LAH Linnea-enheten, Vrinnevisjukhuset, Norrköping, Sweden.
    Next of kin’s experience of powerlessness and helplessness in palliative home care2004In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 12, no 2, p. 120-128Article in journal (Refereed)
    Abstract [en]

    Goals of work  Powerlessness and helplessness have been very little studied. The aims of this study were (1) to describe what characterise such experiences and the meaning of them to next of kin of cancer patients in advanced palliative home care and (2) to make quantifications.

    Patients and methods  The study design was cross-sectional and targeted next of kin during ongoing palliative home care and next of kin of patients who had died 3–9 months earlier; 233 next of kin responded (response rate 72%) to a postal questionnaire with both Likert-type and open-ended questions. The text responses were analysed with a combined qualitative and quantitative content analysis.

    Main results  Thirty-six percent of respondents stated that they had experienced powerlessness and/or helplessness every day or several times per week, whereas 33% had never had this experience during the palliative home care period. Powerlessness and helplessness concerned next of kins perception of the patients suffering, of the patients fading away and the next of kins own feelings of insufficiency and resulted in both physical and psychological symptoms, such as muscle tension, headache, loss of appetite, anxiety and depression. In addition, powerlessness and helplessness concerned also a deeper meaning with existential and social aspects, such as feelings of guilt, anger and loneliness.

    Conclusions  The main findings provide tools for the practitioner to identify situations contributing to next of kins sense of powerlessness and helplessness. The findings are discussed in relation to the concepts of symptom control, communication of awareness and humans search for action.

  • 49.
    Milberg, Anna
    et al.
    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 Advanced Home Care in Linköping. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Wåhlberg, Rakel
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of LAH/Linnéa.
    Jakobsson, Maria
    Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Olsson, Eva-Carin
    Linköping University, Department of Medical and Health Sciences, Nursing Science. Linköping University, Faculty of Health Sciences.
    Olsson, Maria
    PRIVO/Palliative Consulting Team, Northern County of Kalmar, Oskarshamn.
    Friedrichsen, Maria
    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 East Östergötland, Center of Palliative Care.
    What is a “secure base” when death is approaching? A study applying attachment theory to adult patients’ and family members’ experiences of palliative home care2012In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 21, no 8, p. 886-895Article in journal (Refereed)
    Abstract [en]

    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.

  • 50.
    Milberg, Anna
    et al.
    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 East Östergötland, Center of Palliative Care. Östergötlands Läns Landsting, Local Health Care Services in East Östergötland, Department of Advanced Home Care in Norrköping.
    Wåhlberg, Rakel
    Östergötlands Läns Landsting, 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 Health Sciences.
    Patients' sense of support within the family in the palliative care context: what are the influencing factors?2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 12, p. 1340-1349Article in journal (Refereed)
    Abstract [en]

    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.

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