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  • 1.
    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.

  • 2.
    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.

  • 3.
    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.

  • 4.
    Heedman, Per-Anders
    et al.
    Östergötlands Läns Landsting, Centre of Surgery and Oncology, Department of Oncology UHL.
    Starkhammar, Hans
    Linköping University, Faculty of Health Sciences. Linköping University, Department of Biomedicine and Surgery, Oncology. Östergötlands Läns Landsting, Centre of Surgery and Oncology, Department of Oncology UHL.
    Patterns of referral to a palliative care unit: An indicator of different attitudes toward the dying patient?2002In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 5, no 1, p. 101-106Article in journal (Refereed)
    Abstract [en]

    In 1996 a specialized palliative care unit was opened at the Link÷ping University Hospital in Sweden and different patterns of referral from different parts of the district soon became apparent. The aim of this study was to investigate the mechanisms underlying these patterns. During the first 6 months, 133 referrals were analyzed. The stated reason for referral and the actual content of care were, in each case, classified into five groups: symptom control, terminal care, rehabilitation, respite care, and special treatment and investigations. The stated reason for referral and the content of care coincided in three groups: terminal care, rehabilitation, and special treatment and investigations. When symptom control was the stated reason for referral, it was the main content of care in only 33 of 78 cases, while terminal care was the actual main content in 28 of 78 cases. Variations in patterns of referral were also observed in the different hospital-based home care teams (HBHC). In our study differences in the three HBHC teams regarding knowledge, skill, and attitudes might be reflected in variations in patterns of referral. The results illustrate the need for further education regarding referral indications, improvements in documentation of reason for referral, improved communication between HBHC teams and the palliative care unit, and improved prognostication at the end of life.

  • 5.
    Hjelmfors, Lisa
    et al.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    van der Wal, Martje H. L.
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. University of Groningen, Netherlands.
    Friedrichsen, Maria
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Local Health Care Services in East Östergötland, Center of Palliative Care.
    Martensson, Jan
    Jonköping University, Sweden.
    Strömberg, Anna
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Heart and Medicine Center, Department of Cardiology in Linköping.
    Jaarsma, Tiny
    Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Medicine and Health Sciences.
    Patient-Nurse Communication about Prognosis and End-of-Life Care2015In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 18, no 10, p. 865-871Article in journal (Refereed)
    Abstract [en]

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

  • 6.
    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.

  • 7.
    Wajda, Aldona
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Cardiovascular Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Respiratory Medicine.
    Engström, Helena
    Linköping University, Department of Medical and Health Sciences, Division of Cardiovascular Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Respiratory Medicine.
    Persson, Lennart
    Linköping University, Department of Medical and Health Sciences, Division of Cardiovascular Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Respiratory Medicine.
    Medical talc pleurodesis: which patient with cancer benefits least?2014In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 17, no 7, p. 822-828Article in journal (Refereed)
    Abstract [en]

    BACKGROUND AND OBJECTIVE:

    Successful talc pleurodesis (TP) for malignant pleural effusion (MPE) gives symptom relief, but may be too exhaustive in cases with poor performance status. The selection of eligible patients is therefore a challenging task. The study was undertaken to evaluate frequency of successful TPs, side effects, complications, performance status, hospitalization time, remaining time alive, and the responsible physician's prediction of a successful TP judged by radiologic findings prior to TP.

    METHODS:

    Side effects of TPs performed during a 1-year period were consecutively recorded and the TP outcomes were retrospectively evaluated 6 years later.

    RESULTS:

    TP success rate was 56% and 79% among best support of care subjects (BSC; n=10) and subjects eligible for cancer therapy (non-BSC; n=19), respectively, while side effects did not differ. Performance status was poorer and survival shorter among BSC subjects. Time spent in hospital of the remaining time alive for BSC and non-BSC subjects was 42%±27% and 4%±4%, respectively. Poor performance status of subjects with lung cancer correlated with short survival time, which in turn correlated with many days at hospital for TP. The physician's prediction of a successful TP was correct in 50% of all cases.

    CONCLUSIONS:

    Performance status of BSC subjects are probably too poor for TP and these subjects have to spend too much time at hospital during the procedure. The responsible physician is able to correctly predict a successful TP outcome in only every second case, supporting the need of additional predictive analysis.

  • 8.
    Årestedt, Kristofer
    et al.
    Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences. Linnaeus Univ, Sweden.
    Alvariza, Anette
    Ersta Skondal Bracke Univ Coll, Sweden; Dalens Hosp, Sweden.
    Boman, Kurt
    Res Unit, Sweden; Umea Univ, Sweden.
    Ohlen, Joakim
    Univ Gothenburg, Sweden.
    Goliath, Ida
    Karolinska Inst, Sweden.
    Håkanson, Cecilia
    Ersta Skondal Bracke Univ Coll, Sweden; Sophiahemmet Univ, Sweden.
    Furst, Carl Johan
    Lund Univ, Sweden; Reg Skåne, Sweden.
    Brännstrom, Margareta
    Umeå Univ, Sweden.
    Symptom Relief and Palliative Care during the Last Week of Life among Patients with Heart Failure: A National Register Study2018In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 21, no 3, p. 361-367Article in journal (Refereed)
    Abstract [en]

    Background: Heart failure is a disease with high morbidity, mortality, and physical and psychological burden. More knowledge about the care provided for patients with heart failure close to death is needed. Objective: The aim was to describe key aspects of palliative care during the last week of life in patients with heart failure, as reported by healthcare professionals. Design: This is a national register study. Setting/Subjects: The study included 3981 patients with diagnosed heart failure as the underlying cause of death. Measurements: Data were obtained from the Swedish Register of Palliative Care, a national quality register that focuses on patients last week of life, independent of diagnosis or care setting. The register includes information about care interventions connected with key aspects of palliative care. Data are reported retrospectively by a nurse or physician at the healthcare unit where the patient dies. Results: Only 4.2% of patients with heart failure received specialized palliative care. In their last week of life, symptom prevalence was high, validated scales were seldom used, and symptoms were unsatisfactorily relieved. Around one-fifth (17%) of the patients in the study died alone. Less than half of family members had been offered bereavement support (45%). Moreover, one-third (28%) of the patients and more than half (61%) of the family members were reported to have had end-of-life discussions with a physician during the illness trajectory. Conclusion: The results indicate inadequate palliative care for patients with heart failure during their last week of life.

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