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  • 1.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Årestedt, Kristofer
    Linnéuniversitetet & Region Kalmar län.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Capio Palliativ vård Dalen.
    Associations between Predeath and Postdeath Grief in Family Caregivers in Palliative Home Care.2019In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740Article in journal (Refereed)
    Abstract [en]

    Background: Family caregivers in palliative care may be placed in a complicated emotional situation wherein they suffer the risk of grief reactions both pre- and postbereavement and may also experience symptoms of anxiety and depression. Objective: The aim of this study was to investigate (1) associations between predeath grief and postdeath grief and (2) whether these are moderated by symptoms of anxiety and depression. Design: This was a prospective correlational study. Linear regression analysis in three blocks was used to investigate associations between pre- and postdeath grief and moderation effects of anxiety and depression. Postdeath grief was used as the outcome variable and predeath grief was used as the explanatory variable in block I. The moderator variables, symptoms of anxiety, and symptoms of depression were added as covariates in block II. A multiplicative interaction term between predeath grief and anxiety/depression was added to the model in block III. Setting/Subjects: Data were collected at 10 facilities specialized in palliative home care where health care professionals provided advanced care to patients with various diagnoses in their own homes. Measurements: The anticipatory grief scale and the Texas Revised Inventory of Grief were used to measure pre- and postdeath grief, respectively. To measure symptoms of anxiety and depression, the Hospital Anxiety and Depression scale was used. Results: A total of 128 family caregivers were included. Significant associations were found between predeath grief and postdeath grief and this association remained when controlled against symptoms of anxiety or depression. We found no moderation effect of anxiety or depression on the association between pre- and postdeath grief. Conclusions: In conclusion, grief before and after an expected death can be regarded as parts of the same grief process. Hence, knowing the intensity of predeath grief could be a way to predict the levels of postdeath grief.

  • 2. Jakobsson, E
    et al.
    Bergh, I
    Gaston-Johansson, F
    Stolt, C-M
    Öhlén, Joakim
    Göteborgs universitet.
    The turning point: clinical identification of dying and reorientation of care2006In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 9, no 6, p. 1348-58Article in journal (Refereed)
  • 3.
    Klarare, Anna
    et al.
    Karolinska institutet & Sophiahemmet Högskola.
    Lundh Hagelin, Carina
    Karolinska institutet & Sophiahemmet Högskola.
    Fürst, Carl Johan
    Karolinska institutet & Lunds universitet.
    Fossum, Bjöörn
    Karolinska institutet & Sophiahemmet Högskola.
    Team interactions in specialized palliative care teams: a qualitative study2013In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 16, no 9, p. 1062-1069Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned.

    AIM: The aim was to explore team interaction among team members in specialized palliative care teams.

    DESIGN: Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. Setting/participants: Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included.

    RESULTS: Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care.

    CONCLUSION: Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers.

  • 4. Lindqvist, Olav
    et al.
    Lundquist, Gunilla
    Dickman, Andrew
    Bükki, Johannes
    Lunder, Urska
    Hagelin, Carina Lundh
    Stiftelsen Stockholms sjukhem, Karolinska institutet, Sophiahemmet högskola.
    Rasmussen, Birgit H
    Sauter, Sylvia
    Tishelman, Carol
    Fürst, Carl Johan
    Four essential drugs needed for quality care of the dying: a Delphi-study based international expert consensus opinion.2013In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 16, no 1, p. 38-43Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care.

    MATERIAL AND METHODS: Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness.

    RESULTS: Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤ 5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥ 80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs.

    CONCLUSION: Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.

  • 5.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Nyberg, Tommy
    Karolinska Institutet. Storbritannien.
    Eilegård Wallin, Alexandra
    Högskolan Dalarna.
    Prigerson, Holly G
    USA.
    Steineck, Gunnar
    Karolinska Institutet, Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Care at End of Life Influences Grief: A Nationwide Long-Term Follow-Up among Young Adults Who Lost a Brother or Sister to Childhood Cancer.2018In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 21, no 2, p. 156-162Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: A majority of cancer-bereaved siblings report long-term unresolved grief, thus it is important to identify factors that may contribute to resolving their grief.

    OBJECTIVE: To identify modifiable or avoidable family and care-related factors associated with unresolved grief among siblings two to nine years post loss.

    DESIGN: This is a nationwide Swedish postal survey.

    MEASUREMENTS: Study-specific questions and the standardized instrument Hospital Anxiety and Depression Scale. Primary outcome was unresolved grief, and family and care-related factors were used as predictors.

    SETTING/PARTICIPANTS: Cancer-bereaved sibling (N = 174) who lost a brother/sister to childhood cancer during 2000-2007 in Sweden (participation rate 73%). Seventy-three were males and 101 females. The age of the siblings at time of loss was 12-25 years and at the time of the survey between 19 and 33 years.

    RESULTS: Several predictors for unresolved grief were identified: siblings' perception that it was not a peaceful death [odds ratio (OR): 9.86, 95% confidence interval (CI): 2.39-40.65], limited information given to siblings the last month of life (OR: 5.96, 95% CI: 1.87-13.68), information about the impending death communicated the day before it occurred (OR: 2.73, 95% CI: 1.02-7.33), siblings' avoidance of the doctors (OR: 3.22, 95% CI: 0.75-13.76), and lack of communication with family (OR: 2.86, 95% CI: 1.01-8.04) and people outside the family about death (OR: 5.07, 95% CI: 1.64-15.70). Depressive symptoms (OR: 1.27, 95% CI: 1.12-1.45) and time since loss (two to four years: OR: 10.36, 95% CI: 2.87-37.48 and five to seven years: OR: 8.36, 95% CI: 2.36-29.57) also predicted unresolved grief. Together, these predictors explained 54% of the variance of unresolved grief.

    CONCLUSION: Siblings' perception that it was not a peaceful death and poor communication with family, friends, and healthcare increased the risk for unresolved grief among the siblings.

  • 6. Raijmakers, Natasja
    et al.
    Galushko, Maren
    Domeisen, Franzisca
    Beccaro, Monica
    Lundh Hagelin, Carina
    Sophiahemmet högskola, Karolinska universitetet.
    Lindqvist, Olav
    Popa-Velea, Ovidiu
    Romotzky, Vanessa
    Schuler, Stefanie
    Ellershaw, John
    Ostgathe, Christoph
    Quality indicators for care of cancer patients in their last days of life: literature update and experts' evaluation.2012In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 15, no 3, p. 308-16Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Quality indicators (QIs) are needed to monitor and to improve palliative care. Care of patients in the last days of life is a discrete phase of palliative care and therefore specific QIs are needed. This study aimed to identify and evaluate current QIs against which to measure future care of patients in the last days of life.

    METHODS: To identify QIs for patients in the last days of life an update of the literature and national guidelines was conducted. Subsequently, an international panel of palliative care experts was asked to evaluate the identified QIs: how well they describe care and how applicable they are for care in the last days of life. Also additional QIs were asked.

    RESULTS: In total, 34 QIs for care in the last days were identified in the literature and guidelines. The experts (response rate 58%) agreed with seven QIs as being good descriptors and applicable: concerning a home visit for the family following a patient's death, the presence of a dedicated family room, limited patients receiving chemotherapy, limited need for pain control, gastrointestinal symptoms, and communication from professional to patient and family. The experts also suggested 18 additional topics for QIs for the last days of life.

    CONCLUSION: Currently no definite set of QIs exist to describe quality of care of patients in their last days of life. New QIs that are focused on care for patients in their last days of life, their relatives, as well as their professional caregivers are needed.

  • 7.
    Surkan, Pamela J
    et al.
    Karolinska institutet.
    Kreicbergs, Ulrika
    Karolinska institutet, Dana Farber Cancer Institute, USA..
    Valdimarsdóttir, Unnur
    Karolinska institutet.
    Nyberg, Ullakarin
    Karolinska institutet.
    Onelöv, Erik
    Karolinska institutet.
    Dickman, Paul W
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet.
    Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up.2006In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 9, no 2, p. 317-331Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Parental feelings of guilt can be a serious problem after the death of a child to a malignancy. This study identified predictors of feelings of guilt in parents during the year after a child's death.

    METHODS: The Swedish Cause of Death Register and Swedish Cancer Register were used to identify all parents in Sweden who had a child who died of a malignancy between 1992-1997.

    RESULTS: Among parents not reporting recent depression, those who were not confident that their child would immediately receive help from the staff in the hospital while he or she was sick with a malignancy (compared to those who felt partly or entirely sure, relative risk [RR] 4.0; 95% confidence interval [CI] 2.1-7.6), were at increased risk for reporting daily or weekly feelings of guilt in the year after the child's death. Parents who perceived that the staff in the pediatric cancer ward were incompetent were at increased risk (compared to parents reporting partial or total competence, RR 3.7; 95% CI 1.6-8.6). Compared to parents reporting that their children had moderate or much access, those who felt their children had little or no access to pain relief, dietary advice, anxiety relief, and relief of other psychological symptoms beside anxiety were at more than two times greater risk for reporting feelings of guilt.

    CONCLUSIONS: Bereaved parents' perceptions of inadequate health care were associated with subsequent feelings of guilt during the year following their child's death due to a malignancy.

  • 8.
    Udo, Camilla
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna,.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Bylund-Grenklo, Tove
    Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård, Dalen sjukhus Stockholm.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    A Nationwide Study of Young Adults' Perspectives on Participation in Bereavement Research.2019In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.

    AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.

    DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.

    SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.

    RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.

    CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.

  • 9.
    Årestedt, Kristofer
    et al.
    Linnéuniversitetet, Linköpings universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm.
    Boman, Kurt
    Umeå universitet.
    Öhlén, Joakim
    Göteborgs universitet.
    Goliath, Ida
    Karolinska institutet.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Fürst, Carl Johan
    Lunds universitet, Region Skåne.
    Brännström, Margareta
    Umeå universitet.
    Symptom Relief and Palliative Care during the Last Week of Life among Patients with Heart Failure: A National Register Study.2018In: 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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