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  • 1. Alvariza, Anette
    et al.
    Årestedt, Kristofer
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine. Umeå University, Arctic Research Centre at Umeå University.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University.
    Family members' experiences of integrated palliative advanced home and heart failure care: a qualitative study of the PREFER intervention2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 3, p. 278-285Article in journal (Refereed)
    Abstract [en]

    Objective: Chronic heart failure is a disease with high morbidity and symptom burden for patients, and it also places great demands on family members. Patients with heart failure should have access to palliative care for the purpose of improving quality of life for both patients and their families. In the PREFER randomized controlled intervention, patients with New York Heart Association classes III–IV heart failure received person-centered care with a multidisciplinary approach involving collaboration between specialists in palliative and heart failure care. The aim of the present study was to describe family members' experiences of the intervention, which integrated palliative advanced home and heart failure care.

    Method: This study had a qualitative descriptive design based on family member interviews. Altogether, 14 family members participated in semistructured interviews for evaluation after intervention completion. The data were analyzed by means of content analysis.

    Results: Family members expressed gratitude and happiness after witnessing the patient feeling better due to symptom relief and empowerment. They also felt relieved and less worried, as they were reassured that the patient was being cared for properly and that their own responsibility for care was shared with healthcare professionals. However, some family members also felt as though they were living in the shadow of severe illness, without receiving any support for themselves.

    Significance of results: Several benefits were found for family members from the PREFER intervention, and our results indicate the significance of integrated palliative advanced home and heart failure care. However, in order to improve this intervention, psychosocial professionals should be included on the intervention team and should contribute by paying closer attention and providing targeted support for family members.

  • 2.
    Andersson, Sofia
    et al.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Faculty of Health and Life Sciences, Linnaeus University, Växjö, Sweden.
    Granat, Lisa
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University.
    Sandgren, Anna
    Translation, Cultural Adaptation, and Content Validation of the Palliative Care Self-Efficacy Scale for Use in the Swedish Context2022In: International Journal of Environmental Research and Public Health, ISSN 1661-7827, E-ISSN 1660-4601, Vol. 19, no 3, article id 1143Article in journal (Refereed)
    Abstract [en]

    The Palliative Care Self-Efficacy Scale (PCSE) is a valid instrument in English for assessing healthcare professionals’ self-efficacy in providing palliative care; it has not been translated into Swedish. The aim of this study was to describe the translation, cultural adaptation, and contentvalidation process of the PCSE scale. In this study, forward and backward translations, pre-testingincluding an expert panel (n = 7), and cognitive interviewing with possible healthcare professionals (physicians, nurses, and assistant nurses) (n = 10) were performed. Experts in palliative care rateditems on a Likert scale based on their understandability, clarity, sensitivity, and relevance. The item-level content validity index (I-CVI) and modified kappa statistics were calculated. Healthcareprofessionals were interviewed using the think-aloud method. The translation and validation process resulted in the final version of the PCSE scale. The average I-CVI for sensitivity was evaluated andapproved. Most of the items were approved for clarity, some items lacked understandability, but a majority of the items were considered relevant. The healthcare professionals agreed that the items in the questionnaire evoked emotions, but were relevant for healthcare professionals. Thus, the Palliative Care Self-Efficacy scale is relevant for assessing healthcare professionals’ self-efficacy inpalliative care in a Swedish care context. Further research using psychometric tests is required.

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  • 3.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    The Institute for Palliative Care, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University.
    Care professional's experiences about using Liverpool Care Pathway in end-of-life care in residential care homes2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 299-308Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Residential care homes (RCHs) play an important role in end-of-life care, being the most common place of death for elderly people in several European countries. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve and ensure quality care at the end of life. There is a lack of scientific evidence supporting the use of care pathways.

    DESIGN: A descriptive qualitative study.

    OBJECTIVE: The aim was to describe care professionals' experiences of using the Liverpool Care Pathway for the Dying Patient in the care of dying residents in residential care homes.

    METHODS: Five focus group interviews and two individual interviews with enrolled nurses (n = 10), Registered Nurses (n = 9) and general practitioners (n = 5) were carried out and analysed using qualitative content analysis.

    RESULTS: Care professionals expressed that they became confident through a shared approach to care, were supported to tailor the care according to the residents' individual needs, were supported to involve family members in decision-making and care and became more aware of the care environment.

    CONCLUSION: The results of this study indicate that the LCP might be a useful tool for care professionals in improving end-of-life care in RCHs through increased attention to the goals of care, the individual needs of residents and family involvement.

  • 4.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    End-of-life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 1, p. 72-84Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care.

    OBJECTIVE: The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members.

    DESIGN: A retrospective survey design.

    METHODS: Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used.

    RESULTS: In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old.

    CONCLUSION: This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.

  • 5.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.
    Fürst, Carl-Johan
    The Institute for Palliative Care, Faculty of Medicine, Department of Clinical Science, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Family members' experiences of care of the dying in residential care homes where the Liverpool Care Pathway was used2018In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 24, no 4, p. 194-202Article in journal (Refereed)
    Abstract [en]

    Background: Residential care homes (RCHs) are increasingly becoming a common place of death for older people.

    Aim: The aim of this study was to describe family members' experiences of care of the dying in RCHs where the Liverpool care pathway for the dying patient was used.

    Methods: This study had a descriptive qualitative study design. Fifteen (n=15) individual interviews were analysed using qualitative content analysis.

    Results: The analysis resulted in three themes: being confident in a familiar and warm atmosphere, being involved vs not being involved in end-of-life (EoL) care, and being consoled by witnessing the health professional's endeavour to relieve suffering.

    Significance of results: The results indicated that taking part in a care plan seems to increase family members' feelings of involvement in EoL care. This study also highlights the family members' needs for increased possibilities for EoL discussions with the GP.

  • 6.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Martinsson, Lisa
    Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
    Fürst, Carl Johan
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    End-of-life discussions in residential care homes improves symptom control: a national register study2021In: BMJ Supportive & Palliative Care, ISSN 2045-435X, E-ISSN 2045-4368Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: In Europe, residential care homes (RCHs) rather than hospitals are the most common care facilities for the older adult and the place where most deaths occur in this age group. There is a lack of knowledge regarding end-of-life (EOL) discussions and how they correlate with symptoms and symptom relief.

    OBJECTIVE: The aim was to examine the correlation between EOL discussions and symptom occurrence, symptom relief and prescriptions or PRN drugs against symptoms for care home residents.

    METHODS: All expected deaths at RCHs from 1 October 2015 to 31 December 2016 and registered in the Swedish Register of Palliative Care were included. Univariate and multivariate logistic regression were used to compare the RCH residents, or their family members, who had received documented EOL discussions with a physician (the EOL discussion group) and the non-EOL discussion group.

    RESULTS: The EOL discussion group (n=17 071) had a higher prevalence of pain, nausea, anxiety, death rattles and shortness of breath reported, compared with the non-EOL discussion group (n=4164). Those with symptoms were more often completely relieved and had more often been prescribed PRN drugs against that symptom in the EOL discussion group. All differences remained significant when adjusting for age, time living in unit and cause of death.

    CONCLUSION: The results indicate that EOL discussions are correlated with higher prevalence of symptoms, but also with better symptom relief and prescription of symptom drugs PRN when symptomatic. A possible explanation for this is that the EOL discussion can work as an opportunity to discuss symptoms and treatment for symptom relief.

  • 7.
    Andersson, Sofia
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden.
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm.
    Fürst, Carl Johan
    The Institute for Palliative Care, Faculty of Medicine, Department of Clinical Science, Lund University and Region Skåne, Lund, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Arctic Research Centre at Umeå University. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg.
    Factors associated with symptom relief in end-of-life care in residential care homes: a national register-based study2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 5, p. 1304-1312Article in journal (Refereed)
    Abstract [en]

    Context: Residential care homes (RCHs) are a common place of death. Previous studies have reported a high prevalence of symptoms such as pain and shortness of breath among residents in the last week of life.

    Objectives: The aim of the study was to explore the presence of symptoms and symptom relief and identify factors associated with symptom relief of pain, nausea, anxiety, and shortness of breath among RCH residents in end-of-life care.

    Methods: The data consisted of all expected deaths at RCHs registered in the Swedish Register of Palliative Care (N = 22,855). Univariate and multiple logistic regression analyses were conducted.

    Results: Pain was reported as the most frequent symptom of the four symptoms (68.8%) and the one that most often had been totally relieved (84.7%) by care professionals. Factors associated with relief from at least one symptom were gender; age; time in the RCH; use of a validated pain or symptom assessment scale; documented end-of-life discussions with physicians for both the residents and family members; consultations with other units; diseases other than cancer as cause of death; presence of ulcers; assessment of oral health; and prescribed pro re nata injections for pain, nausea, and anxiety.

    Conclusion: Our results indicate that use of a validated pain assessment scale, assessment of oral health, and prescribed pro re nata injections for pain, nausea, and anxiety might offer a way to improve symptom relief. These clinical tools and medications should be implemented in the care of the dying in RCHs, and controlled trials should be undertaken to prove the effect.

  • 8. Blanck, E.
    et al.
    Fors, A.
    Ali, L.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Ekman, I.
    Being support for patients with chronic heart failure and/or chronic obstructive pulmonary disease - the relatives perspective2018In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 17, p. 98-99Article in journal (Other academic)
  • 9. Blanck, Elin
    et al.
    Fors, Andreas
    Ali, Lilas
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Ekman, Inger
    Informal carers in Sweden - striving for partnership2021In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 16, no 1, article id 1994804Article in journal (Refereed)
    Abstract [en]

    PURPOSE: Informal carers have an important role in society through their care and support of their long-term ill relatives. Providing informal care is challenging and can lead to caregiver burden; moreover, many support needs of the carers are not met, leading to confusion, disappointment and frustration. We conducted an interview study to clarify the meaning of support given and received by informal carers to relatives with chronic obstructive pulmonary disease or chronic heart failure.

    METHODS: We purposively selected and recruited informants via participants in another study, thereby conducting interviews over the phone from June 2016 to May 2017. In total, we conducted 14 interviews with 12 informants. All interviews were transcribed verbatim and the content was analysed using a phenomenological hermeneutical approach.

    RESULT AND CONCLUSION: Our comprehensive understanding of the meaning of support for these carers is twofold: it is a self-evident struggle for the good life of their relatives and that they want to be carers in partnership. The healthcare system must recognize the efforts of carers and include them in the strategic planning and operational stages of care and treatment for people with long-term illness.

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  • 10.
    Boman, Kurt
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Olofsson, Mona
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Bergman, Ann-Charlotte R.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Anaemia, but not iron deficiency, is associated with clinical symptoms and quality of life in patients with severe heart failure and palliative home care: a substudy of the PREFER trial2017In: European journal of internal medicine, ISSN 0953-6205, E-ISSN 1879-0828, Vol. 46, p. 35-40Article in journal (Refereed)
    Abstract [en]

    Background: To explore the relationships between anaemia or iron deficiency (ID) and symptoms, quality of life (QoL), morbidity, and mortality.

    Methods: A post-hoc, non-prespecified, explorative substudy of the prospective randomized PREFER trial. One centre study of outpatients with severe HF and palliative need managed with advanced home care. Associations between anaemia, ID, and the Edmonton Symptom Assessment Scale (ESAS), Euro QoL (EQ-5D), Kansas City Cardiomyopathy Questions (KCCQ) were examined only at baseline but at 6months for morbidity and mortality.

    Results: Seventy-two patients (51 males, 21 females), aged 79.2±9.1years. Thirty-nine patients (54%) had anaemia and 34 had ID (47%). Anaemia was correlated to depression (r=0.37; p=0.001), anxiety (r=0.25; p=0.04), and reduced well-being (r=0.26; p=0.03) in the ESAS; mobility (r=0.33; p=0.005), pain/discomfort (r=0.27; p=0.02), and visual analogue scale of health state (r=-0.28; p=0.02) in the EQ-5D; and physical limitation (r=-0.27; p=0.02), symptom stability; (r=-0.43; p<0.001); (r=-0.25; p=0.033), social limitation;(r=-0.26; p=0.03), overall summary score; (r=-0.24, p=0.046) and clinical summary score; (r=-0.27; p=0.02) in the KCCQ. ID did not correlate to any assessment item. Anaemia was univariably associated with any hospitalization (OR: 3.0; CI: 1.05-8.50, p=0.04), but not to mortality. ID was not significantly associated with any hospitalization or mortality.

    Conclusion: Anaemia, but not ID, was associated although weakly with symptoms and QoL in patients with advanced HF and palliative home care.

  • 11.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Omvårdnad.
    Att leva med svår kronisk hjärtsvikt i palliativ hemsjukvård: ett liv i berg och dalbana2007In: Primärvårdens Nyheter, no 11/12, p. 18-22Article in journal (Other (popular science, discussion, etc.))
  • 12.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Livet med svår hjärtsvikt2013In: Palliativ vård: begrepp & perspektiv i teori och praktik / [ed] Birgitta Andershed, Britt-Marie Ternerstedt, Cecilia Håkanson, Studentlitteratur AB, 2013, 1, p. 359-368Chapter in book (Other academic)
  • 13.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Omvårdnad.
    När livet går i berg- och dalbana2007In: Vårdfacket, Vol. 11, no 31, p. 63-Article in journal (Other (popular science, discussion, etc.))
  • 14.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Nursing.
    Björck, Martin
    Strandberg, Gunilla
    Umeå University, Faculty of Medicine, Nursing.
    Wanhainen, Anders
    Patients' experiences of being informed about having an abdominal aortic aneurysm: a follow-up case study five years after screening2009In: Journal of Vascular Nursing, ISSN 1062-0303, E-ISSN 1532-6578, Vol. 27, no 3, p. 70-74Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to describe patients' experiences 5 years after being informed about having an abdominal aortic aneurysm (AAA), at screening, in a subgroup of patients who suffered a decrease in quality of life (QoL) 12 months after screening. Of 6 patients with a decreased QoL 12 months after AAA screening, one had died, one declined to participate and one suffered cognitive problems and was therefore excluded. The remaining 3 patients (all men, aged 79-80 years) were interviewed in their homes. The interviews were analysed using thematic content analysis. The result shows that the patients have feelings of security about offered professional care, despite awareness of having an AAA. These feelings include having a relationship of trust with the surgeon; having trust in screening, follow-up checks and the possible treatment for their AAAs; and having awareness of the severity of the disease. Furthermore, the patients experience having an AAA to be symbolically 'like a drop in the ocean.' This means having no physical problems related to AAA, and having more difficulties with other diseases or problems in life overshadows the awareness about the AAA. An observed reduction in QoL among subjects with screening-detected AAA was mainly explained by other diseases or problems that overshadow the AAA. However, the low number of participants indicates a need for extended studies on this topic.

  • 15.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    A new model for integrated heart failure and palliative advanced homecare: rationale and design of a prospective randomized study2013In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 12, no 3, p. 269-275Article in journal (Refereed)
    Abstract [en]

    Background: Guidelines have concluded that there is a great need for new models of integrated care, e.g. heart failure and palliative care, in order to facilitate equality of care for dying patients, regardless of diagnosis. We found no evidence in the literature concerning the advantages and effects of integrated heart failure and palliative advanced home care for patients with severe chronic heart failure.

    Aim: The primary aim is to study the effects of integrated Palliative advanced homecarRE and heart FailurE caRE (PREFER) on patients' symptom burden, quality of life, and activities of daily living (ADL) as compared to usual care.

    Method: Prospective, randomized study with an open-evaluation PROBE design. Optimally treated outpatients with chronic heart failure of varying aetiologies in New York Heart Association classes III-IV will be eligible to participate.

    Conclusion: The PREFER study is designed to investigate whether a new concept of managing patients with severe chronic heart failure by integrating palliative homecare and active heart failure treatment will reduce symptom burden, increase quality of life and ADL, and reduce the number of hospitalizations in patients with severe chronic heart failure.

  • 16.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: a randomized controlled study2014In: European Journal of Heart Failure, ISSN 1388-9842, E-ISSN 1879-0844, Vol. 16, no 10, p. 1142-1151Article in journal (Refereed)
    Abstract [en]

    AimsWe evaluated the outcome of person-centred and integrated Palliative advanced home caRE and heart FailurE caRe (PREFER) with regard to patient symptoms, health-related quality of life (HQRL), and hospitalizations compared with usual care. Methods and resultsFrom January 2011 to October 2012, 36 (26 males, 10 females, mean age 81.9years) patients with chronic heart failure (NYHA class III-IV) were randomized to PREFER and 36 (25 males, 11 females, mean age 76.6years) to the control group at a single centre. Prospective assessments were made at 1, 3, and 6 months using the Edmonton Symptom Assessment Scale, Euro Qol, Kansas City Cardiomyopathy Questionnaire, and rehospitalizations. Between-group analysis revealed that patients receiving PREFER had improved HRQL compared with controls (57.619.2 vs. 48.524.4, age-adjusted P-value=0.05). Within-group analysis revealed a 26% improvement in the PREFER group for HRQL (P=0.046) compared with 3% (P=0.82) in the control group. Nausea was improved in the PREFER group (2.4 +/- 2.7 vs. 1.7 +/- 1.7, P=0.02), and total symptom burden, self-efficacy, and quality of life improved by 18% (P=0.035), 17% (P=0.041), and 24% (P=0.047), respectively. NYHA class improved in 11 of the 28 (39%) PREFER patients compared with 3 of the 29 (10%) control patients (P=0.015). Fifteen rehospitalizations (103days) occurred in the PREFER group, compared with 53 (305days) in the control group. ConclusionPerson-centred care combined with active heart failure and palliative care at home has the potential to improve quality of life and morbidity substantially in patients with severe chronic heart failure.

  • 17.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Nursing.
    Brulin, Christine
    Umeå University, Faculty of Medicine, Nursing.
    Norberg, Astrid
    Umeå University, Faculty of Medicine, Nursing.
    Boman, Kurt
    Umeå University, Faculty of Medicine, Public Health and Clinical Medicine, Medicine. Medicin.
    Strandberg, Gunilla
    Umeå University, Faculty of Medicine, Nursing.
    Being a palliative nurse for persons with severe congestive heart failure in advanced homecare.2005In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 4, no 4, p. 314-323Article in journal (Refereed)
    Abstract [en]

    Advanced homecare for persons with congestive heart failure is a ‘new’ challenge for palliative nurses. The aim of this study is to illuminate the meaning of being a palliative nurse for persons with severe congestive heart failure in advanced homecare. Narrative interviews with 11 nurses were conducted, tape-recorded, and transcribed verbatim. A phenomenological-hermeneutic method was used to interpret the text. One meaning of being a palliative nurse is being firmly rooted and guided by the values of palliative culture. Being adaptable to the patient's way of life carries great weight. On one hand nurses live out this value, facilitating for the patients to live their everydaylife as good as possible. Being a facilitator is revealed as difficult, challenging, but overall positive. On the other hand nurses get into a tight corner when values of palliative culture clash and do not correspond with the nurses interpretation of what is good for the person with congestive heart failure. Being in such a tight corner is revealed as frustrating and giving rise to feelings of inadequacy. Thus, it seems important to reflect critical on the values of palliative culture.

  • 18.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine. Department of Medicine-Geriatric, Skellefteå County Hospital, Sweden.
    Ekman, Inger
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine. Department of Medicine-Geriatric, Skellefteå County Hospital, Sweden.
    Strandberg, Gunilla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Being a close relative of a person with severe, chronic heart failure in palliative advanced home care: a comfort but also a strain2007In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 21, no 3, p. 338-344Article in journal (Refereed)
    Abstract [en]

    Within previous research on family care of terminally ill people, studies have only rarely been carried out concerning heart failure care. This study aims to illuminate meanings of being a close relative of a person with severe, chronic heart failure (CHF) in palliative advanced home care (PAHC). Narrative interviews were conducted with three close relatives, tape-recorded, transcribed verbatim and a phenomenological-hermeneutic method was used to interpret the text. Meanings of being a close relative is to follow the life-threatening ups and downs, the person with CHF is going through. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team, trusting their ability to show up on time to alleviate in the worst downs i.e. ease suffering. This study reveals that to be the close relative that the ill person is dependent on 24 hours a day is both a comfort and a strain.

  • 19.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Nursing.
    Ekman, Inger
    Boman, Kurt
    Umeå University, Faculty of Medicine, Public Health and Clinical Medicine, Medicine. Medicin.
    Strandberg, Gunilla
    Umeå University, Faculty of Medicine, Nursing.
    Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period.2007In: Contemporary Nurse, ISSN 1037-6178, Vol. 27, no 1, p. 10-22Article in journal (Refereed)
  • 20.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Nursing.
    Ekman, Inger
    Norberg, Astrid
    Umeå University, Faculty of Medicine, Nursing.
    Boman, Kurt
    Umeå University, Faculty of Medicine, Public Health and Clinical Medicine, Medicine. Medicin.
    Strandberg, Gunilla
    Umeå University, Faculty of Medicine, Nursing.
    Living with severe chronic heart failure in palliative advanced home care.2006In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 5, no 4, p. 295-302Article in journal (Refereed)
    Abstract [en]

    Background - Living with severe chronic heart failure (CHF) in palliative care has been little studied.

    Aim - The aim of this study is to illuminate meaning of living with severe CHF in palliative advanced home care through patients' narratives.

    Methods-Narrative interviews were conducted with 4 patients, tape-recorded and transcribed verbatim. A phenomenological–hermeneutic method was used to interpret the text.

    Results - Meaning of living with severe CHF in palliative advanced home care emerged as ‘knocking on death's door’ although surviving. The course of the illness forces one to live a ‘roller coaster life,’ with an ongoing oscillation between ups and downs. Making it through the downs breeds a kind of confidence in one's ability to survive and the will to live is strong. Being offered a safety belt in the ‘roller coaster’ by the palliative advanced home care team evokes feelings of security.

    Conclusions - Meaning of living with severe CHF in palliative advanced home care is on one hand, being aware of one's imminent death, on the other hand, making it through the downs i.e. surviving life-threatening conditions, breed confidence in also surviving the current down. Being constructively dependent on palliative advanced home care facilitates everyday life at home.

  • 21.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Institute of Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg, Sweden.
    Fischer Grönlund, Catarina
    Umeå University, Faculty of Medicine, Department of Nursing.
    Zingmark, Karin
    Söderberg, Anna
    Umeå University, Faculty of Medicine, Department of Nursing.
    Meeting in a 'free-zone': clinical ethical support in integrated heart-failure and palliative care2019In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 18, no 7, p. 577-583Article in journal (Refereed)
    Abstract [en]

    Background: Integrating heart-failure and palliative care combines expertise from two cultures, life-saving cardiology and palliative care, and involves ethically difficult situations that have to be considered from various perspectives. We found no studies describing experiences of clinical ethical support (CES) in integrated cardiology and palliative care teams.

    Objective: Our aim is to describe experiences of CES among professionals after a period of three years working in a multidisciplinary team in integrated heart-failure and palliative homecare.

    Method: The study design was descriptive qualitative, comprising interviews with seven professionals from one integrated heart-failure and palliative care team who received CES over a three-year period. The interview data were subjected to qualitative content analysis.

    Results: The CES was found to offer possibilities for meeting in an ethical ‘free-zone’ where the participants could relate to each other beyond their various professional roles and specialties. The trust within the team seemed to increase and the participants were confident enough to express their points of view. Together they developed an integrated understanding, and acquired more knowledge and a comprehensive view of the ethically difficult situation of concern. The CES sessions were considered a means of becoming better prepared to deal with ethical care issues and developing action strategies to apply in practice, from shared standpoints.

    Conclusion: Participating in CES was experienced as meeting in an ethical ‘free-zone’ and seemed to be a means of facilitating integration of palliative and heart-failure care.

  • 22.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Forssell, Anna
    Pettersson, Berit
    Physicians' experiences of palliative care for heart failure patients2011In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 10, no 1, p. 64-69Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Although heart disease is the single most common cause of death knowledge about palliative care for this group of patients is deficient.

    AIM: The aim of this study was to describe physicians' experiences of palliative care for heart failure patients.

    METHODS: Fifteen physicians at a medical geriatrics clinic were interviewed. The interviews were analysed using thematic content analysis.

    RESULTS: The results show that the physicians are confronted with patients with an unpredictable disease trajectory, including patients with severe symptoms, uncertainty about anticipating the course of dying and encountering close relative's anxiety and frustration. The physicians face difficult situations regarding whether to continue or withdraw care and medical treatment which means deciding concerning 'active' medical treatment, cardio pulmonary resuscitation and an implantable cardioverter-defibrillator (ICD). The physicians acknowledge the necessity for better structured follow-ups and cooperation with outpatient settings. They recognize that there is a lack of follow-ups and continuity of care and treatment at the hospital, involving their passing on or retaining responsibility for the patients' medical care.

    CONCLUSION: From the physicians' view clarification of who is principally responsible for the patient's medical care, being involved throughout the disease trajectory and cooperating more closely with palliative care services are necessary to further improve the way in which care is delivered to patients dying of heart failure.

  • 23.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Fürst, Carl Johan
    Tishelman, Carol
    Petzold, Max
    Lindqvist, Olav
    Umeå University, Faculty of Medicine, Department of Nursing. Medical Management Centre (MMC), Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study2016In: Palliative Medicine: A Multiprofessional Journal, ISSN 0269-2163, E-ISSN 1477-030X, Vol. 30, no 1, p. 54-63Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking.

    AIM: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients' symptom distress and well-being during the last days of life, in residential care homes.

    DESIGN: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient's death, using the Edmonton Symptom Assessment System and Views of Informal Carers - Evaluation of Services.

    SETTINGS/PARTICIPANTS: Patients who died at all 19 residential care homes in one municipality in Sweden.

    RESULTS: Shortness of breath (estimate = -2.46; 95% confidence interval = -4.43 to -0.49) and nausea (estimate = -1.83; 95% confidence interval = -3.12 to -0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers - Evaluation of Services item (estimate = -0.47; 95% confidence interval = -0.85 to -0.08).

    CONCLUSION: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.

  • 24.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Hägglund, Lena
    Umeå University, Faculty of Medicine, Department of Nursing.
    Fürst, Carl Johan
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Unequal care for dying patients in Sweden: a comparative registry study of deaths from heart disease and cancer2012In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 11, no 4, p. 454-459Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The Swedish Palliative Registry is a nationwide quality registry aimed at facilitating improvement in end-of-life care. The goal is for the registry to list and report quality indicators related to care during the last week of life in all cases expected death in Sweden.

    AIM: To examine the quality of care during the last week of life as reported to the registry for patients with heart disease compared to those with cancer.

    METHOD: A retrospective registry study.

    RESULTS: Patients dying of heart disease compared to those dying from cancer had more shortness of breath, fewer drugs prescribed as needed against the usual symptoms and often died alone. Furthermore, they and their close relatives received less information about the imminence of death and bereavement follow-up was less common. The healthcare personnel were less aware of the heart disease patients' symptoms and less often knew about where they wished to die.

    CONCLUSION: Great differences were found in registered end-of-life care suggesting that the care given to patients with heart disease and cancer was unequal even after adjustment for age, sex and setting at the time of death. If our observational findings are confirmed in future studies there is obviously a need for new models for end-of-life management in order to facilitate the provision of equal care to dying patients regardless of diagnosis.

  • 25.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Jaarsma, Tiny
    Faculty of Health Sciences, Linköping University.
    Struggling with issues about cardiopulmonary resuscitation (CPR) for end-stage heart failure patients2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 2, p. 379-385Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Integrating heart failure and palliative care teams combines unique expertise from both cardiology and palliative care. However, professionals from the two arenas of life-saving cardiology and palliative care may well have different experiences with and approaches to patient care. Little is known how to optimally discuss cardiopulmonary resuscitation with patients and their relatives and what challenges are for healthcare providers.

    OBJECTIVE: The aim of this study was to describe the experiences and thoughts of members of an integrated heart failure and palliative care team concerning talking about CPR with end-stage heart failure patients.

    METHOD: We used a descriptive qualitative design, conducting group interviews during 2011 with professionals from different disciplines working with heart failure patients over a 1-year period. A qualitative content analysis was performed to examine the interview data.

    RESULTS: Professional caregivers in integrated heart failure and palliative homecare are struggling with the issue of CPR of end-stage heart failure patients. They wrestle with the question of whether CPR should be performed at all in these terminally ill patients. They also feel challenged by the actual conversation about CPR with the patients and their relatives. Despite talking them about CPR with patients and relatives is difficult, the study participants described that doing so is important, as it could be the start of a broader end-of-life conversation.

    CONCLUSION: Talking with patient and relatives about CPR in end-stage heart failure, as suggested in the current heart failure guidelines, is a challenge in daily clinical practice. It is important to discuss the difficulties within the team and to decide whether, whom, how and when to talk about CPR with individual patients and their relatives.

  • 26.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing. Strategic Research Program in Health Care Sciences (SFO-V), "Bridging Research and Practice for Better Health", Karolinska institutet.
    Kristofferzon, Marja-Leena
    Ivarsson, Bodil
    Nilsson, Ulrica G
    Svedberg, Petra
    Thylén, Ingela
    Sexual Knowledge in Patients With a Myocardial Infarction and Their Partners2014In: Journal of Cardiovascular Nursing, ISSN 0889-4655, E-ISSN 1550-5049, Vol. 29, no 4, p. 332-339Article in journal (Refereed)
    Abstract [en]

    BACKGROUND:: Sexual health and sexual activity are important elements of an individual's well-being. For couples, this topic is often affected after a myocardial infarction (MI). It has become increasingly clear that, after an MI, patients are insufficiently educated on how to resume normal sexual activity. However, sufficient data on the general knowledge that patients and partners have about sexual activity and MI are lacking. OBJECTIVE:: The aims of this study were to explore and compare patients' and partners' sexual knowledge 1 month after a first MI and 1 year after the event and to compare whether the individual knowledge had changed over time. A second aim was to investigate whether patients and their partners report receiving information about sexual health and sexual activity from healthcare professionals during the first year after the event and how this information was perceived. SUBJECTS AND METHODS:: This descriptive, comparative survey study enrolled participants from 13 Swedish hospitals in 2007-2009. A total of 115 patients with a first MI and their partners answered the Sex After MI Knowledge Test questionnaire 1 month after the MI and 1 year after the event. Correct responses generated a maximum score of 75. RESULTS:: Only 41% of patients and 31% of partners stated that they had received information on sex and relationships at the 1 year follow-up. The patients scored 51 ± 10 on the Sex After MI Knowledge Test at inclusion into the study, compared with the 52 ± 10 score for the partners. At the 1-year follow-up, the patients' knowledge had significantly increased to a score of 55 ± 7, but the partners' knowledge did not significantly change (53 ± 10). CONCLUSIONS:: First MI patients and their partners reported receiving limited information about sexual issues during the cardiac rehabilitation and had limited knowledge about sexual health and sexual activity.

  • 27.
    Brännström, Margareta
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Niederbach, Camilla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Rödin, Ann-Charlotte
    Experiences of surviving a cardiac arrest after therapeutic hypothermia treatment: an interview study2018In: International Emergency Nursing, ISSN 1755-599X, E-ISSN 1878-013X, Vol. 36, p. 34-38Article in journal (Refereed)
    Abstract [en]

    Background: Cardiac arrest (CA) is often associated with high mortality. In Sweden, it is reported that 13–52 per 100,000 people suffer out-of-hospital CA, and survival to one month is 2–14%.

    Objective: This study aimed to describe people’s experiences of surviving a CA after therapeutic hypothermia treatment.

    Method: A descriptive qualitative design was used. Data were collected through individual interviews with seven CA survivors. The collected data were analyzed using qualitative content analysis.

    Results: The analysis resulted in six subthemes and three emerging themes. The themes were “Dealing with issues of mortality”, “Living a changed life”, and “Being confident with health care and family members”.

    Conclusion: Surviving a CA after therapeutic hypothermia treatment means having to deal with issues of mortality, and these patients face a turning point in life. The near-death event can create regression or progression in ethos among these patients.

    Relevance to clinical practice: This study implies that persons who have survived a CA need support to cope. One way to provide support might be to initially establish an individualized health care plan, including bringing up existential issues and involving family members in such conversations.

  • 28.
    Burström, Marianne
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Medicine.
    Strandberg, Gunilla
    Umeå University, Faculty of Medicine, Department of Nursing.
    Life experiences of security and insecurity among women with chronic heart failure2012In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 68, no 4, p. 816-825Article in journal (Refereed)
    Abstract [en]

    Aim. This paper is a report of a study illuminating womens experiences of living with chronic heart failure with a focus on feelings of security and insecurity.

    Background. To be secure is a basic human need. Although feelings of being insecure has been found to be a common problem among people who live with chronic heart failure few qualitative studies, particularly among women, have been carried out in the field.

    Method. Eight women took part in focus group interviews during 2006. The data were analysed using qualitative content analysis. Findings. The womens feelings of security include acceptance of the past, everyday life and the future, trusting the self and the body despite the disease, not having to deal with dependency alone, and faith in care and treatment. The womens feelings of insecurity include feeling guilty for being sick and incapacitated, fear of living with a frail and failing body, anxiety about growing dependence on others, loneliness and death and lack of faith in care and treatment.

    Conclusion. The outlook on the past, the present and the view about the future, can be fundamental for the quality of life, and the sense of security and insecurity among women living with chronic heart failure. To support a sense of security it seems essential that nursing staff attempt to understand the womens outlook on life and their personal interpretations of living with chronic heart failure. This can be crucial for enhancing feelings of security in daily life for these women.

  • 29. Ericsson, M.
    et al.
    Hellström Ängerud, Karin
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Cardiology. Umeå University, Faculty of Medicine, Department of Nursing.
    Sederholm Lawesson, S.
    Swahn, E.
    Stromberg, A.
    Isaksson, R. M.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    First medical contact in the pre-hospital phase of a myocardial infarction, the interaction between callers and tele-nurses impacts action and level of care2018In: European Heart Journal, ISSN 0195-668X, E-ISSN 1522-9645, Vol. 39, p. 1120-1120Article in journal (Other academic)
    Abstract [en]

    Background: Pre-hospital delay in myocardial infarction (MI) patients' is of great concern. The total ischemic time, i.e., between symptom onset and reperfusion therapy is the most important factor to achieve best possible outcome. One reason for patient delay is choice of first medical Contact (FMC), still not everyone contact the emergency medical services. A previous Swedish cross-sectional multicentre study found that every fifth patient with an evolving ST elevated MI (STEMI) contacted an advisement tele-nurse intended for non-life-threatening situations as FMC. This caused a median difference in delay of 38 min from symptom onset to diagnosis. Advisement tele-nursing is an expanding actor in the Swedish healthcare system, as in some other Western nations.

    Purpose: The aim was to explore the communication between tele-nurses and callers when MI patients called a national health advisement number as FMC.

    Method: This study had a qualitative approach. We received access to 30 authentic calls. The recordings lasted between 0:39 minutes to 16:44 minutes, transcribed verbatim and analysed with content analysis. The following questions were applied to the transcript: (1) How do the callers communicate their symptom and context (2) How do the tele-nurses respond and which level of care was directed (3) Do the callers get an advice and what action do they take.

    Result: One third of the callers were female, aged 46–89 years, six were diagnosed with NSTEMI and 24 with STEMI. All tele-nurses were females. The calls followed a structure of three phases, opening-, orienting- and end-phase. The first phase was non-interfered, where the caller communicated their context and/or symptoms and tele-nurses adopt an active listening position, followed by two interactive phases. Four categories defined the interaction in the communication, indecisive, irrational, distinct or reasoning. The different interactions illustrated how tele-nurses and callers assessed and elaborated upon symptom, context and furthermore expressed the process in the dialogue. Type of interaction was pivotal for progress in the call and had impact on the communicative process either sufficient in reaching a mutual understanding or not. An indecisive or irrational interaction could increase risk of acute care not being recommended. A non explicit explanation, why it is of importance to seek acute care could lead caller to ignore the advice.

    Conclusion: Both communicative and medical skills are needed to identify level of urgency. Our study suggests that the interaction in the communication categorised in four types, indecisive, irrational or distinct or reasoning can mislead level of care directed as well as a disability to express the need of acute care. This knowledge adds new perspective and hopefully will our findings be useful to deepen our knowledge in identifying MI patients and in a broader sense improve educational efforts and diminsh delay.

  • 30. Ericsson, Maria
    et al.
    Ängerud, Karin H.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Lawesson, Sofia S.
    Strömberg, Anna
    Thylén, Ingela
    Interaction between tele-nurses and callers with an evolving myocardial infarction: consequences for level of directed care2019In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 18, no 7, p. 545-553Article in journal (Refereed)
    Abstract [en]

    Background: Rapid contact with emergency medical services is imperative to save the lives of acute myocardial infarction patients. However, many patients turn to a telehealth advisory nurse instead, where the delivery of urgent and safe care largely depends on how the interaction in the call is established.

    Purpose: The purpose of this study was to explore the interaction between tele-nurses and callers with an evolving myocardial infarction after contacting a national telehealth advisory service number as their first medical contact.

    Method: Twenty men and 10 women (aged 46–89 years) were included. Authentic calls were analysed using inductive content analysis.

    Findings: One overall category, Movement towards directed level of care, labelled the whole interaction between the tele-nurse and the caller. Four categories conceptualised the different interactions: a distinct, reasoning, indecisive or irrational interaction. The interactions described how tele-nurses and callers assessed and elaborated on symptoms, context and actions. The interaction was pivotal for progress in the dialogue and affected the achievement of mutual understanding in the communicative process. An indecisive or irrational interaction could increase the risk of failing to recommend or call for acute care.

    Conclusion: The interaction in the communication could either lead or mislead the level of care directed in the call. This study adds new perspectives to the communicative process in the acute setting in order to identify a myocardial infarction and the level of urgency from both individuals experiencing myocardial infarction and professionals in the health system.

  • 31.
    Fischer Grönlund, Catarina
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Postgraduate nursing students’ experiences of practicing ethical communication2022In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 29, no 7-8, p. 1709-1720Article in journal (Refereed)
    Abstract [en]

    Background: Ethics communication has been described as a pedagogical form, promoting development of ethical competence among nursing students. The ‘one to five method’ was developed by this research group as a tool for facilitating ethical communication in groups among healthcare professionals but has not yet been evaluated.

    Aim: To explore post-graduate nursing students’ experiences of practicing ethical communication in groups.

    Research design: The study design is qualitative.

    Participants and research context: The study comprised 12 nursing students on a post-graduate course for Registered Nurses focusing on palliative care. After education the students engaged as participants and facilitators in ethics communication in groups, with support from the ‘one to five method’. Data were derived from the students written reflections and subjected to thematic analysis.

    Ethical considerations: The study was performed in accordance with the ethical standards in the 2013 Helsinki Declaration and approved by the Ethics Committee of the Medical Faculty at Umeå University.

    Results: An overall theme was identified, ‘being supported to achieve a democratic dialogue concerning ethical problems’ and five themes, related to each step of the ‘one to five method’. The themes concerned: putting the experience of an ethical dilemma into words; being confirmed by shared emotions; defining the value conflict using ethical principles; expressing virtues of empathy and raised awareness; jointly finding various action approaches.

    Discussion: Regular ethics communication in groups encourages nursing students to actively seek understanding and clarification of ethically difficult situations.

    Conclusions: The results indicate that ethics communication in groups could be a way of developing virtues during education. Interventions using the ‘one to five method’ need to be further studied among student groups from other healthcare contexts.

  • 32.
    Fischer Grönlund, Catarina
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    The Swedish translation and cultural adaptation of the Measure of Moral Distress for Healthcare Professionals (MMD-HP)2021In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 22, no 1, article id 151Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Moral distress has been described as an emotionally draining condition caused by being prevented from providing care according to one's convictions. Studies have described the impact of moral distress on healthcare professionals, their situations and experiences. The Measure of Moral Distress for Healthcare Professionals (MMD-HP) is a questionnaire that measures moral distress experienced by healthcare professionals at three levels: patient, system and team. The aim of this project was to translate and make a cultural adaption of the MMD -HP to the Swedish context.

    METHODS: The questionnaire comprises 27 items, rated according to frequency and intensity on a five-point Likert scale (0-4). The procedure for translating MMD-HP followed WHO guidelines (2020). These entailed a forward translation from English to Swedish, a back translation, expert panel validation, pretesting and cognitive face-to-face interviews with 10 healthcare professionals from various professions and healthcare contexts.

    RESULTS: The Swedish version of MMD-HP corresponds essentially to the concept of the original version. Parts of some items' had to be adjusted or removed in order to make the item relevant and comprehensible in a Swedish context. Overall, the cognitive interviewees recognized the content of the items which generally seemed relevant and comprehensible.

    CONCLUSION: The Swedish version of MMD-HP could be a useful tool for measuring moral distress among healthcare professionals in a Swedish healthcare context.

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  • 33.
    Fischer Grönlund, Catarina
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Psychometric testing of the Swedish version of the measure of moral distress for healthcare professionals (MMD-HP)2023In: BMC Medical Ethics, ISSN 1472-6939, E-ISSN 1472-6939, Vol. 24, no 1, article id 35Article in journal (Refereed)
    Abstract [en]

    Background: Moral distress has been described as moral constraints and uncertainty connected with guilty feelings of being unable to give care in accordance with one's values for good care. Various instruments to measure moral distress have been developed. The instrument measure of moral distress for healthcare professionals (MMD-HP) was developed to capture the experience and frequency of moral distress among various healthcare professionals. The MMD-HP has been translated and culturally adapted into the Swedish language and context; however, the translation has not been validated. Therefore, this study aimed to evaluate the validity and reliability of the Swedish version of the measure of moral distress for healthcare professionals (MMD-HP).

    Methods: Eighty-nine staff from various professions at a hospital in northern Sweden participated in the study. A confirmatory factor analysis was performed to check for consistency with the original version of the MMD-HP. To evaluate internal consistency, Cronbach's alpha was calculated for each domain and for the scale as a whole.

    Results: The scale as a whole showed a Cronbach's alpha of 0.96, with a range between 0.84 and 0.90 between the different subscales. A confirmatory factor analysis based on the original four-factor structure showed good fit indices with a χ2/df of 0.67, CFI at 1.00, TLI at 1.02 and NFI at 0.97. RMSEA was at 0.00, and SRMR was at 0.08. A comparison of the total score between three equally large groups of years of experience at the present workplace showed no significant differences (F = 0.09, df = 2, p = 0.912).

    Conclusions: We found that the Swedish version of the MMD-HP has shown validity and reliability for use in a Swedish context for measuring moral distress among health personnel.

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  • 34.
    Fischer Grönlund, Catarina
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Zingmark, Karin
    The 'one to five' method - A tool for ethical communication in groups among healthcare professionals2021In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 51, article id 102998Article in journal (Refereed)
    Abstract [en]

    Healthcare professionals have expressed a wish for facilitated inter-professional communications about ethical difficulties experienced in clinical practice. The introduction of an easily accessible method for facilitating ethical communication in groups may promote its implementation in everyday clinical practice. The aim of this paper was to draw on previous studies and available knowledge in order to develop and describe a method that enables systematic implementation of inter-professional ethical communication in groups. The ‘one-to-five method’ for facilitated ethical communication in groups is theoretically inspired by Habermas's theory of communicative actions and base on previous studies that accords with the Helsinki Declaration (2013). The ‘one to five method’ supports guidance of ethical communication in five steps: telling the story about the situation; reflections and dialogue concerning the emotions involved; formulation of the problem/dilemma; analysis of the situation and the dilemma; and searching for a choice of action or approach. It offers an easily accessible method for teaching healthcare professionals how to facilitate ethics communication groups. Educating facilitators closely connected to clinical work may lead to ethical dialogue becoming a natural part of clinical practice for healthcare professionals.

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  • 35.
    Fischer Grönlund, Catarina
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Isaksson, Ulf
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Moral distress thermometer: Swedish translation, cultural adaptation and validation2023In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989Article in journal (Refereed)
    Abstract [en]

    Background: Moral distress is a problem and negative experience among health-care professionals. Various instruments have been developed to measure the level and underlying reasons for experienced moral distress. The moral distress thermometer (MDT) is a single-tool instrument to capture the level of moral distress experienced in real-time.

    Aim: The aim of this study was to translate the MDT and adapt it to the Swedish cultural context. R

    esearch design: The first part of this study concerns the translation of MDT to the Swedish context, and the second part the psychometric testing of the Swedish version.

    Participants and research context: 89 healthcare professionals working at a hospital in northern Sweden participated. Convergent validity was tested between MDT and Measure of Moral Distress-Healthcare Professionals (MMD-HP), and construct validity was tested by comparing MDT scores among healthcare professionals. MDT was compared with responses to the final questions in MMD-HP. One-way ANOVA, Welch’s ANOVA, Games–Howell post-hoc test and Pearson’s correlation analysis were done.

    Ethical considerations: The study was approved by the Swedish Ethics Review Authority (dnr 2020-04120) in accordance with Helsinki Declaration.

    Results: The translated Swedish version of MDT was described as relevant to capture the experience of moral distress. The mean value for MDT was 2.26, with a median of 2 and a mode value of 0. The result showed moderate correlations between the MDT and MMD-HP total scores. There was a significant difference when comparing MDT and healthcare professionals who had never considered leaving their present position with those who had left and those who had considered leaving but had not done so, with the latter assessing significantly higher moral distress.

    Conclusion: The MDT is an easily available instrument useful as an extension to MMD-HP to measure the real-time experience of moral distress among healthcare professionals in a Swedish context.

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  • 36.
    Fischer-Grönlund, Catarina
    et al.
    Umeå University, Faculty of Medicine, Department of Nursing.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Zingmark, Karin
    Department of Health Science, Division of Nursing, Luleå University of Technology, Sweden.
    The 'one to five' method: A tool for ethical communication in groups among healthcare professionals2021In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 51, article id 102998Article in journal (Refereed)
    Abstract [en]

    Healthcare professionals have expressed a wish for facilitated inter-professional communications about ethical difficulties experienced in clinical practice. The introduction of an easily accessible method for facilitating ethical communication in groups may promote its implementation in everyday clinical practice. The aim of this paper was to draw on previous studies and available knowledge in order to develop and describe a method that enables systematic implementation of inter-professional ethical communication in groups. The 'one-to-five method' for facilitated ethical communication in groups is theoretically inspired by Habermas's theory of communicative actions and base on previous studies that accords with the Helsinki Declaration (2013). The 'one to five method' supports guidance of ethical communication in five steps: telling the story about the situation; reflections and dialogue concerning the emotions involved; formulation of the problem/dilemma; analysis of the situation and the dilemma; and searching for a choice of action or approach. It offers an easily accessible method for teaching healthcare professionals how to facilitate ethics communication groups. Educating facilitators closely connected to clinical work may lead to ethical dialogue becoming a natural part of clinical practice for healthcare professionals.

  • 37. Fryxell, Jenni
    et al.
    Olofsson, Mona
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine. Research Unit, Medicine-Geriatric Clinic, Skellefteå Hospital, Skellefteå, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing. Campus Skellefteå, Skellefteå, Sweden.
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine. Research Unit, Medicine-Geriatric Clinic, Skellefteå Hospital, Skellefteå, Sweden.
    Effect of Integrated, Person-Centred Palliative Advanced Home and Heart Failure Care on NT-proBNP Levels: A Substudy of the PREFER Study2021In: World Journal of Cardiovascular Diseases, ISSN 2164-5329, Vol. 11, no 1, p. 1-10Article in journal (Refereed)
    Abstract [en]

    Objective: In 2012, we initiated a new person-centred model, integrated Palliative advanced home caRE and heart FailurE caRe (PREFER), to integrate specialised palliative home care with heart failure care. Natriuretic peptide-guided treatment is valuable for younger patients (age < 75 years), but its usefulness in palliative care is uncertain. We explored whether patients in PREFER reduced mean level of N-terminal pro B-type natriuretic peptide (NT-proBNP) more than the control group.

    Design: A pre-specified, exploratory substudy, analysed within the prospective, randomised PREFER study, which had an open, non-blinded design.

    Participants: Patients in palliative care with chronic heart failure, New York Heart Association class III-IV were randomly assigned to an intervention (n = 36; 26 males, 10 females, mean age: 81.9 years) or control group (n = 36; 25 males, 11 females, mean age:76.5 years). The intervention group received the PREFER intervention for 6 months. The control group received care as usual at a primary health care centre or heart failure clinic at the hospital. NT-proBNP was measured at the start and end of study.

    Results: Plasma levels of NT-proBNP differed significantly between groups at baseline. By the end of the study, no significant difference was found between the groups. The mean value for NT-proBNP decreased by 35% in the PREFER group but was not statistically significant (P = 0.074); NT-proBNP increased 4% in the control group.

    Conclusions: We found no statistically significant reductions of NT-proBNP levels neither between nor within the PREFER and the control group at the end of the study.

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  • 38.
    Granat, Lisa
    et al.
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Andersson, Sofia
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Hadziabdic, Emina
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Sandgren, Anna
    Center for Collaborative Palliative Care, Department of Health and Caring Sciences, Linnaeus University, Växjö, Sweden.
    Translation, adaptation, and validation of the Self-efficacy in Palliative Care scale (SEPC) for use in Swedish healthcare settings2022In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 21, no 1, article id 48Article in journal (Refereed)
    Abstract [en]

    Background: One challenge for healthcare professionals when delivering palliative care can be their lack of confidence. The Self-efficacy in Palliative Care Scale (SEPC) is considered a valid and reliable assessment scale to evaluate confidence when delivering palliative care. Currently, there is not a reliable instrument aimed to measure healthcare professionals’ confidence in palliative care in Swedish. Therefore, this study aimed to translate, culturally adapt, and validate the SEPC-scale for use in a Swedish healthcare context.

    Methods: This study applied the World Health Organization’s (WHO) guidelines for translating and adapting instruments, using forward and back-translation, an expert panel, and cognitive interviews. Swedish experts in palliative care (n = 6) assessed the Swedish version of the SEPC-scale based on its relevance, understandability, clarity, and sensitivity on a Likert scale. Methods involved calculation of content validity index (CVI) with modified kappa statistics and cognitive interviewing with healthcare professionals (n = 10) according to the “think-aloud” method.

    Results: Calculation of I-CVI (Item-CVI) showed that the Swedish SEPC-scale was considered relevant but needed some modifications to improve its understandability and clarity. The experts recognized an absence of precision in some items that affected clarity and understanding. Likewise, the healthcare professionals highlighted some challenges with understandability and clarity. They indicated that the scale was relevant, but a few items needed adjustment to fit a broader range of healthcare professionals. Items that referred to death and dying could be sensitive but were considered relevant.

    Conclusions: The SEPC-scale is considered valid for use in Swedish healthcare practice, for a broad range of healthcare professionals, and for diagnoses other than cancer. This study shows that cultural adaptation is necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.necessary for establishing relevance and enabling acceptance to various healthcare professionals and contexts in the target country.

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  • 39.
    Hedman, Mante
    et al.
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Boman, Kurt
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Section of Medicine.
    Brännström, Margareta
    Umeå University, Faculty of Medicine, Department of Nursing.
    Wennberg, Patrik
    Umeå University, Faculty of Medicine, Department of Public Health and Clinical Medicine, Family Medicine.
    Clinical profile of rural community hospital inpatients in Sweden: a register study2021In: Scandinavian Journal of Primary Health Care, ISSN 0281-3432, E-ISSN 1502-7724, Vol. 39, no 1, p. 92-100Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patients in Sweden's rural community hospitals have not been clinically characterised. We compared characteristics of patients in general practitioner-led community hospitals in northern Sweden with those admitted to general hospitals.

    DESIGN: Retrospective register study.

    SETTING: Community and general hospitals in Västerbotten and Norrbotten counties, Sweden.

    PATIENTS: Patients enrolled at community hospitals and hospitalised in community and general hospitals between 1 January 2010 and 31 December 2014.

    OUTCOME MEASURES: Age, sex, number of admissions, main, secondary and total number of diagnoses.

    RESULTS: We recorded 16,133 admissions to community hospitals and 60,704 admissions to general hospitals. Mean age was 76.8 and 61.2 years for community and general hospital patients (p < .001). Women were more likely than men to be admitted to a community hospital after age adjustment (odds ratio (OR): 1.11; 95% confidence interval (CI): 1.09-1.17). The most common diagnoses in community hospital were heart failure (6%) and pneumonia (5%). Patients with these diagnoses were more likely to be admitted to a community than a general hospital (OR: 2.36; 95% CI: 2.15-2.59; vs. OR: 3.32: 95% CI: 2.77-3.98, respectively, adjusted for age and sex). In both community and general hospitals, doctors assigned more diagnoses to men than to women (both p<.001).

    CONCLUSIONS: Patients at community hospitals were predominantly older and women, while men were assigned more diagnoses. The most common diagnoses were heart failure and pneumonia. Our observed differences should be further explored to define the optimal care for patients in community and general hospitals.

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  • 40.
    Hedman, Mante