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  • 1.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Capio Palliativ vård Dalen.
    Holm, Maja
    Sophiahemmet högskola.
    Benkel, Inger
    Göteborgs universitet.
    Norinder, Maria
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Ewing, Gail
    Storbritannien.
    Grande, Gunn
    Storbritannien.
    Håkanson, Cecilia
    Göteborgs universitet.
    Öhlen, Joakim
    Göteborgs universitet.
    Årestedt, Kristofer
    Linnéuniversitetet, Landstinget i Kalmar län.
    A person-centred approach in nursing: Validity and reliability of the Carer Support Needs Assessment Tool.2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, p. 1-8, article id S1462-3889(18)30058-9Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The Carer Support Needs Assessment Tool (CSNAT) was developed for use among family caregivers in palliative care for assessment of their support needs. The purpose of this study was to translate and evaluate the validity and reliability of the CSNAT in a sample of Swedish family caregivers and nurses in a palliative care context.

    METHODS: Data for this validation study was collected during 2016 in the context of palliative home care in two larger Swedish cities. The study was conducted in three stages to reach conceptual, semantic, operational and measurement equivalence between the original UK version and the Swedish version. Stage I consisted of translation to Swedish. In Stage II, cognitive interviews were performed with 8 family caregivers and 10 nurses. Data were analyzed based on relevance, clarity and sensitivity. In Stage III, the CSNAT and related self-rating measures (caregiver burden, preparedness for caregiving and quality of life) were completed by 118 family caregivers. Data quality, construct validity and test-retest reliability were evaluated.

    RESULTS: The CSNAT items were considered relevant and useful to identify areas of support needs. The Swedish CSNAT showed sound psychometric properties with satisfactory data quality and few problems with missing data across items (1.8%-6.1%). All items except one correlated as expected (rho>0.3) with caregiver burden, supporting construct validity. All items had satisfactory test-retest reliability (κw=0.45-0.75).

    CONCLUSIONS: This study further adds to the validity of the CSNAT and shows in addition that it is reliable and stable for use among family caregivers in palliative care.

  • 2.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Dalens sjukhus, Stockholm.
    Holm, Maja
    Mälardalens högskola, Linnéuniversitet, Växjö.
    Bylund-Grenklo, Tove
    Linnéuniversitetet, Växjö, Karo­linska institutet.
    Goliath, Ida
    Karolinska institutet, Ersta sjukhus, Stockholm.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Viktigt att stärka närståendes möjligheter att förbereda sig2016In: Läkartidningen, ISSN 0023-7205, E-ISSN 1652-7518, Vol. 113, article id D4YCArticle in journal (Other academic)
  • 3.
    Alvariza, Anette
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. CapioPalliativ vård, Dalen sjukhus, Stockholm.
    Årestedt, Kristofer
    Linnéuniversitetet, Länssjukhuset i Kalmar.
    Boman, Kurt
    Umeå universitet.
    Brännström, Margareta
    Umeå universitet.
    Family members' experiences of integrated palliative advanced home and heart failure care: A qualitative study of the PREFER intervention.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article 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.

  • 4.
    Axelsson, Lena
    et al.
    Linnéuniversitetet, Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Lindberg, Jenny
    Lunds universitet, Skånes universitetssjukhus.
    Öhlén, Joakim
    Göteborgs universitet.
    Håkanson, Cecilia
    Sophiahemmet högskola.
    Reimertz, Helene
    Region Kronoberg.
    Fürst, Carl-Johan
    Lunds universitet, Region Skåne.
    Årestedt, Kristofer
    Linnéuniversitetet, Länssjukhuset i Kalmar.
    Unmet Palliative Care Needs Among Patients With End-Stage Kidney Disease: A National Registry Study About the Last Week of Life.2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244, article id S0885-3924(17)30494-3Article in journal (Refereed)
    Abstract [en]

    CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed.

    OBJECTIVES: To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD.

    METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected.

    RESULTS: About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.

    CONCLUSION: Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.

  • 5.
    Beck, Ingela
    et al.
    Lunds universitet; Högskolan Kristianstad.
    Olsson Möller, Ulrika
    Lunds universitet.
    Malmström, Marlene
    Lunds universitet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Samuelsson, Henrik
    Palliativ vård och ASIH Ystad .
    Lundh Hagelin, Carina
    Sophiahemmet högskola; Karolinska institutet.
    Rasmussen, Birgit
    Lunds universitet.
    Fürst, Carl Johan
    Lunds universitet.
    Translation and cultural adaptation of the Integrated Palliative care Outcome Scale including cognitive interviewing with patients and staff2017In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 16, p. 1-10, article id 49Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: To expand our clinical and scientific knowledge about holistic outcomes within palliative care, there is a need for agreed-upon patient-reported outcome measures. These patient-reported outcome measures then require translation and cultural adaptation, either from country-specific languages to English, or the other way around. The aim of this study was to translate and cross-culturally adapt the Integrated Palliative care Outcome Scale (IPOS) to the Swedish care context.

    METHODS: Swedish versions of IPOS Patient and IPOS Staff were developed and culturally adapted using recommended guidelines including cognitive interviews with patients (n = 13) and staff (n = 15) from different care contexts including general and specialised palliative care.

    RESULTS: The comprehension and judgement difficulties identified in the pre-final patient and staff versions were successfully solved during the cognitive interviewing process. IPOS was well accepted by both patients and staff, none of the questions were experienced as inappropriate, and all questions were judged important.

    CONCLUSIONS: In this study, we translated and culturally adapted the patient and staff versions of IPOS, and demonstrated face and content validity and acceptability of the scale through cognitive interviewing with patients and staff within residential care facility, surgical and specialised palliative home care units. Cognitive interviewing in parallel with patients and staff in rounds, with tentative analysis in between, was a suitable method for identifying and solving challenges with comprehension and evaluation in the pre-final version of IPOS. The Swedish IPOS is now available for use in a variety of clinical care settings.

  • 6.
    Beernaert, Kim
    et al.
    Belgien.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Fürst, Carl Johan
    Lunds universitet.
    Nyberg, Tommy
    Karolinska institutet; University of Cambridge, United Kingdom.
    Steineck, Gunnar
    Karolinska institutet; Sahlgrenska akademin, Göteborgs universitet.
    Bylund-Grenklo, Tove
    Karolinska institutet; Linnéuniversitetet.
    Distrust in the End-of-Life Care Provided to a Parent and Long-Term Negative Outcomes Among Bereaved Adolescents: A Population-Based Survey Study2017In: Journal of Clinical Oncology, ISSN 0732-183X, E-ISSN 1527-7755, Vol. 35, no 27, p. 3136-3144Article in journal (Refereed)
    Abstract [en]

    Purpose: Previous research shows that the death of a parent places children at risk for a number of negative outcomes. The role of trust in health care at the end of life has been acknowledged as crucial for patients and adult family members. However, the consequences of children’s distrust in the care provided to their parents remain unknown. Therefore, we investigated the negative long-term outcomes of cancer-bereaved sons’ and daughters’ distrust in the care that was provided to a dying parent.

    Methods: We used a population-based nationwide survey to investigate self-reported distrust in the care provided and possible negative outcomes in 622 (73%) participants who had lost a parent as a result of cancer 6 to 9 years earlier, at ages 13 to 16 years. All participants were 18 years or older at the time of the survey.

    Results: In those who reported no or little trust (ie, distrust) in the health care provided to their dying parents, we found statistically significantly higher risks of various negative outcomes at the time of survey: bitterness toward health care professionals for not having done everything that was possible (crude risk ratio [RR], 3.5; 95% CI, 2.3 to 5.1) and for having stopped treatment (RR, 3.4; 95% CI, 2.1 to 6.0), self-destructiveness (eg, self-injury [RR, 1.7; 95% CI, 1.2 to 2.4]), and psychological problems (eg, moderate to severe depression according to the Patient Health Questionnaire–9 [RR, 2.3; 95% CI, 1.5 to 3.5]).

    Conclusion: In cancer-bereaved former adolescents, distrust in the health care provided to the dying parent is associated with a higher risk of negative long-term outcomes. The health care professionals involved in this care might play an important role in safeguarding the trust of adolescents.

  • 7.
    Cleeve, Helena
    et al.
    Karolinska institutet.
    Tishelman, Carol
    Karolinska institutet.
    Macdonald, Alastair
    Storbritannien.
    Lindqvist, Olav
    Karolinska institutet, Umeå universitet.
    Goliath, Ida
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Not just things: The roles of objects at the end of life.2018In: Sociology of Health and Illness, ISSN 0141-9889, E-ISSN 1467-9566Article in journal (Refereed)
    Abstract [en]

    While the study of objects in care contexts is an emerging research field, it is largely overlooked in end of life (EoL) care. In this study, we empirically and inductively explore the roles of objects at the EoL from the perspective of bereaved family members. Open individual interviews were conducted with 25 family members recruited from palliative in-patient and homecare units, as well as residential care facilities. After verbatim transcription, the interviews were analysed thematically. Based on these interviews, we conceptualise the roles of objects as relating to temporality, transformations of the everyday, and care. Through analysis we offer two main insights, the first relating to interdependency between objects and people, and the second to the recognition of objects as simultaneously flexible and stable in this interdependent relationship. The capacity and challenge of objects as part of EoL care lies in their ability to encompass various viewpoints and relationships simultaneously. This might provide valuable insights for staff caring for dying persons and their families. We propose that staff's ability to navigate objects in care practices could be meaningful in supporting the relationships between individuals in EoL situations.

  • 8.
    Cronfalk, Berit Seiger
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Høgskolen Stord/Haugesund.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Umeå universitet.
    Ternestedt, Britt-Marie
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    They are still the same: Family members' stories about their relatives with dementia disorders as residents in a nursing home.2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 168-176Article in journal (Refereed)
    Abstract [en]

    In order to better understand the context of suffering from dementia disorders, greater efforts should be made to understand and identify what persons with such disorders experience when living in a nursing home. The aim of this qualitative study was to gain further understanding of how persons with dementia disorders experienced and coped with their changed life situation after being relocated to a nursing home as described by their family members' perceptions. Qualitative data were collected from ten interviews with family members and evaluated using content analysis. The main findings suggest that residents with dementia disorders largely maintained their personality intact throughout the trajectory of illness as they were able to keep their habits and interests. The local environment of the nursing home and the residents' relationships to staff were important in order to feel accepted. Four categories were discerned during the analysis: living in limbo; coming to peace; keeping old habits and relationships; and thoughts about impending death. It is reasonable to believe that old habits and interests may be preserved as the embodiment of such habits are deeply rooted and connected to a person's identity even when going through various changes and transitions in life. Therefore, to be accepted as the person you are requires care and services to specific needs, i.e. person-centeredness. Lack of understanding from staff may therefore have an adverse effect on a person's self-respect and identity. For that reason, staff needs to reflect on their attitudes and relationships as well as extending their knowledge about how to address sensitive topics such as the residents' impending death. To achieve this support from managers is pivotal. Future research should focus on support to nursing staff to further knowledge and understanding about the individual changes resident go through near the end of life.

  • 9.
    Eilertsen, Mary-Elizabeth Bradley
    et al.
    Norge, Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up.2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 4, p. 406-413Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

    METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

    RESULTS: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

    SIGNIFICANCE OF RESULTS: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

  • 10.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliative vård, Dalen sjukhus, Stockholm..
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    The family talk intervention in palliative care: a study protocol2018In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 17, no 35Article in journal (Refereed)
    Abstract [en]

    Background: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.

    Methods: This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6–19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.

    Discussion: This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.

  • 11.
    Ewertzon, Mats
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen, Stockholm.
    Winnberg, Elisabeth
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Leksell, Janeth
    Högskolan Dalarna, Uppsala universitet.
    Andershed, Birgitta
    Norge.
    Goliath, Ida
    Karolinska institutet, Ersta sjukhus.
    Momeni, Pardis
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Kneck, Åsa
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences.
    Skott, Maria
    Karolinska institutet, Norra Stockholms psykiatri Stockholms läns landsting.
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet, Länssjukhuset i Kalmar.
    Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care.2018In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648Article in journal (Refereed)
    Abstract [en]

    AIM: To adapt the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability.

    BACKGROUND: Involvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed.

    DESIGN: A psychometric evaluation study, with a cross-sectional design.

    METHOD: The content validity of the Family Involvement and Alienation Questionnaire was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used.

    RESULTS: The content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the Family Involvement and Alienation Questionnaire (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability.

    CONCLUSION: The study provides evidence that the Family Involvement and Alienation Questionnaire (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. This article is protected by copyright. All rights reserved.

  • 12.
    Hedman, Ragnhild
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Umeå universitet.
    Hellström, Ingrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linköpings universitet.
    Agency and communion in people with Alzheimer's disease, as described by themselves and their spousal carers.2017In: Dementia, ISSN 1471-3012, E-ISSN 1741-2684, article id 1471301217706268Article in journal (Refereed)
    Abstract [en]

    Agency (individuality) and communion (togetherness) are vital to a positive sense of self. People with Alzheimer's disease are at risk of experiencing diminished agency and decreased communion. Their family members', especially their partner's, view on their agency and communion is also likely to influence their sense of agency, communion, and self. In the present study, individual interviews with 10 people with Alzheimer's disease and their spousal carers were qualitatively analysed to describe how in each couple the two spouses viewed the agency and communion of the person with Alzheimer's disease from an individual perspective. The findings show that the carers generally described the agency of the person with Alzheimer's disease as slightly weaker compared with the persons with Alzheimer's disease themselves. The carers also appeared to have poor knowledge of what supported and threatened the sense of communion of the person with Alzheimer's disease.

  • 13.
    Henoch, Ingela
    et al.
    Göteborgs universitet, Angereds närsjukhus.
    Melin-Johansson, Christina
    Göteborgs universitet, Mittuniversitetet.
    Bergh, Ingrid
    Högskolan i Skövde.
    Strang, Susann
    Göteborgs universitet, Angereds närsjukhus.
    Ek, Kristina
    Högskolan i Skövde.
    Hammarlund, Kina
    Högskolan i Skövde.
    Lundh Hagelin, Carina
    Sophiahemmets högskola, Stockholms sjukhem, Karolinska institutet.
    Westin, Lars
    Högskolan i Skövde.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Ersta sjukhus.
    Browall, Maria
    Högskolan i Skövde, Karolinska institutet.
    Undergraduate nursing students' attitudes and preparedness toward caring for dying persons: A longitudinal study2017In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 26, p. 12-20Article in journal (Refereed)
    Abstract [en]

    Nursing education needs to prepare students for care of dying patients. The aim of this study was to describe the development of nursing students' attitudes toward caring for dying patients and their perceived preparedness to perform end-of-life care. A longitudinal study was performed with 117 nursing students at six universities in Sweden. The students completed the Frommelt Attitude Toward Care of the Dying Scale (FATCOD) questionnaire at the beginning of first and second year, and at the end of third year of education. After education, the students completed questions about how prepared they felt by to perform end-of-life care. The total FATCOD increased from 126 to 132 during education. Five weeks' theoretical palliative care education significantly predicted positive changes in attitudes toward caring for dying patients. Students with five weeks' theoretical palliative care training felt more prepared and supported by the education to care for a dying patient than students with shorter education. A minority felt prepared to take care of a dead body or meet relatives.

  • 14.
    Hjorth, Elin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Sejersen, Thomas
    Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet, Astrid Lindgrens barnsjukhus.
    Parents' advice to healthcare professionals working with children who have spinal muscular atrophy2018In: European journal of paediatric neurology, ISSN 1090-3798, E-ISSN 1532-2130, Vol. 22, no 1, p. 128-134, article id S1090-3798(17)30897-8Article in journal (Refereed)
    Abstract [en]

    AIM: To explore parents' advice to healthcare professionals working with children with spinal muscular atrophy (SMA).

    MATERIALS AND METHODS: This study derives from a Swedish nationwide survey and uses content analysis to make inferences from answers to an open-ended question concerning parent's advice to healthcare professionals. Of eligible parents who had a child born in Sweden between 2000 and 2010, diagnosed with SMA type 1 or 2, and for whom respiratory support was considered in the first year of life, 61 participated in the study (response rate: 87%). Of these, 51 parents answered the question about advice to healthcare professionals working with children with SMA.

    RESULTS: More than half of the advice from parents was related to professional-family relations. The second most frequent type of advice related to two aspects of knowledge about SMA: desire that healthcare professionals possess knowledge, and desire that they provide knowledge. The parents also had advice concerning support in daily life, both to the parents and to the affected child. Other pieces of advice were related to organization of care and the parents' desire to be involved in the child's care.

    CONCLUSIONS: Parents advised healthcare professionals to increase their disease-specific knowledge, to treat the parents as experts on their child, and to treat the family with respect, particularly in situations where the child's case is used as an opportunity to improve healthcare professionals' competence. Increased practical support in daily life and a case coordinator is also among parents' advice to healthcare professionals.

  • 15.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm, Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Wengström, Yvonne
    Karolinska institutet.
    Årestedt, Kristofer
    Linnéuniversitetet.
    Öhlen, Joakim
    Göteborgs universitet.
    Goliath, Ida
    Karolinska institutet.
    Recruiting participants to a randomized controlled trial testing an intervention in palliative cancer care - The perspectives of health care professionals.2017In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 31, p. 6-11, article id S1462-3889(17)30205-3Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The recruitment of participants to randomized controlled trials (RCTs) in palliative cancer care by health care professionals is often unsuccessful, which could result in failure to achieve study power. The purpose of this paper is to describe how health care professionals experienced recruiting patients and family caregivers to an RCT in palliative cancer care.

    METHODS: The study had a qualitative explorative design. Ten palliative home care settings were involved in the RCT and data were generated through focus group discussions and interviews with health care professionals who were responsible for the recruitment. The transcripts were analyzed with interpretive descriptive principles.

    RESULTS: The experiences of the health care professionals reveal that communicating the RCT-design to patients and family caregivers was a challenging part of the recruitment but was considered a process of learning over time. The delicate situation that participants were living under added to the challenge and health care professionals believed that the randomized design was contrary to their normal approach to always offer the best possible support.

    CONCLUSIONS: The results contribute valuable knowledge for future trials in palliative cancer care. To promote successful recruitment, health care professionals may be in need of more training to improve their communication skills and it may be necessary to consider other research designs than the RCT.

  • 16.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Illness narratives of people who are homeless.2016In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 11, no 1, article id 32924Article in journal (Refereed)
    Abstract [en]

    Multiple illnesses are common in all homeless populations. While most previous studies have focused on experiences of mental illness, there is a scarcity of studies about experiences of bodily illness among people who are homeless. This study aimed to explore illness narratives of people who are homeless, and how homelessness as a social context shapes the experience of multiple and/or advancing somatic conditions. The design was a qualitative single-case study, using interpretive description. Data were generated through interviews, with nine participants who were homeless rough sleepers in Stockholm, Sweden, recruited while receiving care in a support home for homeless people with complex care needs. The findings revealed experiences of illness embedded in narratives about falling ill, being ill, and the future. The particularity of these illness narratives and the way that they are shaped by homelessness give rise to several observations: the necessity of a capable body for survival; chaos and profound solitude in illness and self-care management; ambiguous feelings about receiving care, transitioning from independence, and "freedom" in the streets to dependency and being institutionalized; and finally, the absence of hope and desire for recovery or a better future. The narratives are discussed from the perspective of Frank's four types of illness stories (restitution, chaos, quest, and testimony). The findings stress that to provide appropriate care and support to people who are homeless and have multiple and/or advancing somatic conditions, health care professionals need to be informed both about the individual's biography and about the circumstances under which illness and self-care takes place in the streets.

  • 17.
    Håkanson, Cecilia
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Öhlén, Joakim
    Göteborgs universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Cardenas-Turanzas, Marylou
    USA.
    Wilson, Donna M
    Kanada.
    Loucka, Martin
    Tjeckien.
    Frache, Sandra
    Frankrike.
    Giovannetti, Lucia
    Italien.
    Naylor, Wayne
    Nya Zeeland.
    Rhee, YongJoo
    Sydkorea.
    Ramos, Miguel Ruiz
    Spanien.
    Teno, Joan
    Belgien.
    Beernaert, Kim
    Belgien.
    Deliens, Luc
    Belgien.
    Houttekier, Dirk
    Belgien.
    Cohen, Joachim
    Belgien.
    Place of death of children with complex chronic conditions: cross-national study of 11 countries.2017In: European Journal of Pediatrics, ISSN 0340-6199, E-ISSN 1432-1076, Vol. 176, no 3, p. 327-335Article in journal (Refereed)
    Abstract [en]

    Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys.

    CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.

  • 18.
    Israelsson, Johan
    et al.
    Länssjukhuset i Kalmar, Linnéuniversitetet, Linköpings universitet.
    Bremer, Anders
    Högskolan i Borås, Länssjukhuset i Kalmar.
    Herlitz, Johan
    Högskolan i Borås.
    Axelsson, Åsa B
    Göteborgs universitet.
    Cronberg, Tobias
    Lunds universitet, Skånes universitetssjukhus.
    Djärv, Therese
    Karolinska institutet.
    Kristofferzon, Marja-Leena
    Högskolan i Gävle, Uppsala universitet.
    Larsson, Ing-Marie
    Uppsala universitet.
    Lilja, Gisela
    Lunds universitet, Skånes universitetssjukhus.
    Sunnerhagen, Katharina S
    Göteborgs universitet.
    Wallin, Ewa
    Uppsala universitet.
    Ågren, Susanna
    Linköpings universitet, Landstinget i Östergötland.
    Åkerman, Eva
    Skånes universitetssjukhus, Karolinska institutet.
    Årestedt, Kristofer
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linnéuniversitetet, Länssjukhuset i Kalmar.
    Health status and psychological distress among in-hospital cardiac arrest survivors in relation to gender.2017In: Resuscitation, ISSN 0300-9572, E-ISSN 1873-1570, Vol. 114, p. 27-33, article id S0300-9572(17)30059-XArticle in journal (Refereed)
    Abstract [en]

    AIM: To describe health status and psychological distress among in-hospital cardiac arrest (IHCA) survivors in relation to gender.

    METHODS: This national register study consists of data from follow-up registration of IHCA survivors 3-6 months post cardiac arrest (CA) in Sweden. A questionnaire was sent to the survivors, including measurements of health status (EQ-5D-5L) and psychological distress (HADS).

    RESULTS: Between 2013 and 2015, 594 IHCA survivors were included in the study. The median values for EQ-5D-5L index and EQ VAS among survivors were 0.78 (q1-q3=0.67-0.86) and 70 (q1-q3=50-80) respectively. The values were significantly lower (p<0.001) in women compared to men. In addition, women reported more problems than men in all dimensions of EQ-5D-5L, except self-care. A majority of the respondents reported no problems with anxiety (85.4%) and/or symptoms of depression (87.0%). Women reported significantly more problems with anxiety (p<0.001) and symptoms of depression (p<0.001) compared to men. Gender was significantly associated with poorer health status and more psychological distress. No interaction effects for gender and age were found.

    CONCLUSIONS: Although the majority of survivors reported acceptable health status and no psychological distress, a substantial proportion reported severe problems. Women reported worse health status and more psychological distress compared to men. Therefore, a higher proportion of women may be in need of support. Health care professionals should make efforts to identify health problems among survivors and offer individualised support when needed.

  • 19.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Teamarbete i palliativ vård2018In: Omsorg: Nordisk tidsskrift for Palliativ Medisin, ISSN 0800-7489, Vol. 1, p. 15-19Article in journal (Other (popular science, discussion, etc.))
    Abstract [en]

    Teamwork is regarded a given for organizing and delivering palliative care. Developmental  psychology and team types may facilitate understanding of work group dynamics. Teams are  built on individuals who bring their competencies to the team. If said competence is missing,  teamwork is affected. Teamwork may constitute joint learning. Developing interpersonal and  communication skills as well as practicing self-awareness and undergoing continuing profes- sional development are crucial to teamwork.

  • 20.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Rasmussen, Birgit H.
    Lunds universitet.
    Fossum, Bjöörn
    Sophiahemmet högskola, Karolinska institutet, Södersjukhuset.
    Hansson, Johan
    Folkhälsomyndigheten.
    Fürst, Carl Johan
    Lunds universitet.
    Lundh Hagelin, Carina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers' experiences of specialist palliative home care teams.2018In: European Journal of Cancer Care, ISSN 0961-5423, E-ISSN 1365-2354, Vol. 27, no 6, p. 1-9, article id e12948Article in journal (Refereed)
    Abstract [en]

    Patients with advanced cancer and family caregivers in palliative care face physical, psychological, social and existential challenges, much of the time home alone. Specialist palliative home care team services can be instrumental for sense of security in an uncertain situation. The aim of this study was to describe patients' and family caregivers' experiences of specialist palliative home care team actions that are identified by the participants as helping or hindering interventions. Six patients and seven family caregivers were interviewed using the enhanced critical incident technique. Ninety-five critical incidents and wish list items were identified. Providing adequate resources, keeping promises and being reliable, and creating partnerships are actions by specialist palliative care teams that patients and family caregivers experienced as helping in meeting expressed or anticipated needs in patients and family caregivers. Being reliable and including patients and family caregivers in partnerships help to continue with daily life, even though death may be close. Unmet needs resulted in experiences of disrespect or violation of personal space/integrity.

  • 21.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Paediatric palliative care should focus on living as well as dying.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 6Article in journal (Refereed)
  • 22.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Why and where do children die?2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227, Vol. 107, no 10Article in journal (Refereed)
  • 23.
    Lind, Susanne
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Wallin, L
    Karolinska institutet, Högskolan Dalarna, Göteborgs universitet.
    Brytting, Tomas
    Ersta Sköndal Bräcke University College, The Institute for Organisational and Worklife Ethics.
    Fürst, C J
    Lunds univeristet, Region Skåne.
    Sandberg, J
    Jönköpings univeristet.
    Implementation of national palliative care guidelines in Swedish acute care hospitals: A qualitative content analysis of stakeholders' perceptions.2017In: Health Policy, ISSN 0168-8510, E-ISSN 1872-6054, Vol. 121, no 11, p. 1194-1201, article id S0168-8510(17)30239-7Article in journal (Refereed)
    Abstract [en]

    In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care.

  • 24.
    Lundberg, Tina
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Forinder, Ulla
    Karolinska institutet, Högskolan i Gävle.
    Olsson, Mariann
    Karolinska institutet, Stiftelsen Stockholms sjukhem.
    Fürst, Carl Johan
    Lunds universitet.
    Årestedt, Kristofer
    Linnéuniversitetet, Linköpings universitet, Landstinget i Kalmar län.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Bereavement stressors and psychosocial well-being of young adults following the loss of a parent: A cross-sectional survey2018In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 35, p. 33-38, article id S1462-3889(18)30069-3Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The knowledge about young adults who have lost a parent to cancer is limited, and to reach a broader understanding about this group, this study used the Dual Process Model of Coping with Bereavement (Stroebe and Schut, 1999) as a theoretical framework. The purpose of this study was to describe loss- and restoration-oriented bereavement stressors and psychosocial wellbeing of young adults following the loss of a parent to cancer.

    METHOD: This survey used baseline data from a longitudinal study. Young adults, aged 16-28 years, who lost a parent to cancer more than two months earlier and agreed to participate in support groups held at three palliative care services in Sweden, responded to a comprehensive theory-based study-specific questionnaire.

    RESULTS: Altogether, 77 young adults (64 women and 13 men) answered the questionnaire an average of five-to-eight months after the loss. Twenty percent (n = 15) had not been aware of their parent's impending death at all or only knew a few hours before the death, and 65% (n = 50) did not expect the death when it occurred. The young adults reported low self-esteem (n = 58, 76%), mild to severe anxiety (n = 55, 74%), mild to severe depression (n = 23, 31%) and low life satisfaction.

    CONCLUSION: Young adults reported overall poor psychosocial wellbeing following bereavement. The unexpectedness and unawareness of the parent's imminent death, i.e., loss-oriented bereavement stressors, might influence psychosocial wellbeing. Despite these reports, restoration-oriented stressors, such as support from family and friends, helped them to cope with the loss.

  • 25.
    Lundh Hagelin, Carina
    et al.
    Sophiahemmet högskola; Karolinska institutet.
    Klarare, Anna
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Fürst, Carl Johan
    Lunds universitet.
    The applicability of the translated Edmonton Symptom Assessment System: revised [ESAS-r] in Swedish palliative care2018In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 57, no 4, p. 560-562Article in journal (Refereed)
  • 26.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Mogensen, N
    Karolinska institutet.
    Harila-Saari, A
    Uppsala universitet.
    Lähteenmäki, P M
    Finland.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Sweden and Finland need to improve the support provided for the siblings of children with cancer.2018In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed)
    Abstract [en]

    Evidence favours sibling support as a standard of care in paediatric oncology (1). Guidelines published in 1999 by the International Society of Paediatric Oncology (2) recommended involving siblings in the ill child's care and supporting siblings during and after the illness. Studies have shown that this is something that siblings want and need (3) and lack of support has increased the risk of long-term psychological distress (4). Sibling support varies between countries. This article is protected by copyright. All rights reserved.

  • 27.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Family Bereavement Care in Pediatric Oncology2018In: Palliative Care in Pediatric Oncology / [ed] Joanne Wolfe, Barbara L. Jones, Ulrika Kreicbergs & Momcilo Jankovic, Springer, 2018, p. 245-264Chapter in book (Refereed)
    Abstract [en]

    Studies have shown that grief after losing a child is more intense and prolonged than after the loss of a spouse or a parent. Children are expected to outlive their parents, and losing one’s child has been described as one of the most traumatic experiences possible. While a majority of bereaved parents adjust to the loss of a child without professional help, a significant minority will experience persistent and intensive grief reactions and may need treatment. Siblings are often called “the forgotten grievers” based on the idea that they are not the focus of family, friends, and health-care professionals, who often primarily focus on the ill child and the parents. Unfortunately, research has shown that a majority of siblings still grieve many years after the loss. As research shows that long-term psychological morbidity, including grief, among parents and siblings is affected by modifiable and/or avoidable factors during illness, end of life, and after the loss, family bereavement care should start early and beyond the child’s death. This chapter describes factors that can contribute to the psychological outcomes for parents and siblings after bereavement. Symptom management in the end of life has shown important as well as a good relationship between the health-care professionals and the parents/siblings during the illness trajectory. Parents and siblings need open and honest communication relating to diagnosis, prognosis, and impending death as it allows them to better prepare for the loss—something that are important for their psychological well-being years after bereavement. Bereavement support for the family after the loss is also described in this chapter. For example, it is important for families to have access to the care team after the loss of the child as they have expressed a need for, e.g., remembrance ceremonies and for obtaining more knowledge about the end-of-life care. Parent support groups are much appreciated by the parents but lack evaluation of their effect. This is also the case for sibling camps. As much of bereavement care is not evidence based, or not even theoretically based, more research is needed in order to better facilitate the grieving process and long-term psychological well-being for parents and siblings.

  • 28.
    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.

  • 29.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Karolinska institutet.
    Wallin, Alexandra Eilegård
    Högskolan Dalarna.
    Eilertsen, Mary-Elizabeth B
    Norge.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Spirituality and religious coping are related to cancer-bereaved siblings' long-term grief.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed)
    Abstract [en]

    Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents' and young adults' ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief. Method: This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief ("What has helped you to cope with your grief after your sibling's death?") and one closed-ended question about siblings' long-term grief ("Do you think you have worked through your grief over your sibling's death?"). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings' long-term grief. Result The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings' experience of having worked through their grief two to nine years after the loss (p = 0.016). Significance of results Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.

  • 30.
    Mazaheri, Monir
    et al.
    Röda korsets högskola, Tehran University of Medical Sciences, Iran.
    Ericson-Lidman, Eva
    Umeå universitet.
    Joakim, Öhlén
    Göteborgs universitet.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Umeå universitet.
    Meanings of troubled conscience and how to deal with it: expressions of Persian-speaking enrolled nurses in Sweden.2018In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 32, no 1, p. 380-388Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: A feature of the healthcare system in Sweden, particularly in the care of older people, is its cultural diversity in terms of having considerable numbers of both caregivers and care recipients with an immigrant background. Considering the influence of culture in ethical decision-making processes, the idea of conscience and the adverse effects of a troubled conscience, it is important to study the concepts of conscience and troubled conscience in culturally diverse populations. There is no published study regarding troubled conscience among immigrant populations that includes enrolled nurses.

    AIM: To illuminate the meanings of troubled conscience and how to deal with it among enrolled nurses with Iranian backgrounds working in Swedish residential care for Persian-speaking people with dementia who have emigrated from Iran.

    METHOD: The study was conducted with a phenomenological hermeneutic design. Ten enrolled nurses with an Iranian background, with at least one year's experience of taking care of older people with dementia, were interviewed. The study was reviewed by the Regional Ethical Review Board for ethical vetting of research involving humans. Appropriate measures were taken to ensure confidentiality and voluntary participation.

    RESULTS: The meanings of having a troubled conscience for the participants comprise not being a good person, including being an uncaring person, not acting according to one's values and living in a state of unease. Dealing with a troubled conscience involves trying to compensate for the harm one has caused and trying to prevent similar situations by being a responsible caregiver.

    CONCLUSIONS: The enrolled nurses understood themselves as caring people and not only caregivers. They knew that they should hear their conscience and respond to it by trying to be a caring person and acting according to their values. The findings should be interpreted in the given specific context.

  • 31. Melin-Johansson, Christina
    et al.
    Österlind, Jane
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Hagelin, Carina Lundh
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Henoch, Ingela
    Göteborgs universitet.
    Ek, Kristina
    Bergh, Ingrid
    Högskolan i Skövde.
    Browall, Maria
    Högskolan i Skövde, Jönköping University.
    Undergraduate nursing students' transformational learning during clinical training.2018In: International Journal of Palliative Nursing, ISSN 1357-6321, E-ISSN 2052-286X, Vol. 24, no 4, p. 184-192Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Undergraduate nursing students encounter patients at the end of life during their clinical training. They need to confront dying and death under supportive circumstances in order to be prepared for similar situations in their future career.

    AIM: To explore undergraduate nursing students' descriptions of caring situations with patients at the end of life during supervised clinical training.

    METHODS: A qualitative study using the critical incident technique was chosen. A total of 85 students wrote a short text about their experiences of caring for patients at the end of life during their clinical training. These critical incident reports were then analysed using deductive and inductive content analysis.

    FINDINGS: The theme 'students' transformational learning towards becoming a professional nurse during clinical training' summarises how students relate to patients and relatives, interpret the transition from life to death, feel when caring for a dead body and learn end-of-life caring actions from their supervisors.

    IMPLICATIONS: As a preparation for their future profession, students undergoing clinical training need to confront death and dying while supported by trained supervisors and must learn how to communicate about end-of-life issues and cope with emotional stress and grief.

  • 32.
    Norberg, Astrid
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Personcentrerad omvårdnad av personer med avancerad demens2017In: Vägen till patientens värld och personcentrerad vård: att bli lyssnad på och förstådd / [ed] Karin Dahlberg, Inger Ekman, Stockholm: Liber, 2017, p. 205-218Chapter in book (Other academic)
  • 33.
    O'Sullivan, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Öhlen, Joakim
    Göteborgs universitet.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Bereaved Family Members' Satisfaction with Care during the Last Three Months of Life for People with Advanced Illness.2018In: Healthcare (Basel, Switzerland), ISSN 2227-9032, Vol. 6, no 4, article id E130Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Studies evaluating the end-of-life care for longer periods of illness trajectories and in several care places are currently lacking. This study explored bereaved family members' satisfaction with care during the last three months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

    METHODS: A cross-sectional survey design was used. The sample was 485 family members of individuals who died at four different hospitals in Sweden.

    RESULTS: Of the participants, 78.7% rated the overall care as high. For hospice care, 87.1% reported being satisfied, 87% with the hospital care, 72.3% with district/county nurses, 65.4% with nursing homes, 62.1% with specialized home care, and 59.6% with general practitioners (GPs). Family members of deceased persons with cancer were more likely to have a higher satisfaction with the care. A lower satisfaction was more likely if the deceased person had a higher educational attainment and a length of illness before death of one year or longer.

    CONCLUSION: The type of care, diagnoses, length of illness, educational attainment, and the relationship between the deceased person and the family member influences the satisfaction with care.

  • 34.
    O'Sullivan, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Öhlen, Joakim
    Göteborgs universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio palliativ vård Dalens sjukhus Stockholm.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Adaptation and validation of the VOICES (SF) questionnaire - for evaluation of end-of-life care in Sweden.2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: Instruments for evaluating end-of-life care by voicing experiences of family members have previously been lacking in Sweden. The objective of this study was therefore to adapt and validate the VOICES (SF) questionnaire to evaluate quality of end-of-life care in Sweden. The VOICES (SF) [Views of Informal Carers - Evaluation of Services (Short form)] is a questionnaire about bereaved relatives' experiences of care in the last three months of life of a deceased family member.

    METHODS: This study was performed based on translation and back translation, cross-cultural adaptation and content validation through cognitive interviewing and feedback from professional experts. For the cognitive interviews, a purposeful sample of 35 bereaved family members was recruited from home care, hospital wards and nursing homes. The participants were 13 men and 22 women (age ranged between 20 and 90+, mean age 66), who were relatives of persons who died from life-limiting conditions. The bereaved family members' and the professional experts' concerns were summarised and analysed based on clarity, understanding, relevance, sensitivity and alternative response/wording.

    RESULTS: The main concerns emerging from the content validation related to the understanding and clarity of some of the questionnaire items', and a few concerns regarding the relevance of different response alternatives or items. Only two of the family members found it emotional to complete the questionnaire, and they still deemed completing it to be important and manageable.

    SIGNIFICANCE OF RESULTS: The VOICES (SF) can be considered as feasible in the Swedish context, provided that cultural adaptation has been achieved, that is translation alone is not enough. The Swedish version will be available for healthcare professionals to use for quality monitoring of the care provided over the last three months in life, and for research, it enables national and cross-national comparisons between different healthcare places and organisations.

  • 35.
    Pettersson, Monica E
    et al.
    Göteborgs universitet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Friberg, Febe
    Göteborgs universitet. Norge.
    Hydén, Lars-Christer
    Linköpings universitet.
    Carlsson, Eva
    Göteborgs universitet.
    Topics and structure in preoperative nursing consultations with patients undergoing colorectal cancer surgery.2017In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 4, p. 674-686Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The preoperative education, which occurs in preoperative patient consultations, is an important part of the surgical nurse's profession. These consultations may be the building blocks of a partnership that facilitates communication between patient and nurse.

    AIM: The aim of the study was to describe topics and structure and documentation in preoperative nursing consultations with patients undergoing surgery for colorectal cancer.

    METHOD: The study was based on analysis of consultations between seven patients and nurses at a Swedish university hospital. The preplanned preoperative consultations were audio-recorded and transcribed verbatim. The structure of the consultations was described in terms of phases and the text was analysed according to a manifest content analysis RESULTS: The consultations were structured on an agenda that was used variously and communicating different topics in an equally varied manner. Seven main topics were found: Health status, Preparation before surgery, Discovery, Tumour, Operation, Symptoms and Recovery after surgery. The topic structure disclosed a high number of subtopics. The main topics 'Discovery', 'Tumour' and 'Symptoms' were only raised by patients and occupied only 11% of the discursive space. Documentation was sparse and included mainly task-oriented procedures rather than patients' worries and concerns.

    CONCLUSION: There was no clear structure regarding preoperative consultation purpose and content. Using closed questions instead of open is a hindrance of developing a dialogue and thus patient participation. Preoperative consultation practice needs to be strengthened to include explicit communication of the consultations' purpose and agenda, with nurses actively discussing and responding to patients' concerns and sensitive issues. The results of the study facilitate the development of methods and structure to support person-centred communication where the patient is given space to get help with the difficult issues he/she may have when undergoing surgery.

  • 36.
    Pohlkamp, Lilian
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Prigerson, Holly G
    USA.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Psychometric properties of the Prolonged Grief Disorder-13 (PG-13) in bereaved Swedish parents.2018In: Psychiatry Research, ISSN 0165-1781, E-ISSN 1872-7123, Vol. 267, p. 560-565, article id S0165-1781(18)30138-0Article in journal (Refereed)
    Abstract [en]

    This study aimed to validate the Swedish version of the Prolonged Grief Disorder-13 tool (PG-13) by examining its psychometric properties, including factor structure, discriminant and concurrent validity. The PG-13 was assessed in a sample of Swedish parents who had lost a child to cancer 1-5 years previously. The sample included 225 parents (133 mothers and 92 fathers) with a mean age of 46.02 years (SD = 8.15) and 16.0% met the criteria for Prolonged Grief Disorder (PGD). A principal component analysis was performed, and the results supported a one-factor structure of the PG-13. The PG-13 was shown to have high internal consistency and intelligible associations with concurrent psychological symptoms and grief rumination as well as with known risk factors for PGD. These results indicate satisfactory psychometric properties of the instrument, thus supporting the use of the PG-13 as a valid measure of PGD.

  • 37.
    Saarnio, Lotta
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Boström, Anne-Marie
    Karolinska institutet.
    Hedman, Ragnhild
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Gustavsson, Petter
    Karolinska institutet.
    Öhlén, Joakim
    Göteborgs universitet.
    Enabling at-homeness for residents living in a nursing home: Reflected experience of nursing home staff.2017In: Journal of Aging Studies, ISSN 0890-4065, E-ISSN 1879-193X, Vol. 43, p. 40-45, article id S0890-4065(17)30226-8Article in journal (Refereed)
    Abstract [en]

    Older people are often living the last period of their lives in institutions such as nursing homes. Knowledge of this period, specifically related to at-homeness which can be described as wellbeing in spite of illness and has been regarded as one of the goals in palliative care, has been very little researched in the context of nursing homes and the experience of nursing home staff. The aim of this study was to explore the experiences of nursing home staff of how to enable at-homeness for residents. Qualitative interpretive description methodology guided the design. The data generation was conducted in winter 2014-2015, when seven repetitive reflective group discussions with staff in a nursing home were held. The results show five patterns for how healthcare staff enabled at-homeness for the residents: Striving to know the resident, Showing respect for the resident's integrity, Creating and working in family-like relationships, Helping to find a new ordinariness and Preparing and making plans to ensure continuity. Nursing home staff seem to have collegial knowledge of how to enable at-homeness for the residents in a nursing home. Close relationships with respect for the resident's integrity stand out as enabling at-homeness.

  • 38.
    Smedbäck, Jonas
    et al.
    Ersta Sköndal University College, Department of Health Care Sciences.
    Öhlén, Joakim
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Årestedt, Kristofer
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Linnéuniversitetet.
    Alvariza, Anette
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen sjukhus, Karolinska institutet.
    Fürst, Carl-Johan
    Lunds universitet.
    Håkanson, Cecilia
    Ersta Sköndal University College, Department of Health Care Sciences. Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Palliative care during the final week of life of older people in nursing homes: A register-based study.2017In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 15, no 4, p. 417-424Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Our aim was to explore the presence of symptoms, symptom relief, and other key aspects of palliative care during the final week of life among older people residing in nursing homes.

    METHOD: Our study employed data from the Swedish Palliative Care Register on all registered individuals aged 60 and older who had died in nursing homes during the years 2011 and 2012. Variables pertaining to monitoring and treatment of symptoms, end-of-life discussions, circumstances around the death, and the individual characteristics of deceased individuals were explored using descriptive statistics.

    RESULTS: The most common underlying causes of death among the 49,172 deceased nursing home residents were circulatory diseases (42.2%) and dementia (22.7%). The most prevalent symptom was pain (58.7%), followed by rattles (42.4%), anxiety (33.0%), confusion (21.8%), shortness of breath (14.0%), and nausea (11.1%). Pain was the symptom with the highest degree of total relief (46.3%), whereas shortness of breath and confusion were totally relieved in 6.1 and 4.3% of all individuals, respectively. The use of valid instruments for symptom assessment was reported for pain in 12.3% and for other symptoms in 7.8% of subjects. The most prevalent individual prescriptions for injection PRN (pro re nata, according to circumstances) were for pain treatment (79.5%) and rattles (72.8%). End-of-life discussions were performed with 27.3% of all the deceased individuals and with 53.9% of their relatives. Of all individuals, 82.1% had someone present at death, and 15.8% died alone. Of all the nursing home resident deaths recorded, 45.3% died in their preferred place.

    SIGNIFICANCE OF RESULTS: There were large variations in degree of relief from different symptoms during the final week of life. Pain was the most prevalent symptom, and it was also the symptom with the highest proportion of total/partial relief. Other symptoms were less prevalent but also less well-relieved. Our results indicate a need for improvement of palliative care in nursing home settings, focusing on management of distressing symptoms and promotion of end-of-life discussions.

  • 39.
    Sveen, Josefin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Pohlkamp, Lilian
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska Institutet.
    Öhlén, Joakim
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Sandberg, Jonas
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan i Jönköping.
    Brandänge, Kristina
    Ersta sjukhus, Stockholm.
    Gustavsson, Petter
    Karolinska Institutet.
    Posttraumatic stress among not-exposed traumatically bereaved relatives after the MS Estonia disaster2016In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203Article in journal (Refereed)
    Abstract [en]

    Background: Little is known about posttraumatic stress (PTS) reactions in bereaved individuals following loss in disaster who were not directly exposed to disaster. The aim of the present study was to examine the course of PTS up to three years after losing relatives in the MS Estonia ferry disaster, one of the worst maritime disasters in modern times.

    Methods: Seven postal surveys were sent out over three years post-disaster. The respondents were invited and added consecutively during the three years and 938 relatives participated in one or more of the surveys, representing 89% of the MS Estonia's Swedish victims. The survey included the Impact of Event Scale (IES) to measure PTS. Latent growth curve modeling was used to analyze PTS over time.

    Results: The majority of bereaved individuals had high levels of PTS. At three years post-loss, 62% of the respondents scored above the recommended cut-off value on the IES. Over time, PTS symptoms declined, but initially high symptoms of PTS were associated with a slower recovery rate.

    Conclusion: The present finding suggests that being an indirectly-exposed disaster-bereaved close-relative can lead to very high levels of PTS which are sustained for several years.

  • 40.
    Ternestedt, Britt-Marie
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Att bli sedd och förstådd i dödens närhet: Dialogens betydelse2017In: Vägen till patientens värld och personcentrerad vård: att bli lyssnad på och förstådd / [ed] Karin Dahlberg, Inger Ekman, Stockholm: Liber, 2017, p. 219-242Chapter in book (Other academic)
  • 41.
    Wolfe, Joanne
    et al.
    USA.
    Jones, Barbara L.USA.Kreicbergs, UlrikaErsta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.Jankovic, MomciloItalien.
    Palliative Care in Pediatric Oncology2018Collection (editor) (Refereed)
    Abstract [en]

    This textbook is the first to focus on comprehensive interdisciplinary care approaches aimed at enhancing the wellbeing of children with cancer and their families throughout the illness experience. Among the topics addressed are the epidemiology of pediatric cancer distress, including physical, emotional, social, and spiritual dimensions; the role of the interdisciplinary team; communication and advance care planning; symptom prevention and management; care at the end of life; family bereavement care; and approaches to ease clinician distress.  The contributing authors are true experts and provide guidance based on the highest available level of evidence in the field. The book has not only an interdisciplinary but also an international perspective; it will appeal globally to all clinicians caring for children with cancer, including physicians, nurses, psychosocial clinicians, and chaplains, among others.

  • 42.
    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.2017In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740Article 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.

  • 43.
    Öhlén, Joakim
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Göteborgs universitet.
    Reimer-Kirkham, Sheryl
    Kanada.
    Astle, Barbara
    Kanada.
    Håkanson, Cecilia
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Lee, Joyce
    Kanada.
    Eriksson, Marjukka
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Sawatzky, Richard
    Kanada.
    Person-centred care dialectics-Inquired in the context of palliative care.2017In: Nursing Philosophy, ISSN 1466-7681, E-ISSN 1466-769X, Vol. 18, no 4Article in journal (Refereed)
    Abstract [en]

    Although a widely used concept in health care, person-centred care remains somewhat ambiguous. In the field of palliative care, person-centred care is considered a historically distinct ideal and yet there continues to be a dearth of conceptual clarity. Person-centred care is also challenged by the pull of standardization that characterizes much of health service delivery. The conceptual ambiguity becomes especially problematic in contemporary pluralistic societies, particularly in the light of continued inequities in healthcare access and disparities in health outcomes. Our aim was to explicate premises and underlying assumptions regarding person-centred care in the context of palliative care with an attempt to bridge the apparently competing agendas of individualization versus standardization, and individuals versus populations. By positioning person-centredness in relation to the hermeneutics of the self according to Paul Ricœur, dialectics between individualization and standardization, and between individuals and populations were constructed. The competing agendas were related in a dialectic manner in the way that population health is of importance for the individual, and standardization is of importance for the population. The analysis suggests that person-centred care is an ethical stance, which gives prominence to both suffering and capability of the individual as a person. The dialectic analysis points towards the importance of extending person-centred care to encompass population and societal perspectives and thereby avoiding a problematic tendency of affiliating person-centred care with exclusively individualistic perspectives. Considerations for person-centred palliative care on micro-, meso- and macrolevels conclude the paper.

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