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  • 1.
    Eilegård Wallin, Alexandra
    et al.
    Högskolan Dalarna.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Dalarna högskola.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Karolinska institutet.
    Cancer-bereaved siblings’ advice to peers: A nationwide follow-up survey2019In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683Article in journal (Refereed)
    Abstract [en]

    The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.

  • 2.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna.
    Family talk intervention in paediatric oncology: A pilot study protocol2019In: BMJ Paediatrics Open, E-ISSN 2399-9772, Vol. 3, article id e000417Article in journal (Refereed)
    Abstract [en]

    Introduction There is evidence that families with a child diagnosed with cancer need psychosocial support throughout the illness trajectory. Unfortunately, there is little research into psychosocial interventions for such families, especially interventions where the entire family is involved. The aim of this pilot study is therefore to evaluate a psychosocial intervention, the family talk intervention (FTI), in paediatric oncology in terms of study feasibility and potential effects.

    Methods and analysis This pretest/post-test intervention pilot study is based on families with a child diagnosed with cancer. All families that include at least one child aged 6–19 years (ill child and/or sibling) at one of the six paediatric oncology centres in Sweden between September 2018 and September 2019 will be asked about participation. The intervention consists of six meetings with the family (part of the family or the entire family), led by two interventionists. The core elements in the intervention are to support the families in talking about the illness and related subjects, support the parents in understanding the needs of their children and how to support them and support the families in identifying their strengths and how to use them best. Mixed methods are used to evaluate the intervention (web-based questionnaires, interviews, field notes and observations). Self-reported data from all family members are collected at baseline, directly after the intervention and 6 months later. Study outcomes are family communication, knowledge about the illness, resilience, quality of life and grief.

  • 3.
    Lövgren, Malin
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Melin-Johansson, Christina
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Telling the truth to dying children-End-of-life communication with families.2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed)
  • 4.
    Svenningsson, I
    et al.
    Göteborgs universitet, Region Västra Götaland.
    Petersson, E-L
    Göteborgs universitet, Region Västra Götaland.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna, Center for Clinical Research Dalarna.
    Westman, J
    Karolinska institutet.
    Björkelund, C
    Göteborgs universitet, Region Västra Götaland.
    Wallin, L
    Högskolan Dalarna, Center for Clinical Research Dalarna, Karolinska institutet, Göteborgs universitet.
    Process evaluation of a cluster randomised intervention in Swedish primary care: using care managers in collaborative care to improve care quality for patients with depression.2019In: BMC Family Practice, ISSN 1471-2296, E-ISSN 1471-2296, Vol. 20, no 1, article id 108Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The collaborative care model with a care manager has previously generated beneficial results for patients with depression in terms of decreased burden of depression symptoms. A care manager function has been tested in Sweden in the PRIM-CARE RCT with successful results. The aim of the present study was to evaluate the process of implementing care managers in collaborative care for patients with depression in Swedish primary health care in the PRIM-CARE RCT.

    METHODS: The study followed UK Medical Research Council guidance for process evaluation. Field notes from the implementation of the PRIM - CARE RCT were used, as well as data collected from five focus group discussions with General Practitioners (n = 29) and three focus group discussions with care managers (n = 11). Data were analysed with content analysis.

    RESULTS: Training sessions, careful preparation and extensive initial support to the care manager and staff at the Primary Care Centres were important ingredients in the implementation. The close access to facilitators, the recurrent peer support meetings, and the weekly newsletter strengthened the care manager function.

    CONCLUSIONS: A complex intervention adapted to the Swedish primary care context focusing on a care manager function for patients with depression could be performed through a stepwise implementation process. Financial support from the health care regions included in the study helped to reduce the impact of identified barriers. This process evaluation has revealed new and important knowledge for primary care development concerning infrastructure and organization building, knowledge sharing, and facilitating factors and barriers.

    TRIAL REGISTRATION: NCT02378272 Care Manager - Coordinating Care for Person Centered Management of Depression in Primary Care (PRIM - CARE). Registered March 4 2015. Retrospectively registered.

  • 5. Udo, Camilla
    et al.
    Danielson, Ella
    Henoch, Ingela
    Melin-Johansson, Christina
    Mittuniversitetet.
    Surgical nurses' work-related stress when caring for severely ill and dying patients in cancer after participating in an educational intervention on existential issues.2013In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 5, p. 546-53, article id S1462-3889(13)00022-7Article in journal (Refereed)
    Abstract [en]

    AIM: The aim of this study was to describe surgical nurses' perceived work-related stress in the care of severely ill and dying patients with cancer after participating in an educational intervention on existential issues.

    METHODS AND SAMPLE: This article reports a mixed methods pilot study of an education programme consisting of lectures and supervised discussions conducted in 2009-2010 in three surgical wards in a county hospital in Sweden. The concurrent data collections consisted of repeated interviews with eleven nurses in an educational group, and questionnaires were distributed to 42 nurses on four occasions.

    RESULTS: Directly after the educational intervention, the nurses described working under high time pressure. They also described being hindered in caring because of discrepancies between their caring intentions and what was possible in the surgical care context. Six months later, the nurses described a change in decision making, and a shift in the caring to make it more in line with their own intentions and patients' needs rather than the organizational structure. They also reported decreased feelings of work-related stress, decreased stress associated with work-load and feeling less disappointed at work.

    CONCLUSIONS: Results indicate that it may be possible to influence nurses' work-related stress through an educational intervention. According to nurses' descriptions, reflecting on their ways of caring for severely ill and dying patients, many of whom had cancer, from an existential perspective, had contributed to enhanced independent decision making in caring. This in turn appears to have decreased their feelings of work-related stress and disappointment at work.

  • 6. Udo, Camilla
    et al.
    Danielson, Ella
    Melin-Johansson, Christina
    Mittuniversitetet.
    Existential issues among nurses in surgical care--a hermeneutical study of critical incidents.2013In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 69, no 3, p. 569-77Article in journal (Refereed)
    Abstract [en]

    AIMS: To report a qualitative study conducted to gain a deeper understanding of surgical nurses' experiences of existential care situations. Background.  Existential issues are common for all humans irrespective of culture or religion and constitute man's ultimate concerns of life. Nurses often lack the strategies to deal with patients' existential issues even if they are aware of them.

    DESIGN: This is a qualitative study where critical incidents were collected and analysed hermeneutically.

    METHODS: During June 2010, ten surgical nurses presented 41 critical incidents, which were collected for the study. The nurses were first asked to describe existential care incidents in writing, including their own emotions, thoughts, and reactions. After 1-2 weeks, individual interviews were conducted with the same nurses, in which they reflected on their written incidents. A hermeneutic analysis was used.

    FINDINGS: The majority of incidents concerned nurses' experiences of caring for patients' dying of cancer. In the analysis, three themes were identified, emphasizing the impact of integration between nurses' personal self and professional role in existential care situations: inner dialogues for meaningful caring, searching for the right path in caring, and barriers in accompanying patients beyond medical care.

    CONCLUSION: Findings are interpreted and discussed in the framework of Buber's philosophy of the relationships I-Thou and I-It, emphasizing nurses' different relationships with patients during the process of caring. Some nurses integrate their personal self into caring whereas others do not. The most important finding and new knowledge are that some nurses felt insecure and were caught somewhere in between I-Thou and I-It.

  • 7.
    Udo, Camilla
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna & Center for Clinical Research Dalarna.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Axelsson, Bertil
    Umeå universitet.
    Björk, Olle
    Karolinska institutet.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    Physicians working in oncology identified challenges and factors that facilitated communication with families when children could not be cured.2019In: Acta Paediatrica, ISSN 0803-5253, E-ISSN 1651-2227Article in journal (Refereed)
    Abstract [en]

    AIM: We explored physicians' experiences of communicating with families when their child had cancer and a cure was no longer an option, by focusing on barriers and facilitating factors.

    METHODS: Physicians from the six cancer centres in Sweden took part in focus group discussions between December 2017 and May 2018, and the data were analysed using qualitative content analysis. Focus groups enabled us to gather individual and shared perspectives.

    RESULTS: The 35 physicians (20 male) had a mean age of 47 (range 31-74) and a mean of 11 years' experience in oncology, ranging from under one year to 43 years. They reported communication challenges when a cure was not possible, namely: emotional and mental drain, lack of mutual understanding and uncertainty about communication skills. They also reported facilitating factors: flexibility in complex conversations, the child's position in the conversations, continuity and trusting relationships, support from colleagues and having discussed the potentially life-threatening nature of cancer from the very start of treatment.

    CONCLUSION: Training to overcome communication issues could support the early integration of palliative care.

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

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

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

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

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

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

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

  • 9. Udo, Camilla
    et al.
    Melin-Johansson, Christina
    Danielson, Ella
    Existential issues among health care staff in surgical cancer care - discussions in supervision sessions.2011In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 15, no 5, p. 447-53Article in journal (Refereed)
    Abstract [en]

    PURPOSE: The aim was, through analysis of dialogues in supervision sessions, to explore if health care staff in surgical care discussed existential issues when caring for cancer patients.

    METHOD: A secondary analysis of the content of twelve tape-recorded supervision sessions (18 h) was conducted. The study analysed the dialogue content in supervision sessions involving a group of eight participants who worked at a surgical clinic at a county hospital in central Sweden. The sessions were held every third week during the course of one year.

    RESULTS: The analysis showed that surgical health care staff contemplates existential issues. The staff discussed their existential dilemmas, which hindered them from meeting and dealing with patients' existential questions. This is illustrated in the themes: "feelings of powerlessness", "identifying with patients", and "getting close or keeping one's distance". The staff also discussed the fact that patients expressed existential distress, which is illustrated in the themes: "feelings of despair" and "feelings of isolation".

    CONCLUSIONS: This study shows that there are existential issues at a surgical clinic which health care staff need to acknowledge. The staff find themselves exposed to existential dilemmas when caring for cancer patients. They are conscious of patients' existential issues, but lack strategies for dealing with this. This study highlights a need to provide support to staff for developing an existential approach, which will boost their confidence in their encounters with patients.

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