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  • 1.
    Eilegård Wallin, Alexandra
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet.
    Steineck, Gunnar
    Nyberg, Tommy
    Kreicbergs, Ulrika
    Insufficient communication and anxiety in cancer-bereaved siblings: a nationwide long-term follow-up2016In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. October, p. 488-494Article in journal (Refereed)
    Abstract [en]

    Objective: The purpose of this study was to examine siblings’ long-term psychological health in relation to their perception of communication with their family, friends, and healthcare professionals during a brother or sister's last month of life.

    Method: A nationwide questionnaire study was conducted during 2009 in Sweden of individuals who had lost a brother or sister to cancer within the previous two to nine years. Of the 240 siblings contacted, 174 (73%), participated. The Hospital Anxiety and Depression Scale (HADS) was employed to assess psychological health (anxiety). The data are presented as proportions (%) and relative risks (RR) with a 95% confidence interval (CI 95%).

    Results: Siblings who were not satisfied with the amount they talked about their feelings with others during their brother or sister's last month of life were more likely to report anxiety (15/58, 26%) than those who were satisfied (13/115, 11%; RR = 2.3(1.2–4.5)). The same was true for those who had been unable to talk to their family after bereavement (RR = 2.5(1.3–4.8)). Avoiding healthcare professionals for fear of being in their way increased siblings’ risk of reporting anxiety at follow-up (RR = 2.2(1.1–4.6)), especially avoidance in the hospital setting (RR = 6.7(2.5–18.2)). No such differences were seen when the ill brother or sister was cared for at home.

    Significance of results: Long-term anxiety in bereaved siblings might be due to insufficient communication. Avoiding healthcare professionals, especially when the brother or sister is cared for at the hospital, may also increase the risk of anxiety.

  • 2. Eilertsen, Mary
    et al.
    Lövgren, Malin
    Eilegård Wallin, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Kreicbergs, Ulrika
    Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up2018In: 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. 

  • 3. Lind, S.
    et al.
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet; Göteborgs universitet.
    Furst, C. J.
    Beck, I.
    The integrated palliative care outcome scale for patients with palliative care needs: Factors related to and experiences of the use in acute care settings2019In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523Article in journal (Refereed)
    Abstract [en]

    ObjectiveImplementation of patient-reported outcome measures for patients with palliative care needs is characterized by both enablers and barriers. The ways in which healthcare professionals experience the use of assessment tools is important. Our aims were to explore factors contributing to or hindering patients with palliative care needs in assessing their symptoms with the Integrated Palliative Care Outcome Scale (IPOS) and to explore healthcare professionals' experiences of the use of IPOS in acute care settings.MethodData were collected as a part of the evaluation of the feasibility of an implementation strategy for introducing IPOS. Data from three participating acute care units were included. We used descriptive and analytical statistics; a qualitative content analysis was also performed.ResultA total of 309 patients were eligible to be offered assessment of symptoms with IPOS. Of these 69 (22%) had completed IPOS. A significant positive association was found between healthcare professionals' participation in training sessions and completed IPOS. The experiences of IPOS were split into two categories: "IPOS acting as a facilitator" and "barriers to the use of IPOS." The use of IPOS was described as contributing to person-centered care of patients with palliative care needs and inspiration to improved routines. Healthcare professionals' feelings of uncertainty about how to approach severely ill patients and their family members appear to have hindered their use of IPOS.Significance of resultsWe found an association between healthcare professionals' participation in training sessions and patients who completed IPOS, indicating the need for a high degree of attendance at the training to achieve successful implementation. The healthcare professionals expressed feelings of insecurity concerning the use of IPOS indicating a need for further education and clinical support in its use of IPOS. Nevertheless, use of IPOS was considered to contribute to improved care of patients with palliative care needs.

  • 4. Lind, Susanne
    et al.
    Sandberg, Jonas
    Fürst, Carl Johan
    Wallin, Lars
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska institutet; Göteborgs universitet.
    Implementation of Integrated Palliative Care Outcome Scale in acute care settings: a feasibility study2018In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 16, no 6, p. 698-705Article in journal (Refereed)
    Abstract [en]

    Objective

    Although hospitals have been described as inadequate place for end-of-life care, many deaths still occur in hospital settings. Although patient-reported outcome measures have shown positive effects for patients in need of palliative care, little is known about how to implement them. We aimed to explore the feasibility of a pilot version of an implementation strategy for the Integrated Palliative care Outcome Scale (IPOS) in acute care settings.

    Method

    A strategy, including information, training, and facilitation to support the use of IPOS, was developed and carried out at three acute care units. For an even broader understanding of the strategy, it was also tested at a palliative care unit. A process evaluation was conducted including collecting quantitative data and performing interviews with healthcare professionals.

    Result

    Factors related to the design and performance of the strategy and the context contributed to the results. The prevalence of completed IPOS in the patient's records varied from 6% to 44% in the acute care settings. At the palliative care unit, the prevalence in the inpatient unit was 53% and the specialized home care team 35%. The qualitative results showed opposing perspectives concerning the training provided: Related to everyday work at the acute care units and Nothing in it for us at the palliative care unit. In the acute care settings, A need for an improved culture regarding palliative care was identified. A context characterized by A constantly increasing workload, a feeling of Constantly on-going changes, and a feeling of Change fatigue were found at all units. Furthermore, the internal facilitators and the nurse managers’ involvement in the implementation differed between the units.

    Significance of the results

    The feasibility of the strategy in our study is considered to be questionable and the components need to be further explored to enhance the impact of the strategy and thereby improve the use of IPOS.

  • 5. Lövgren, Malin
    et al.
    Sveen, Josefin
    Steineck, Gunnar
    Eilegård Wallin, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Eilertsen, Mary-Elizabeth B
    Kreicbergs, Ulrika
    Spirituality and religious coping are related to cancer-bereaved siblings' long-term grief2019In: Palliative & Supportive Care, ISSN 1478-9515, E-ISSN 1478-9523, Vol. 17, no 2, p. 138-142Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: 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.

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