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  • 1.
    Carlsson, Nina
    et al.
    Linnéuniversitetet.
    Bremer, Anders
    Linnéuniversitetet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Årestedt, Kristofer
    Linnéuniversitetet; Region Kalmar län.
    Axelsson, Lena
    Sophiahemmet högskola.
    Losing a close person following death by sudden cardiac arrest: Bereaved family members' lived experiences2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 5, p. 1139-1148Article in journal (Refereed)
    Abstract [en]

    The death of a close person has profound impact on people's lives, and when death is sudden there are no possibilities to prepare for the loss. The study aimed to illuminate meanings of losing a close person following sudden cardiac arrest. A qualitative interpretive design was used, and twelve bereaved family members were interviewed. The results show a transition from pending between life and sudden loss during resuscitation and proceeding with life after the sudden loss. These results of being in liminality illuminate the family members' essential narration and the importance of compassionate care throughout this challenging transition.

  • 2.
    Eilegård Wallin, Alexandra
    et al.
    Högskolan Dalarna.
    Udo, Camilla
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Högskolan Dalarna; Centrum för klinisk forskning (CKF), Dalarna.
    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 survey2020In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 44, no 9, p. 561-568Article 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.

  • 3.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Jalmsell, Li
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Lövgren, Malin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska universitetssjukhuset.
    Children’s experiences of the family talk intervention when a parent is cared for in palliative home care: A feasibility study2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1655-1666Article in journal (Refereed)
    Abstract [en]

    The aim with this study was to explore minor children’s experiences of the Family Talk Intervention (FTI) when a parent is cared for in palliative home care, with a focus on feasibility. The main goal of FTI is to increase family communication about the illness. This paper is based on 25 children’s reports, derived from a pilot study with a mixed method design, involving both questionnaires and interviews, performed after the children’s participation. A majority of the children appreciated the structure and content of FTI. They felt seen, heard and acknowledged by the interventionists and recommended FTI to other children in similar situations.

  • 4.
    Eklund, Rakel
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Lövgren, Malin
    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 Palliativ vård Dalen.
    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; Centrum för klinisk forskning, Dalarna.
    Talking about death when a parent with dependent children dies of cancer: A pilot study of the Family Talk Intervention in palliative care2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 10, p. 2384-2394Article in journal (Refereed)
    Abstract [en]

    This study focused on families with dependent children who participated in the Family Talk Intervention (FTI) and lost a parent during the intervention or directly thereafter. The aim was to explore how they perceived information and communication about the imminent death during the illness trajectory and after the loss. Seven families from palliative homecare settings in Sweden participated. This study suggests that it is important to support family communication when a parent is dying, since communication in this situation is unlike everyday family communication, as they enter a complex and existentially unfamiliar area, hard to initiate on their own.

  • 5.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    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.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet.
    How parents of dependent children reason about their partner's impending death due to cancer2023In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 47, no 1, p. 105-110Article in journal (Refereed)
    Abstract [en]

    This paper explores how bereaved parents with dependent children reasoned about their partner's impending death due to cancer. Questionnaires were used to collect data from 42 cancer-bereaved parents of dependent children in Sweden. The results showed that most of the parents had thought, at least once, that death would be best for their partner's own sake. A few parents had also thought that it would be best for everyone if their partner died. Many parents had a wish to keep up hope, no matter what. However, living with a partner with advanced illness and dependent children was described as extremely stressful.

  • 6.
    Holm, Maja
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Sophiahemmet högskola.
    Weber Falk, Megan
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Lövgren, Malin
    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.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Sveen, Josefin
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Uppsala universitet.
    Sources of social support and its importance for cancer-bereaved spouses and their minor children: A cross-sectional study2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 4, p. 996-1002Article in journal (Refereed)
    Abstract [en]

    The aim of this study was to evaluate the sources from which bereaved families with minor children reported receiving social support after the death of a parent/partner and which sources they perceived as important. Using an online platform, 23 adolescents, 42 parents, and 27 parent proxies for children aged 4-11 years, completed questionnaires. Family and friends were valued as the most important sources of social support, while social support from societal institutions, such as health care and school, was considered less important, and insufficient.

  • 7.
    Holm, Maja
    et al.
    Sophiahemmet högskola.
    Årestedt, Kristofer
    Linnéuniversitetet; Region Kalmar län.
    Öhlen, Joakim
    Göteborgs universitet.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Capio Palliativ vård Dalen.
    Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care2020In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 44, no 9, p. 531-539Article in journal (Refereed)
    Abstract [en]

    This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient's death. In total, 117 family caregivers completed all questionnaires. The participants' grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.

  • 8.
    Häger Tibell, Louise
    et al.
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Tema Cancer, BES: Breast-Endocrine Tumours and Sarcoma, Karolinska University Hospital, Stockholm, Sweden.
    Årestedt, Kristofer
    Faculty of Health and Life Sciences, Linnaeus University, Kalmar, Sweden; Department of Research, Region Kalmar County, Kalmar, Sweden.
    Holm, Maja
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Nursing Science, Sophiahemmet University, Stockholm, Sweden.
    Wallin, Viktoria
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Steineck, Gunnar
    Department of Clinical Cancer Epidemiology, Karolinska Institutet, Stockholm, Sweden; Division of Clinical Cancer Epidemiology, Sahlgrenska University Hospital, Gothenburg, Sweden.
    Hudson, Peter
    Centre for Palliative Care, St Vincent´s Hospital and The University of Melbourne, Melbourne, Australia; Vrije University Brussels, Brussels, Belgium.
    Kreicbergs, Ulrika
    Marie Cederschiöld University, Department of Health Care Sciences, Palliative Research Centre, PRC. Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Alvariza, Anette
    Research and Development-Unit/Palliative Care, Stockholms Sjukhem, Stockholm, Sweden.
    Preparedness for caregiving and preparedness for death: Associations and modifiable thereafter factors among family caregivers of patients with advanced cancer in specialized home care2024In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 48, no 4, p. 407-416Article in journal (Refereed)
    Abstract [en]

    The purpose of this study was to (1) explore associations between preparedness for caregiving and preparedness for death among family caregivers of patients with advanced cancer and (2) explore modifiable preparedness factors, such as communication and support. Data was derived from a baseline questionnaire collected in specialized home care. The questionnaire included socio-demographics, the Preparedness for Caregiving Scale, and single items addressing preparedness for death, received support and communication about incurable illness. Data was analyzed using descriptive statistics and Spearman correlations. Altogether 39 family caregivers participated. A significant association was found between preparedness for caregiving and preparedness for death. Received support and communication about the illness was associated with higher levels of preparedness for caregiving and death. This study contributes to evidence on the association between preparedness for caregiving and death, but also that communication and support employed by healthcare professionals could improve family caregiver preparedness and wellbeing. 

  • 9.
    Jalmsell, Li
    et al.
    Uppsala universitet; Visby lasarett.
    Kontio, Taru
    Karolinska institutet.
    Stein, Maria
    Karolinska institutet.
    Henter, Jan-Inge
    Karolinska institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Karolinska institutet; Sophiahemmet.
    On the Child's Own Initiative: Parents Communicate with Their Dying Child About Death2015In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 39, no 1-5, p. 111-117Article in journal (Refereed)
    Abstract [en]

    Open and honest communication has been identified as an important factor in providing good palliative care. However, there is no easy solution to if, when, and how parents and a dying child should communicate about death. This article reports how bereaved parents communicated about death with their child, dying from a malignancy. Communication was often initiated by the child and included communication through narratives such as fairy tales and movies and talking more directly about death itself. Parents also reported that their child prepared for death by giving instructions about his or her grave or funeral and giving away toys.

  • 10.
    Klarare, Anna
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Carlsson, Tommy
    Uppsala universitet; Röda Korsets högskola.
    Mattsson, Elisabet
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences. Uppsala universitet.
    Belonging to a community of care: Mothers' experiences of online peer support groups for parents having lost a child with congenital heart defects2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1741-1749Article in journal (Refereed)
    Abstract [en]

    The aim was to study mothers' experiences of online peer support groups after the death of a child. Participants (N = 8) were recruited through a newsletter for the Swedish association for families/children with heart defects, and two closed support groups on Facebook (900 and 100 members) and interviewed by telephone. Transcripts were analyzed with qualitative content analysis. The groups were available around the clock, regardless of support need, and mothers joined both to receive and provide support. Participation in online peer support groups may provide a sense of belonging to a caring community and serve as a valuable complement to healthcare.

  • 11.
    Pettersen, Rossana
    et al.
    Karolinska institutet.
    Omerov, Pernilla
    Karolinska institutet.
    Steineck, Gunnar
    Karolinska institutet; Göteborgs universitet.
    Dyregrov, Atle
    Center for Crisis Psychology, Bergen, Norway.
    Titelman, David
    Karolinska institutet.
    Dyregrov, Kari
    Center for Crisis Psychology, Bergen, Norway; Norwegian Institute of Public Health, Division of Mental Health, Oslo, Norway.
    Nyberg, Ullakarin
    Karolinska institutet.
    Suicide-Bereaved Siblings' Perception of Health Services2014In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 39, no 6, p. 323-331Article in journal (Refereed)
    Abstract [en]

    We investigated suicide-bereaved siblings' reported reasons for seeking or not seeking professional support, their reported satisfaction when receiving it, and their recommendations to health services when meeting suicide-bereaved siblings. Using qualitative content analysis of 18 interviews with suicide-bereaved siblings, we found that the perception of health services as being helpful was influenced by both the participants' and by the deceased siblings' experiences with health services. We conclude that own and the deceased sibling's unmet needs may generate negative attitudes towards health services, which reduces the likelihood of seeking professional help as well as medication acceptance in some cases.

  • 12.
    Weber Falk, Megan
    et al.
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC.
    Salloum, Alison
    University of South Florida, USA.
    Alvariza, Anette
    Ersta Sköndal Bräcke University College, Department of Health Care Sciences, Palliative Research Centre, PRC. Capio Palliativ vård Dalen.
    Kreicbergs, Ulrika
    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.
    Outcomes of the grief and communication family support intervention on parent and child psychological health and communication2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 7, p. 1750-1761Article in journal (Refereed)
    Abstract [en]

    Parents and children risk developing psychological health problems following the death of a partner/parent and may need professional support. This study used the reliable change criterion and clinically significant change to examine the outcomes of the Grief and Communication Family Support Intervention, comprising three family meetings with a family therapist, among 10 parents and 14 children, using pre-post outcome scores. The results provided preliminary evidence that the Grief and Communication Family Support Intervention may improve self-esteem and reduce anxiety in some parents and may improve communication and reduce internalizing and externalizing problems in some children.

  • 13.
    Weber, Megan
    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.
    Kreicbergs, Ulrika
    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.
    Adaptation of a Grief and Communication Family Support Intervention for Parentally Bereaved Families in Sweden2019In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 45, no 7, p. 528-537Article in journal (Refereed)
    Abstract [en]

    This article aims to describe the adaptation of the evidence-based Family Bereavement Program to a Swedish context. Empirical support indicating that family communication is a protective factor for parentally bereaved children was used to motivate the focus of the intervention. Modules from the Family Bereavement Program manual were translated, culturally adapted, and modified to fit a family format. The manual for the Grief and Communication Family Support Intervention was pilot-tested with two families, which resulted in minor modifications being made to the manual. Therapists reported that they could follow the manual and adapt it to children’s varying ages.

  • 14.
    Weber, Megan
    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.
    Kreicbergs, Ulrika
    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.
    The Grief and Communication Family Support Intervention: Intervention Fidelity, Participant Experiences, and Potential Outcomes2022In: Death Studies, ISSN 0748-1187, E-ISSN 1091-7683, Vol. 46, no 1, p. 233-244Article in journal (Refereed)
    Abstract [en]

    This study aimed to evaluate intervention fidelity and explore participants’ experiences and potential outcomes after participating in the intervention. Using a pretest post-test pilot study, 10 parentally bereaved families completed the three-session manual-based intervention with a family therapist. Sessions were audio-recorded. Therapists completed an adherence checklist to assess fidelity. Assessments via questionnaires and interviews occurred at one month post-intervention and via questionnaires at baseline and six months post-intervention. This study showed a high level of fidelity. The study shows preliminary evidence of the intervention’s capacity to improve communication and relationships in parentally bereaved families.

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