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  • 1.
    Eilegård, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Bereaved siblings’ experiences of the brother´s or sister’s cancer death: a nationwide follow-up study 2-9 years later2014In: Abstract book: Published in the Journal of Palliative Care and Medicine (Conference Proceeding), 2014Conference paper (Other academic)
  • 2.
    Eilegård, Alexandra
    Karolinska Institutet.
    Betydelsen av kommunikation före och efter förlusten av en bror eller syster i cancer – En nationell långtidsuppföljning2012Conference paper (Other academic)
  • 3.
    Eilegård, Alexandra
    Karolinska Institutet.
    Betydelsen av kommunikation före och efter förlusten av en bror eller syster i cancer – En nationell långtidsuppföljning2012Conference paper (Other academic)
  • 4.
    Eilegård, Alexandra
    Karolinska Institutet.
    Betydelsen av kommunikation före och efter förlusten av en bror eller syster i cancer – En nationell långtidsuppföljning2012Conference paper (Other academic)
  • 5.
    Eilegård, Alexandra
    Karolinska Institutet.
    From interview to a nationwide study on siblings having lost a brother or sister to cancer2009Conference paper (Other academic)
  • 6. Eilegård, Alexandra
    From interviews to a nationwide study on siblings having lost a brother or sister to cancer2009Conference paper (Other academic)
  • 7.
    Eilegård, Alexandra
    Karolinska Institutet.
    Förlustdrabbade syskons upplevelse av deltagande i en forskningsstudie om deras erfarenheter av att ha mist en bror eller syster i cancer.2012Conference paper (Other academic)
  • 8.
    Eilegård, Alexandra
    Karolinska Institutet.
    Förlustdrabbade syskons upplevelse av deltagande i en forskningsstudie om deras erfarenheter av att ha mist en bror eller syster i cancer.2012Conference paper (Other academic)
  • 9.
    Eilegård, Alexandra
    Karolinska Institutet.
    Förlustdrabbade syskons upplevelse av deltagande i en forskningsstudie om deras erfarenheter av att ha mist en bror eller syster i cancer.2012Conference paper (Other academic)
  • 10.
    Eilegård, Alexandra
    Karolinska Institutet.
    Long-Term Consequences of Unresolved Grief In Siblings After Losing a Brother or Sister to Cancer.2012Conference paper (Other academic)
  • 11.
    Eilegård, Alexandra
    Karolinska Institutet.
    Psychological health in siblings who lost a brother or sister to cancer two to nine years earlier.2012Conference paper (Other academic)
  • 12.
    Eilegård, Alexandra
    Karolinska Institutet.
    Psychological Health in Siblings Who Lost a Brother or Sister to Cancer Two to Nine Years Earlier2012Conference paper (Other academic)
  • 13.
    Eilegård, Alexandra
    Karolinska Institutet.
    Sibling perceptions about participation in research regarding the loss of a brother or sister to cancer2010Conference paper (Other academic)
  • 14.
    Eilegård, Alexandra
    Karolinska Institutet.
    The impact of communication prior to and following the loss of a brother or sister to cancer – A nationwide long-term follow-up.2012Conference paper (Other academic)
  • 15.
    Eilegård, Alexandra
    Karolinska Institutet.
    The impact of communication prior to and following the loss of a brother or sister to cancer – A nationwide long-term follow-up.2012Conference paper (Other academic)
  • 16. Eilegård, Alexandra
    To lose a brother or sister to cancer2007Conference paper (Other academic)
  • 17. Eilegård, Alexandra
    To lose a brother or sister to cancer2008Conference paper (Other academic)
  • 18.
    Eilegård, Alexandra
    et al.
    Karolinska Institutet.
    Kreicbergs, Ulrika
    Ersta Sköndal Högskola ; Karolinska Institutet.
    Risk of parental dissolution of partnership following the loss of a child to cancer: a population-based long-term follow-up2010In: Archives of pediatrics & adolescent medicine, ISSN 1538-3628, Vol. 164, no 1, p. 100-101Article in journal (Refereed)
  • 19.
    Eilegård, Alexandra
    et al.
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden ; Sophiahemmet University College, Stockholm, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
    Steineck, Gunnar
    Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
    Nyberg, Tommy
    ology, Gothenburg, Sweden ; Department of Oncology Pathology, Karolinska Institutet, Division of Clinical Cancer Epidemiology, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institutet, Stockholm, Sweden ; Sophiahemmet University College, Stockholm, Sweden ; Department of Oncology Pathology, Sahlgrenska Academy, Division of Clinical Cancer Epidemiology, Gothenburg, Sweden.
    Bereaved siblings' perception of participating in research--a nationwide study.2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 2, p. 411-6Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of the present study is to examine bereaved siblings' perception of research participation.

    METHODS: A Swedish nationwide study on avoidable and modifiable health care-related factors in paediatric oncology among bereaved siblings who lost a brother or sister to cancer between the years 2000 and 2007 was conducted. Data are presented as proportions, and the differences between groups were statistically tested at the 5% significant level using Fisher's exact test.

    RESULTS: Out of 240 eligible siblings, 174 responded (73 %). None of the siblings (0/168) thought their participation would affect them negatively in the long term. However, 13% (21/168) stated it was a negative experience to fill out the questionnaire, whereas 84% (142/169) found it to be a positive experience. Women were more likely to report their participation as positive in a long-term perspective compared with men (p = 0.018).

    CONCLUSIONS: None of the bereaved siblings in this Swedish nationwide study anticipated any long-term negative effect from their research participation. A majority reported it as positive to revisit their needs and experiences throughout their brother or sister's illness and death 2-9 years following the loss. We believe that the stepwise approach used in this study contributed to the high acceptance.

  • 20.
    Eilegård, Alexandra
    et al.
    Karolinska Inst, Div Womens & Childs Hlth, Childhood Canc Res Unit, Stockholm, Sweden ; Sophiahemmet Univ Coll, Stockholm, Sweden ; Karolinska Inst, Div Oncol Pathol, Dept Clin Canc Epidemiol, Stockholm, Sweden.
    Steineck, Gunnar
    Univ Gothenburg, Sahlgrenska Acad, Div Oncol, Dept Clin Canc Epidemiol, Gothenburg, Sweden ; Karolinska Inst, Div Oncol Pathol, Dept Clin Canc Epidemiol, Stockholm, Sweden.
    Nyberg, Tommy
    Karolinska Inst, Div Oncol Pathol, Dept Clin Canc Epidemiol, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Karolinska Inst, Div Womens & Childs Hlth, Childhood Canc Res Unit, Stockholm, Sweden ;Sophiahemmet Univ Coll, Stockholm, Sweden; Karolinska Inst, Div Womens & Childs Hlth, Childhood Canc Res Unit, Stockholm, Sweden.
    Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier.2013In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 22, no 3, p. 683-91Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The objective of this study was to assess long-term psychological distress in siblings who lost a brother or sister to cancer 2 to 9 years earlier, as compared with a control group of non-bereaved siblings from the general population.

    METHODS: During 2009, we conducted a nationwide follow-up study in Sweden by using an anonymous study-specific questionnaire. Siblings who had lost a brother or sister to cancer between the years 2000 and 2007 and also a control group of non-bereaved siblings from the general population were invited to participate. The Hospital Anxiety and Depression Scale (HADS) was used to measure psychological distress, and to test for differences in the ordinal outcome responses between the groups, we used Wilcoxon-Mann-Whitney rank-sum test.

    RESULTS: Among the bereaved siblings, 174/240 (73%) participated and 219/293 (75%) among the non-bereaved. Self-assessed low self-esteem (p = 0.002), difficulties falling asleep (p = 0.005), and low level of personal maturity (p = 0.007) at follow-up were more prevalent among bereaved siblings. However, anxiety (p = 0.298) and depression (p = 0.946), according to HADS, were similar.

    CONCLUSION: Bereaved siblings are at increased risk of low self-esteem, low level of personal maturity and difficulties falling asleep as compared with non-bereaved peers. Yet, the bereaved were not more likely to report anxiety or depression.

  • 21.
    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.

  • 22.
    Eilegård Wallin, Alexandra
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke högskola.
    Lövgren, Malin
    Ersta Sköndal Bräcke högskola.
    Cancer-bereaved siblings advice to peers: A nationwide follow-up survey2019Conference paper (Refereed)
  • 23.
    Eilegård Wallin, Alexandra
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Udo, Camilla
    Dalarna University, School of Education, Health and Social Studies, Social Work.
    Kreicbergs, Ulrika
    Ersta Sköndal Bräcke Högskola.
    Lövgren, Malin
    Ersta Sköndal Bräcke Högskola.
    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.

  • 24. 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. 

  • 25.
    Eilertsen, Mary-Elizabeth Bradley
    et al.
    Sør-Trøndelag University College, Trondheim, Norway.
    Eilegård, Alexandra
    Karolinska Institutet, Stockholm, Sweden.
    Steineck, Gunnar
    Karolinska Institutet, Stockholm, Sweden ; Gothenburg University, Gothenburg, Sweden.
    Nyberg, Tommy
    Karolinska Institutet, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Karolinska Institutet, Stockholm, Sweden ; Sophiahemmet University College, Stockholm, Sweden.
    Impact of social support on bereaved siblings' anxiety: a nationwide follow-up2013In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 30, no 6, p. 301-10Article in journal (Refereed)
    Abstract [en]

    PURPOSE: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up.

    METHOD: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety.

    RESULTS: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively.

    CONCLUSION: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.

  • 26. Lövgren, Malin
    et al.
    Bylund-Grenklo, Tove
    Jalmsell, Li
    Eilegård Wallin, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Kreicbergs, Ulrika
    Bereaved siblings' advice to health care professionals working with children with cancer and their families2016In: Journal of Pediatric Oncology Nursing, ISSN 1043-4542, E-ISSN 1532-8457, Vol. 33, no 4, p. 297-305Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Siblings of children with cancer experience psychosocial distress during the illness and after bereavement, but often stand outside the spotlight of attention and care. This study explored bereaved siblings' advice to health care professionals (HCPs) working with children with cancer and their families.

    MATERIALS AND METHODS: In a nationwide Swedish survey of bereaved siblings, 174/240 (73%) participated. Of these, 108 answered an open-ended question about what advice they would give to HCPs working with children with cancer and their families. In this study, responses to this single question were analyzed using content analysis.

    RESULTS: The most common advice, suggested by 56% of siblings, related to their own support. One third suggested giving better medical information to siblings. Some siblings wanted to be more practically involved in their brother's/sister's care and suggested that HCPs should give parents guidance on how to involve siblings. Other common advice related to psychosocial aspects, such as the siblings' wish for HCPs to mediate hope, yet also realism, and the importance of asking the ill child about what care they wanted.

    CONCLUSION: Information, communication, and involvement should be emphasized by HCPs to support siblings' psychosocial needs in both the health care setting and within the family.

  • 27.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Eilegård, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Bereaved siblings' advice to health-care professionals working with children with cancer and their siblings2014Conference paper (Other academic)
    Abstract [sv]

    Syskons råd till vårdpersonal: En nationell uppföljning 2 till 9 år efter förlusten av en bror eller syster i cancer

    Lövgren, M., Grenklo-Bylund, T., Jalmsell, L., Eilegård, A., Kreicbergs, U.

    Bakgrund: När ett barn drabbas av cancer förändras livet för hela familjen. De friska syskonen kan uppleva minskad uppmärksamhet från föräldrar, svårigheter i skolan samt post-traumatiska stress symtom. För att förbättra situationen för syskon till cancersjuka barn syftar denna studie till att undersöka vilka råd syskon ger vårdpersonal som arbetar med cancersjuka barn och deras familjer.

    Metod: År 2009 genomfördes en rikstäckande enkätstudie av syskon som mist en bror eller syster i cancer två till nio år tidigare. Av 240 inbjudna syskon deltog 174 (73 %). Dessa har svarat på en öppen fråga om vilka råd de skulle vilja ge till vårdpersonal som arbetar med barn med cancer och deras familjer. För att erhålla större förståelse för svaren på den öppna frågan hölls en fokusgruppdiskussion 2014 med syskon som mist en bror eller syster. Data har bearbetats med innehållsanalys. 

    Resultat: Det vanligaste rådet syskonen gav till vårdpersonal var att de ville få psykosocialt stöd. Informationen kring patientens sjukdom och vård behövde förbättras liksom möjligheten för syskon att få vara mer delaktiga i sin bror/systers vård. Syskonen önskade att vårdpersonalen skulle visa mer empati, vara ”naturlig”, samt förmedla hopp men ändå vara realistiska. De önskade stödjande åtgärder från diagnos till år efter dödsfallet. Råd om den fysiska vårdmiljön framkom också liksom vikten av att föräldrarna fick stöd i att få syskonen delaktiga i patientens vård.

    Slutsats: Det behövs en utveckling av interventioner framförallt gällande psykosocialt stöd, information samt involvering av syskon från diagnos till år efter dödsfallet. Stöd till föräldrar om hur de kan involvera syskon bättre behövs också.  

  • 28.
    Lövgren, Malin
    et al.
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing. Karolinska Institute.
    Jalmsell, Li
    Eilegård, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Steineck, Gunnar
    Kreicbergs, Ulrika
    Siblings' experiences of their brother's or sister's cancer death: a nationwide follow-up 2-9 years later2016In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 25, no 4, p. 435-440Article in journal (Refereed)
    Abstract [en]

    Objective

    The aim of this study was to examine siblings' experiences of their brother's or sister's cancer death and if these experiences influenced levels of anxiety 2–9 years later.

    Methods

    This nationwide survey was conducted in Sweden in 2009. All siblings who had a brother/sister who was diagnosed with cancer before the age of 17 years and who died before the age of 25 years during 2000–2007 were invited. Of those, 174 siblings participated (participation rate: 73%). Mixed data from the survey about the siblings' experiences of death were included as well as data from the Hospital Anxiety and Depression Scale. To examine the experiences, descriptive statistics and content analysis were used. Mann–Whitney U-test was conducted to investigate if the experiences influenced anxiety 2–9 years later.

    Results

    The siblings reported poor knowledge and experienced a lack of communication about their brother's/sister's death, for example, about the time frame, bodily changes near death, and about their own experiences. Siblings who reported that no one talked with them about what to expect when their brother/sister was going to die reported higher levels of anxiety 2–9 years after the loss. Seventy percent reported that they witnessed their brother/sister suffering in the last hours in life. Many of those who were not present during the illness period and at the time of death expressed regret.

    Conclusion

    It is important to prepare siblings for their brother's/sister's illness and death as it may decrease anxiety and regrets later on

  • 29. Lövgren, Malin
    et al.
    Sveen, Josefin
    Nyberg, Tommy
    Eilegård Wallin, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Prigerson, Holly G
    Steineck, Gunnar
    Kreicbergs, Ulrika
    Care at end of life influences grief: A nationwide long-term follow-up among young adults who lost a brother or sister to childhood cancer2018In: 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.

  • 30. 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.

  • 31.
    Sveen, Josefin
    et al.
    Institute of Neuroscience, Psychiatry, Uppsala University, Uppsala, Sweden ; Karolinska Institutet Stockholm.
    Eilegård, Alexandra
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden ; Department of Oncology and Pathology, Division of Clinical Cancer Epidemiology, Karolinska Institute, Stockholm, Sweden ; Sophiahemmet University, Stockholm, Sweden.
    Steineck, Gunnar
    Department of Oncology, Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden ; Department of Oncology and Pathology, Division of Clinical Cancer Epidemiology, Karolinska Institute, Stockholm, Sweden.
    Kreicbergs, Ulrika
    Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden ; Department of Oncology and Pathology, Division of Clinical Cancer Epidemiology, Karolinska Institute, Stockholm, Sweden ; Sophiahemmet University, Stockholm, Sweden.
    They still grieve-a nationwide follow-up of young adults 2-9 years after losing a sibling to cancer2014In: Psycho-Oncology, ISSN 1057-9249, E-ISSN 1099-1611, Vol. 23, no 6, p. 658-64Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors.

    METHODS: The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent.

    RESULTS: A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss.

    CONCLUSION: The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death. Copyright © 2013 John Wiley & Sons, Ltd.

  • 32. Vegsund, H. -K
    et al.
    Rannestad, T.
    Reinfjell, T.
    Moksnes, U. K.
    Eilegård Wallin, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Eilertsen, M. B.
    Translation and linguistic validation of a swedish study-specific questionnaire for use among Norwegian parents who lost a child to cancer2018In: Social Sciences, ISSN 2076-0760, E-ISSN 2076-0760, Vol. 7, no 10Article in journal (Refereed)
    Abstract [en]

    Research is needed on how to help cancer-bereaved parents, as they are considered to be a vulnerable population and they are at risk of developing ill health following the loss of a child to cancer. The purpose of the present study was to translate and linguistically validate a Swedish study-specific questionnaire that was developed for Swedish cancer-bereaved parents. The translated questionnaire will be used in a nationwide study in Norway. Methods: Forward and backward translations of the Swedish study-specific questionnaire were conducted, followed by linguistic validation based on telephone interviews with six Norwegian cancer-bereaved parents. Result: It was found that several medical terms and conceptual issues were difficult for the Norwegian parents to understand. There were also four issues regarding the response alternatives. Conclusions: Although Sweden and Norway have quite similar cultures and languages, the results off this pilot study show that, to ensure the quality of a translated questionnaire, linguistic validation as well as translation is necessary.

  • 33. Vegsund, Hilde Kristin
    et al.
    Reinfjell, Trude
    Moksnes, Unni Karin
    Eilegård Wallin, Alexandra
    Dalarna University, School of Education, Health and Social Studies, Caring Science/Nursing.
    Hjemdal, Odin
    Eilertsen, Mary-Elizabeth Bradley
    Resilience as a predictive factor towards a healthy adjustment to grief after the loss of a child to cancer2019In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 14, no 3, article id e0214138Article in journal (Refereed)
    Abstract [en]

    INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss.

    METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss.

    RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief.

    CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.

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