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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
Department of Caring Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden; Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden.
Department of Caring Sciences, Palliative Research Centre, Ersta Sköndal University College, Stockholm, Sweden.
Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden; Department of Public Health and Primary Care, Centre for Cancer Genetic Epidemiology, University of Cambridge, Cambridge, United Kingdom.
School of Education, Health and Society, Dalarna University, Falun, Sweden.ORCID iD: 0000-0002-6133-8975
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2018 (English)In: Journal of Palliative Medicine, ISSN 1096-6218, E-ISSN 1557-7740, Vol. 21, no 2, p. 156-162Article in journal (Refereed) Published
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.

Place, publisher, year, edition, pages
Larchmont, New York: Mary Ann Liebert, 2018. Vol. 21, no 2, p. 156-162
Keywords [en]
grief, loss, pediatric cancer, prolonged grief, siblings
National Category
Cancer and Oncology
Identifiers
URN: urn:nbn:se:oru:diva-90711DOI: 10.1089/jpm.2017.0029ISI: 000424027000010PubMedID: 28949788Scopus ID: 2-s2.0-85041675698OAI: oai:DiVA.org:oru-90711DiVA, id: diva2:1539680
Funder
European CommissionSwedish Cancer SocietySwedish Research Council
Note

Funding:

Gålö Foundation

National Cancer Institute

Available from: 2021-03-25 Created: 2021-03-25 Last updated: 2021-11-30Bibliographically approved

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Eilegård Wallin, Alexandra

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