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

Abstract

Abstract

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.