Children experience differing changes one year after a sibling's death from cancer

November 16, 2011

The majority of children experience personal changes and changes in relationships one year after their sibling has died from cancer; however, positive and negative changes are not universal. These are the findings from the first study – published online November 3, 2011 in Cancer Nursing – to examine changes in siblings after the death of a brother or sister to cancer from three different perspectives: mothers, fathers and siblings.

Nearly 60,000 children under the age of 20 die each year in the United States and Canada, leaving behind an estimated 480,000 grieving siblings over the past 10 years. Yet, limited research has examined the frequency and nature of changes experienced by siblings after the death of a brother or sister from cancer.

"Studies of bereaved siblings have occurred two months to seven years post-death, but seldom within a year," said Cynthia A. Gerhardt, PhD, principal investigator in the Center for Biobehavioral Health at The Research Institute at Nationwide Children's Hospital and one of the study authors. "Also, rarely are mothers', fathers' and sibling perspectives included in the same study, which allows us to understand sibling grief within the family context."

To address this gap in the literature, Dr. Gerhardt and colleagues interviewed 40 families as part of a multi-site longitudinal study following the death of a child from cancer. During the study, siblings were asked to describe how they have changed since their brother/sister's death. Parents also were asked how the sibling has changed.

Findings showed that the majority of family members perceived that siblings experienced personal changes and changes in relationships after the death. However, change was not universal. Most participants reported either positive or negative changes in siblings' personality rather than both positive and negative.

Siblings reported greater maturity as the most common personal change. More than twice as many siblings reported greater compassion and changes in life priorities than their parents reported for them. Parents reported negative changes in siblings such as being sad, angry, withdrawn or fearful of experiencing another death more often than the siblings did themselves.

A new finding emerged indicating that bereaved siblings were motivated by their deceased brothers or sisters. This finding was unique, as siblings' motivation seemed to stem from an internal desire to be more like their deceased brothers or sisters.

Siblings reported changes in peer relationships more frequently than parents, suggesting that parents may not be as attuned to the effects on important social relationships relative to observable changes in the sibling's personality or emotional well-being.

"There were some differences the kinds of changes parents and children perceived in the siblings," said Dr. Gerhardt, also with The Ohio State University College of Medicine. "Our findings suggest that the assessment of sibling grief responses should involve direct communication not only with parents, but also with siblings."

She says that healthcare providers may encourage families to discuss possible changes that siblings can experience after the death of a sibling. Families may benefit from knowing the positive nature of siblings' reports and by knowing that the death of a brother or sister is profound for some siblings. Providers can provide reassurance that change may not be universal to all bereaved siblings and that the range of positive and negative responses is part of the grief process.

Dr. Gerhardt warns that these findings might not be generalizable to all bereaved as participants in this study were primarily White, English-speaking and included families whose children died of .

"More research is needed to further our understanding of sibling grief in response to other types of loss," she said.

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