Abby R Rosenberg1, Andrea Postier2, Kaci Osenga2, Ulrika Kreicbergs3, Bridget Neville4, Veronica Dussel5, Joanne Wolfe6. 1. Seattle Children's Hospital, Seattle, Washington, USA; Fred Hutchinson Cancer Research Center, Seattle, Washington, USA; Treuman Katz Center for Pediatric Bioethics, Seattle, Washington, USA; University of Washington, Seattle, Washington, USA. 2. Department of Pain Medicine, Palliative Care and Integrative Medicine, Children's Hospitals and Clinics of Minnesota, Minneapolis, Minnesota, USA. 3. Childhood Cancer Research Unit, Department of Women's and Children's Health, Karolinska Institute, Stockholm, Sweden; Sophiahemmet University, Stockholm, Sweden. 4. Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA. 5. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Institute for Clinical Effectiveness and Health Policy, Buenos Aires, Argentina. 6. Center for Outcomes and Policy Research, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, Massachusetts, USA; Department of Medicine, Boston Children's Hospital, Boston, Massachusetts, USA. Electronic address: joanne_wolfe@dfci.harvard.edu.
Abstract
CONTEXT: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes. METHODS: Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support). RESULTS: Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P < 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals. CONCLUSION: How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes.
CONTEXT: The death of a child from cancer affects the entire family. Little is known about the long-term psychosocial outcomes of bereaved siblings. OBJECTIVES: To describe 1) the prevalence of risky health behaviors, psychological distress, and social support among bereaved siblings and 2) potentially modifiable factors associated with poor outcomes. METHODS: Bereaved siblings were eligible for this dual-center, cross-sectional, survey-based study if they were 16 years or older and their parents had enrolled in one of three prior studies about caring for children with cancer at the end of life. Linear regression models identified associations between personal perspectives before, during, and after the family's cancer experience and outcomes (health behaviors, psychological distress, and social support). RESULTS: Fifty-eight siblings completed surveys (62% response rate). They were approximately 12 years bereaved, with a mean age of 26 years at the time of the survey (SD 7.8). Anxiety, depression, and illicit substance use increased during the year after their brother/sister's death but then returned to baseline. Siblings who reported dissatisfaction with communication, poor preparation for death, missed opportunities to say goodbye, and/or a perceived negative impact of the cancer experience on relationships tended to have higher distress and lower social support scores (P < 0.001-0.031). Almost all siblings reported that their loss still affected them; half stated that the experience impacted current educational and career goals. CONCLUSION: How siblings experience the death of a child with cancer may impact their long-term psychosocial well-being. Sibling-directed communication and concurrent supportive care during the cancer experience and the year after the sibling death may mitigate poor long-term outcomes.
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