Long-Term Psychosocial Outcomes Among Bereaved Siblings of Children With Cancer

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; (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-old and their parents had enrolled in one of three prior studies about caring for children with cancer at 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 following 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 their loss still affected them; half stated 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 following sibling death may mitigate poor long-term outcomes.

Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions

“…For example, in a dual-centre survey 68 of 58 bereaved siblings of children with cancer, respondents reported that their anxiety, depression, and substance use increased in the first year following the death of their sibling. Those who felt dissatisfied with the end-of-life communication, who were poorly prepared for the death of their sibling, or who had not had a chance to say goodbye reported higher ongoing distress and lower current social support.…”

Encontrar sentido para continuar viviendo el reto al perder un hijo por cáncer infantil: revisión integrativa

“…A menudo, los cuidados del equipo de salud se concentran en los padres del niño y se deja de lado a los hermanos, quienes también viven una experiencia traumática no solo por la muerte del niño, sino por el abandono no intencionado de sus padres (54,55). Esta revisión puso de relieve lo importantes que son las personas en la vida de los padres que pierden a su hijo a causa del cáncer infantil; en particular, se reportó la importancia de recuperar las relaciones con los otros hijos y cómo, a través de ello, el sentirse necesitado, aporta motivos para continuar viviendo.…”

Adolescents' Experiences 7 and 13 Months After the Death of a Brother or Sister

“…22 Many studies have recruited samples from support groups or advertisements introducing sample bias with data collection up to 20 years after the sibling’s death. 4,23,24 Studies include deaths of newborns to 30-year-old adult children in the same sample. 25 There is very little research on adolescents’ reports of their reactions to sibling death in the NICU/PICU.…”