Parent & Child Perceptions of Child Health after Sibling Death

Abstract

Background Understanding children’s health after a sibling’s death and what factors may affect it is important for treatment and clinical care. This study compared children’s and their parents’ perceptions of children’s health and identified relationships of children’s age, gender, race/ethnicity, anxiety, and depression and sibling’s cause of death to these perceptions at 2 and 4 months after sibling death. Methods 64 children and 48 parents rated the child’s health “now” and “now vs before” the sibling’s death in an ICU or ER or at home shortly after withdrawal of life-prolonging technology. Children completed the Child Depression Inventory and Spence Children’s Anxiety Scale. Sibling cause of death was collected from hospital records. Results At 2 and 4 months, 45% to 54% of mothers’ and 53% to 84% of fathers’ ratings of their child’s health “now” were higher than their children’s ratings. Child health ratings were lower for: children with greater depression; fathers whose children reported greater anxiety; mothers whose child died of a chronic condition. Children’s ratings of their health “now vs before” their sibling’s death did not differ significantly from mothers’ or fathers’ ratings at 2 or 4 months. Black fathers were more likely to rate the child’s health better “now vs before” the death; there were no significant differences by child gender and cause of death in child’s health “now vs before” the death. Conclusions Children’s responses to a sibling’s death may not be visually apparent or become known by asking parents. Parents often perceive their children as healthier than children perceive themselves at 2 and 4 months after sibling death, so talking with children separately is important. Children’s perceptions of their health may be influenced by depression, fathers’ perceptions by children’s anxiety, and mother’s perceptions by the cause of sibling death.

School Aged Children’s Experiences 7 and 13 Months Following a Sibling’s Death

“…Most studies have had parents’ reports of children’s responses which can be different from reports by the children. In a recent study parents rated their children’s health better than children rated their own health in the first 4 months after the sibling’s death (Roche et al 2016). Most studies of sibling responses report on children whose siblings died of cancer (Gerhardt et al 2012; Nolbris and Hellström 2005).…”

“…In addition, research in this area had small samples (Erlandsson et al 2010; Warland et al 2011), mainly White participants (Birenbaum 2000; Gerhardt et al 2012), a wide age range of children in the samples and methodological weaknesses. Most data were collected on parents’ perceptions of surviving children’s responses which often differ from children’s own responses (Lohan and Murphy 2001–2002; Roche et al 2016). 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 (Lancaster 2011; Sood et al 2006).…”

Communication between parents and well‐siblings in the context of living with a child with a life‐threatening or life‐limiting condition

“…Parents may find it difficult to provide well-siblings with emotional support as some parents lack insight into the functioning and mental health of well-siblings. 32 This may, in part, be due to some well-siblings choosing not to share their feelings with their parents, perhaps not wanting to further burden their parents or feeling that their parents lack emotional availability. 24,33 Emotional expression has been found to be significantly lower in a sample of children with a sibling with cancer, relative to a control group of children.…”

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

“…Most studies have largely white samples, 7,19,28 are parents’ reports of children’s responses, 20,21 and are from children whose siblings died of cancer. 15,16 Collecting data at 7 and 13 months post death allowed a view of changes in adolescents’ thoughts and behaviors not possible in cross sectional studies.…”

“…Most data are collected on parents’ perceptions of surviving children’s responses 20,21 which can differ from children’s responses. 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.…”