Objective To determine how to improve care for families by obtaining their advice to healthcare providers and researchers after a child’s death from cancer. Design Families with a surviving sibling (ages 8-17) were recruited from cancer registries at three hospitals in the United States and Canada 3-12 months (M = 10.4, SD = 3.5) after the child’s death. Setting Data were collected in the home. Participants Participants (N = 99) included 36 mothers, 24 fathers, and 39 siblings from 40 families. Outcome Measures Each participant completed a qualitative interview that was audio recorded, transcribed, and coded for thematic content. Findings Five major themes included the need for: (a) improved communication with the medical team, (b) more compassionate care, (c) increased access to resources, (d) ongoing research, as well as (e) offering praise. Interwoven within the five themes was a subtheme of continuity of care. Conclusions Many participants were pleased with the care the child with cancer received, but others noted areas in need of improvement, particularly medical communication and continuity of care. Additional research is needed to inform interventions to improve services for families of children with life-limiting conditions.
Few studies have distinguished similarities and differences between continuing bonds as they appear in various bereaved populations, particularly parent versus sibling cohorts following a child's death. This mixed-method study compared how parents and siblings experienced continuing bonds in 40 families who lost a child to cancer. Thirty-six mothers, 24 fathers, and 39 siblings were recruited 3-12 months post-loss (M = 10.7, SD = 3.5). Nearly all participants (97%) reported engaging in purposeful bonds with deceased children, while only 14% reported nonpurposeful connections. Over half of participants (58%) experienced comforting effects from reminders of the deceased child, while only 10% of family members experienced discomforting effects. Mothers communicated with the deceased, thought about the deceased, and did things that the deceased child would have liked more often than siblings. Mothers also reported significantly more comforting effects than siblings. Additional research is needed to further delineate continuing bonds for different types of loss and examine associations with positive and negative outcomes for bereaved individuals.
Despite a growing bereavement literature, relatively little is known about what families find helpful after a child’s death and how best to assist them during the grieving process. This qualitative study explored advice from 40 families (65 parents, 39 siblings) of children died who cancer 6–19 months earlier. Content analysis emphasized the individual nature of grief and revealed advice that fit into three temporal categories: before the death, soon after, and long-term. Findings are discussed in the context of contemporary theory and provide insight into the development and timing of grief interventions.
Background Few studies have examined changes in siblings after the death of a brother or sister, particularly from mother, father, and sibling perspectives within the first year post-death. Objective This descriptive study identified and assessed the frequency of changes in siblings after a child's death from cancer. Methods Participants were recruited from cancer registries at three hospitals in the U.S. and Canada 3–12 months after the child's death. Thirty-six mothers, 24 fathers, and 39 siblings from 40 families were included. Semi-structured interviews using open-ended questions were conducted with each parent and sibling separately in the home. Content analysis identified emerging themes, and McNemar tests compared frequencies between each paired set of reports (sibling vs. mother, sibling vs. father, mother vs. father). Results Sixty-nine percent of participants reported personal changes in siblings (e.g., changes in personality, school work, goals/life perspective, activities/interests). Forty-seven percent noted changes in siblings' relationships with family members and peers. Only 21% of participants reported no changes attributed to the death. Comparisons of frequencies across informants were not significant. Conclusions Most siblings experienced changes in multiple areas of their lives after the death of a brother or sister to cancer. Some changes reflected siblings that were positively adapting to the death, while other changes reflected difficulties. Implications for practice Our findings offer guidance to improve aftercare for bereaved siblings and their families. Additional research is needed to further delineate the needs of bereaved siblings and to develop strategies to promote adaptation to loss.
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