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.
Objective
To explore cancer-related posttraumatic stress (PTS) reactions in siblings of children with cancer including prevalence, common symptoms, comorbidity with anxiety and depression, and gender and age-related patterns.
Method
A total of 125 children (63 females) between the ages of 8 and 17 (M = 12.4; SD = 2.9 years) with a brother or sister with cancer, diagnosed 4 to 38 months prior to the study (M = 1.3 years; SD = 6.7 months), completed the Child PTSD Symptom Scale (CPSS), Revised Children's Manifest Anxiety Scale, and Child Depression Inventory-Short Form.
Results
Over half of the sample (60%) scored in the moderate to severe range for PTS and 22% fulfilled full criteria for PTSD based upon CPSS responses. Nearly 75% reported “Feeling upset when you think about or hear about the cancer,” and “Trying not to think about, talk about, or have feelings about the cancer.” Over 60% reported arousal symptoms. PTS symptoms reportedly interfered with functioning for 75% of the sample and co-occurred with anxiety and depressive symptoms. Gender and age-related patterns were not found.
Conclusions
Siblings of children with cancer experience cancer-related PTS reactions and greater attention should be paid to ameliorating their cancer-related distress with empirically-based treatments.
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