Siblings’ Cancer-Related Post-Traumatic Stress Symptoms and Involvement in Pediatric Cancer Treatment

Abstract

Objective: Many siblings of youth with cancer experience cancer-related post-traumatic stress symptoms (PTSS). The specific experiences that siblings find traumatic and how PTSS relates to siblings’ involvement in treatment are unknown. This study characterized potentially traumatic cancer-related experiences for siblings and explored the relationship between siblings’ PTSS and involvement in cancer treatment. Methods: Parents (N = 16) and siblings (N = 22) from 16 families completed qualitative interviews about siblings’ involvement in treatment. Siblings completed the Child PTSD Symptom Scale and were categorized into “low” and “high” PTSS groups. Interviews were analyzed using qualitative methods, stratified by PTSS group. Results: Potentially traumatic experiences included: learning the diagnosis, seeing the patient in the hospital, observing physical indicators of cancer, witnessing/hearing about the patient’s medical care or medical emergencies, and seeing other pediatric cancer patients. Treatment involvement themes differed by PTSS group. Siblings with low PTSS gained familiarity with treatment through consistent involvement, were included in involvement decisions, and had opportunities to learn about cancer and express emotions. Siblings with high PTSS had limited/inconsistent treatment involvement, felt minimal control over their involvement, and encountered barriers to accessing cancer information and expressing emotions. Conclusions: Findings inform best practices in family-centered care for siblings of youth with cancer.

Implications for Impact Statement

Through qualitative interviews with siblings and parents of youth with cancer, we identified cancer-related experiences that are potentially traumatic for siblings and explored differences in how siblings with low and high cancer-related post-traumatic stress symptoms are involved in treatment.

Keywords

siblings pediatric cancer treatment involvement post-traumatic stress

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