Date of Award

8-16-2024

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Whitney Dobek

Abstract

Caregivers play a vital role in the care of children affected with retinoblastoma as most cases are diagnosed before the age of five years old. While previous studies have explored the psychosocial needs of caregivers of children with pediatric cancer, these have not specifically focused on retinoblastoma in the United States (US). Prior research identified the profound emotional burden in terms of depression, anxiety, guilt, isolation, and loneliness experienced by caregivers. Given previous findings and the National Cancer Institute’s recommendation for genetic counseling and testing for all individuals affected with retinoblastoma, this study aimed to assess psychosocial concerns in relation to genetic counseling specific to retinoblastoma caregivers in the US. An online questionnaire was distributed to social media support groups for current and past caregivers to a child with retinoblastoma to assess experiences in retinoblastoma care and psychosocial distress via free-response questions, multiple choice questions, and validated scales (GAD-7, PHQ-9, GSQ-8, and the Three-Item Loneliness Scale). A total of 57 responses were analyzed and the results suggest retinoblastoma caregivers in the US experience mild anxiety (GAD-7 M=7.6, SD=6.3), depression (PHQ-9 M=5.5, SD=5.6), guilt (GSQ-8 M=5.0, SD=1.8), and loneliness (Three-Item Loneliness Scale M=5.4, SD=5.7). Notably, those who met with a genetic after treatment exhibited the lowest levels of anxiety (GAD-7=1.5) and depression (PHQ-9=1.25). Conversely, those who sought genetic counseling during treatment reported highest anxiety scores (GAD-7 =8.8) and those who had multiple genetic counseling sessions showed the highest average depression scores (PHQ=7.25). While caregivers found genetic counselors and other healthcare providers to provide overall helpful support, caregiver concerns were still evidenced. Concerns centered around risks for future cancers, other health risks, interpersonal relationships, lifestyle implications, unsuitable timing of genetic counseling appointments, and limited information on medical and emotional management. Data from this study suggests genetic counselors for retinoblastoma families should strive to provide more accessible support groups, proactive discussion of possible emotional difficulties, and opportunity for more follow-up appointments. This study supports related findings that there is a significant psychological burden in US retinoblastoma caregivers and gaps in current genetic counseling practice and healthcare.

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© 2024, Kayla Marie Lashinger

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