Barriers to Care and Perceived Need for Mental Health Services Among Adolescent and Emerging Adult Survivors of Pediatric Brain Tumors

Purpose: Pediatric brain tumor survivors (PBTS) commonly experience mental health challenges, which can be exacerbated during adolescence and emerging adulthood (AEA). We examined survivors and caregivers' perceived need for mental health services and barriers to receiving mental health care.Methods: Families completed surveys to assess perceived need for mental health services, socioemotional impairment, and barriers to mental health services. Survivors were between 13 and 25 years of age and were at least 5 years from diagnosis.Results: Sixty-nine caregiver-PBTS dyads participated, as well as 18 survivors and 20 caregivers who participated individually. Approximately half of survivors were male (n = 57, 52.3%), 85% (n = 93) were White, and their average age was 19.31. Most caregivers (n = 63, 70.8%) and survivors (n = 55, 63.2%) endorsed need for services for the survivors. Adolescents endorsed more barriers related to perceived helpfulness, t(18) = 2.3, p = 0.03, d = 0.54, and effects of services, t(18) = 3.8, p < 0.001, d = 0.88, than their caregivers. Emerging adults, t(34) = 2.4, p = 0.02, d = 0.41, endorsed more content barriers than their caregivers..Discussion: Both survivors and their caregivers reported obstacles to accessing mental health services such as perceived lack of need, concerns regarding the effectiveness and usefulness of services, and limited knowledge about the content of services. Psychoeducation and psychosocial screening can support families in understanding survivors' need for mental health services.