key: cord-0839414-655f1u38 authors: Fisher, Allison P.; Patronick, Jamie; Gerhardt, Cynthia A.; Radonovich, Krestin; Salloum, Ralph; Wade, Shari L. title: Impact of COVID‐19 on adolescent and emerging adult brain tumor survivors and their parents date: 2021-05-24 journal: Pediatr Blood Cancer DOI: 10.1002/pbc.29116 sha: 56178a30b76300bba4ebbcd4579ab572ddb553dc doc_id: 839414 cord_uid: 655f1u38 BACKGROUND: The COVID‐19 pandemic has prompted unprecedented challenges, contributing to greater difficulties among families of children with special health care needs, such as pediatric brain tumor survivors. We examined the impact of the pandemic on psychosocial functioning of adolescent and emerging adult survivors and their parents. We hypothesized that COVID‐19 disruptions and survivor social connectedness would be associated with survivor‐reported posttraumatic stress and family outcomes, including family functioning, parenting, and parent mental health. PROCEDURE: Fifty‐five families (44 survivors, 48 parents) were recruited via phone and email to participate in the study. Survivors were ages 13–25 (M = 19.62, SD = 3.47) and at least 5 years post diagnosis. Parents completed the COVID‐19 Exposure and Family Impact Survey (CEFIS), and survivors completed the Environmental influences on Child Health Outcomes (ECHO) COVID‐19 child self‐report form, which assessed pandemic impacts on their psychosocial functioning. RESULTS: Parents reported a mean of 7.52 (SD = 2.83) disruptions to their families’ lives. The pandemic negatively affected survivors’ life satisfaction (M (diff) = 0.46, t(44) = 3.96, p < .001), with 92% reporting reduced social connectedness (n = 39). Total disruptions due to COVID‐19 and survivor social connectedness predicted survivor‐reported posttraumatic stress, above and beyond survivors’ pre‐pandemic psychosocial risk. Most parents reported positive changes in their parenting (n = 31, 67.4%) and family cohesion (n = 30, 66.7%). However, they also reported worsened mood (n = 28, 62.3%) and increased anxiety (n = 31, 71.1%). CONCLUSIONS: Parents and survivors reported positive and negative impacts of COVID‐19, which had downstream consequences on survivor psychosocial functioning. Follow‐up care should consider potential adverse effects on social connectedness and stress symptoms. The COVID-19 global pandemic and the resulting public and government response have introduced abrupt and unpredictable changes to families' daily lives. Stay-at-home orders and physical distancing measures were implemented in the United States beginning in March 2020. School closures were estimated to have impacted 55.1 million students across the United States. 1 This has placed an increased burden on parents to act as educators, with an estimated 30% of remote schooling involving parent instruction. 2 A recent U.S. study found that family communication, relationship quality, and satisfaction decreased due to the pandemic. 3 Studies have documented increases in child mental health symptoms and distress, even though children are less vulnerable to the virus itself. In Italy and Spain, parents reported increased screen time, less physical activity, and more sleep, and a majority reported changes in their children's behavior and emotional state. 4 A Canadian study found that 70.2% of children and adolescents endorsed poorer functioning in at least one mental health domain compared to before the pandemic, and identified social isolation as a significant risk factor. 5 Challenges associated with parenting during a pandemic have affected most families, but caregivers of youth with special health care and/or educational needs may experience additional burden. In Italy, parents of children with a mental or physical disorder reported higher levels of parental burnout and less perceived social support than parents of children without a disorder. 6 Many of these parents reported increases in authoritarian parenting and verbal hostility. Another study found that 65% of parents of children with special education needs reported that the educational support their child received during distance learning was not sufficient. 2 Based on existing evidence of the pandemic's impact, especially for families with pre-pandemic difficulties, we hypothesized that adolescent and emerging adult (AEA) survivors of pediatric brain tumor (BT) would be particularly vulnerable to COVID-19-related distress. Survivors of central nervous system tumors have lower self-reported life satisfaction and health-related quality of life, 7 and are at increased risk for neurocognitive impairments across numerous domains, including executive functioning, processing speed, and academic achievement. [8] [9] [10] [11] These impairments may decrease survivors' ability to participate and learn effectively in distance learning, where they may have fewer educational supports. Social and emotional impairment, including social withdrawal, 12 difficulties with friendships, 13 emotional/affective dysfunction, 12 and depression 8 are also prevalent. Risk factors include treatment variables (e.g., cranial irradiation), 7 tumor size and location, low socioeconomic status (SES), and high stress. 8 Some studies have identified female sex and younger age at diagnosis as risk factors, but results have been mixed. [14] [15] [16] Protective factors include family social support, friend and peer connectedness, 17, 18 survivor self-esteem, 13 and higher SES. 13, 19 Survivors' physical health status and personal relationships, both of which have been disrupted due to the pandemic, have a particularly significant impact on quality of life. 20 In addition to this population's already heightened risk for social iso- 22 we anticipated that survivor social connectedness would be associated with survivor outcomes, above and beyond pre-pandemic risk and COVID-related disruptions. Parents and AEA survivors of BTs were recruited from a Midwest- Parents completed a demographic form, and the survivor's tumor and treatment characteristics were abstracted from chart review to generate their Neurological Predictive Scale (NPS) score. The NPS is a measure used to quantify the cumulative effect of treatment-and tumor-related neurological risk factors. 23 It incorporates factors such as receipt of neurosurgery, type of radiation, receipt of chemotherapy, use of seizure medication, and history of hydrocephaly. The total score ranges between 0 and 11. Prior research has demonstrated the reliabil- Stress Disorder Scale. 29 No psychometric properties are currently available. Parents completed the COVID-19 Exposure and Family Impact Survey (CEFIS), which measured disruptions in families' lives due to the COVID-19 pandemic via 25 yes/no questions (e.g., our children's education was disrupted, we had difficulty getting food, we selfquarantined). The questionnaire also assessed the impact of COVID-19 on family functioning, the caregiver's ability to parent, and the parent's mental health, using a 4-point Likert scale from "Made it a lot better" to "Made it a lot worse." Two questions assessed the parent's and child's overall distress related to COVID-19 on a scale from 1 to 10, with one being "No distress" and 10 being "Extreme distress." The CEFIS was developed in March and April 2020 using a rapid iterative process. Initial validation data indicated excellent internal consistency and supported its use for measuring exposure to COVID-19-related events and the impact of these events on families in pediatric health care settings. 31 Responses on the CEFIS and ECHO were characterized using percent- Table 1 ). Parents were mostly mothers (n = 43, 89.6%) and 45.8% had at least a bachelor's degree (see Table 2 ). One-quarter (26.2%, n = 11) of AEA survivors indicated they were Most AEA survivors (75%, n = 33) indicated the COVID-19 pandemic had a "somewhat" to "extremely negative" impact on their life. Compared to before COVID-19, many AEA survivors indicated (45.2%, n = 19) they felt "less" to "much less" socially connected, 47.6% (n = 20) felt "slightly less" socially connected, and 7.2% (n = 3) felt "more" to "slightly more" socially connected (Figure 2 ). Parents reported a mean of 7.52 (SD = 2.83) disruptions to their lives. Most commonly reported disruptions include a "stay-at-home" order (93.8%, n = 45), closure of schools/childcare centers (89.6%, n = 43), disruption to child(ren)'s education (75%, n = 36), and an inability to visit or care for a family member (68.8%, n = 33). See Table S1 for frequencies and percentages of COVID-19-related disruptions. When examining the seven items that comprised the family impact Table 3 ). In the hierarchical regression, the total number of disruptions due to COVID-19 predicted survivor-reported PTSS, above and beyond psychosocial risk. Disruptions due to COVID-19 explained 15% of the variance in the model. Survivor-reported social connectedness explained 23% of the variance above and beyond psychosocial risk and disruptions due to COVID-19 (see Table 4 ). Total number of disruptions due to COVID-19 did not predict COVID-19′s impact on the family, above and beyond psychosocial risk. Table 3 Step 1: Psychosocial risk a −0.145 −0.612 .001 Step 2: .211 Psychosocial risk 0.059 0.056 Our data suggest that survivors were adversely affected by dis- The most commonly reported disruptions due to COVID-19 were receiving a "stay-at-home" order, school/childcare closures, and disruptions to education. School closures and transitions to remote schooling may have been particularly challenging for BT survivors, due to cognitive late effects associated with their cancer and its treatment. [32] [33] [34] [35] Often, survivors of BT have Individualized Education or 504 plans to support their learning. 36 However, survivors and parents frequently describe gaps in their understanding of their rights to special accommodations and academic supports, particularly in transitioning to college. 37 This uncertainty may be exacerbated in the context of COVID-19. Emerging literature in adolescents with ADHD suggests not all school accommodations (e.g., tutors, counseling) were provided during the transition to remote learning. 38 Additionally, many children receiving school-based services described remote learning as challenging, and parents of children with ADHD had less confidence managing remote learning than parents of children without ADHD. 38 45 Survivorship care clinics could also provide information to AEA survivors and their caregivers on ways to selfmonitor their mental health (e.g., through diaries, phone applications). Unfortunately, over half of parents reported that the pandemic had a detrimental impact on their physical and emotional well-being, and around one-quarter rated their overall distress due to COVID-19 as high. Previous research has demonstrated a significant association between parental mental health and parenting practices. [46] [47] [48] Recent articles documented increases in parenting stress and associations between parenting stress, less structured parenting, and child psychopathology in the context of COVID-19. [49] [50] [51] Despite this, most parents in our study reported improvements in their ability to parent their AEA survivor and other children, with about one-quarter of parents noting the pandemic negatively affected their parenting abilities. Interestingly, the number of disruptions due to COVID-19 were not associated with the pandemic's impact on the family (i.e., the impact of COVID on parenting, parental mental and physical health, and family functioning). Parents may have adjusted their expectations and ratings of family functioning due to the drastic changes in family life related to the pandemic. 3 Additionally, the CEFIS did not assess all the potential impacts of COVID-19 (e.g., not seeing close friends as often) or the length of disruptions. Several limitations of the current study should be noted. Our sample size is small and limited by homogeneity in terms of race and ethnicity. We were unable to compare our sample to a healthy control group. Therefore, we cannot say with certainty that AEA BT survivors and their parents experience the pandemic differently than other populations. It is also important to note that our data were collected over 5 months over the summer and fall of 2020, and participant data were collected across four different states, during which time COVID-19 infection rates and statewide infection control measures varied. Some data were collected during the summer months, and COVID-19's psychosocial impact on survivors and families may have differed when compared to during the school year. We did not assess survivor and family functioning before the COVID-19 pandemic. Instead, questions on the CEFIS and ECHO asked participants to compare their current experiences to their functioning before the pandemic. Therefore, our study is limited by recall bias. Additionally, we did not capture parents' and survivors' fear of contracting the virus, which may impact their outcomes. 52 The ECHO was developed using a rapid iterative process, and psychometric properties have not yet been tested. Finally, our study was cross-sectional and does not inform our understanding of the effects of COVID-19 over time. 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Open Science Foundation Testing the effects of COVID-19 confinement in Spanish children: the role of parents' distress, emotional problems and specific parenting Stress and parenting during the global COVID-19 pandemic Psychological distress during the 2019 coronavirus disease (COVID-19) pandemic among cancer survivors and healthy controls SUPPORTING INFORMATION Additional supporting information may be found online in the Supporting Information section at the end of the article. How to cite this article: Fisher AP We would like to thank the families who participated and the University of Cincinnati University Research Council for funding. The authors declare that there is no conflict of interest. Data are available on request from the authors. Allison P. Fisher https://orcid.org/0000-0003-2344-4256 Jamie Patronick https://orcid.org/0000-0002-9425-5244