Impacts of COVID‐19 on caregivers of childhood cancer survivors

Abstract

Purpose We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID‐19) on caregivers of childhood cancer survivors. Methods A 13‐question survey containing multiple‐choice, Likert‐type, and free‐text questions on experiences, behaviors, and attitudes during the COVID‐19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID‐related experiences, and caregiver well‐being. Results Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow‐up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID‐19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self‐isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID‐19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001) Conclusions Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID‐19. To better serve caregivers and medically at‐risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID‐19 may differentially impact their children.

The effect of anxiety and spiritual well-being on the care burden of caregivers of cancer patients during the COVID-19 pandemic

“…These findings indicate that anxiety significantly increased the care burden of caregivers during the COVID-19 pandemic. In our review of the literature, we found some studies on the effect of COVID-19 on the care burden of PWC caregivers [18,42]. There is also a report stating that most caregivers of dementia patients perceived COVID-19 as a threat to themselves (75%) and the person with dementia (82.1%) [43].…”

“…Ng et al [18] determined that the prevalence of anxiety among PWC, their caregivers, and healthcare workers was 19.1%, 22.5%, and 14.0%, respectively. Wimberly et al [42] reported in their study that 77% of caregivers of childhood cancer survivors had increased feelings of anxiety due to the outbreak. Nearly half (46.8%) of caregivers of older people with neurocognitive disorders were found to have anxiety during the COVID-19 pandemic [49,50].…”

“…In the present study, 36% of the caregivers stated that the pandemic had affected the PWC's treatment and 33.2% stated they had difficulty continuing treatment. Wimberly et al [42] determined in their study that 50% of caregivers of childhood cancer survivors reported delayed/canceled appointments and 19% reported delayed/canceled imaging. Ng et al determined in their study that 72.8% of caregivers of PWC were afraid of COVID-19 [18].…”

COVID-19 Pandemisinde Sağlık Hizmetlerine Erişim: Çocuk Sağlığı Nasıl Etkilendi?

“…ABD'de yapılan çalışmada salgın sırasında bakım vericilerin %26'sı gecikmiş/iptal edilmiş pediatrik onkoloji randevusu, %19'u gecikmiş/iptal edilmiş görüntüleme hizmeti rapor etmiştir. Ayrıca bakım vericilerin %9'u da randevulara ulaşım zorlukları bildirmiştir (55). Benzer şekilde lösemili çocuk anneleriyle yapılan bir çalışmada annelerin çocuklarına enfeksiyon taşımamak için işlerini bıraktığı ve bunun da ekonomik zorluklara neden olduğu, bundan dolayı da çocuğunu hastaneye götürmekte (araç bulma vb.)…”

Assisted reproductive technology and association with childhood cancer subtypes

“…Initiated in 2011, the ALSF My Childhood Cancer (MCC): Survey Series explores families' experiences and attitudes from diagnosis, throughout treatment and follow-up care, and after bereavement (when applicable). 20 To date, 3150 families have participated in the MCC survey series. In this study, we examined responses to the ALSF MCC diagnosis survey completed between August 2012 and April 2019, as prior versions of the survey did not collect data on ART use.…”