Financial Strain and Extraordinary Stress: COVID-19 Feedback from Childhood Cancer Families
We’ve been surveying families of children with cancer and childhood cancer survivors this spring to find out some of the top issues and challenges you’re facing as the COVID-19 pandemic continues to impact daily living. The survey remains open, and we’re still listening and learning from you. As always, your feedback informs our policy work and helps us fight for impactful legislative solutions to the most pressing problems in our community during this challenging time.
Approximately 60 percent of those who took our survey to date are caregivers of childhood cancer survivors — i.e. children who are no longer in active treatment but who still require routine monitoring and follow-up care. Caregivers of children in active treatment made up 25% of respondents, and 15% are adult survivors of childhood cancers.
Here’s what we’ve learned so far:
Delays in Treatment
Experiences regarding disruptions to treatment or care vary widely and are complicated.
The majority of respondents have not experienced a delay in treatment or follow-up care — but we suspect this may be due in part to the fact that many of the responses come from families who do not have a child in active treatment so survivorship care might not have been regularly scheduled for this spring, regardless.
This statistic also masks the extra difficulties faced by those who are able to keep appointments. For instance, traveling to appointments is more challenging, especially for patients who must travel by plane.
One parent reports the stress of a new hospital rule that only lets one parent stay with their child: “I struggle with anxiety, and not having that extra support system at the hospital has been really hard for me.”
Approximately 30 percent did report experiencing a delay in care. Several parents of children in remission reported that regular scans and clinic visits have been pushed back. In one case, an annual checkup has been delayed by a full six months.
Caregivers expressed their understanding of the complexities of the situation but also their fear for what these delays might mean for their child’s fragile health. A parent of a medulloblastoma survivor expressed concern that their child is having multiple issues and is at a point of time with a moderate risk for relapse: “I NEED to have this MRI regularly, for all our sakes.”
“There is an area of concern in our daughter that we have been watching and scanning,” another parent wrote. “This area has remained stable for several months so it is probably fine, but it concerns us that the follow-up has been delayed.”
And some caregivers are fearful of the exposure risk involved with attending appointments — in some cases choosing to delay non-critical appointments themselves. “I’m nervous to take my son to the hospital for any follow-up visits until there is a vaccine,” said one parent. Another parent agreed: “Having to take my daughter to appointments and scans is nerve-wracking, and I hate that I have to go out and risk it in a hospital setting.”
Two-thirds of the childhood cancer families we heard from report experiencing a reduction in income as a result of COVID-19. Nearly 30 percent reported a loss of employment.
COVID-19’s financial blow to families and survivors is devastating, as many of these families were already overburdened with medical bills and household expenses.
One parent expressed frustration about the uncertainties about when employment opportunities will return. “Since we are unable to anticipate when work will return, we are unable to make plans for the future.”
Employment is often tied closely with insurance, which can pose additional challenges. While most of the families we heard from have not experienced a disruption in insurance coverage, some have. One mom shared with us that she has two adult children who are cancer survivors, both of whom need ongoing survivorship care and mental health services. One young adult is able to work remotely and maintain her job and insurance coverage but her sibling installs lifts at ski resorts. He is now home, on unemployment, and uninsured.
“Income is the biggest issue for us right now,” said another parent. “We have four kids, one with cancer. Only one parent is able to work. Not being able to afford rent, fuel, car payments and insurance is very difficult.”
One mother reported that she quit her job as a grocery clerk because her child is a survivor and the risk seemed too great that she might bring COVID-19 home from work. “I don’t regret the decision, but the income we lost is not easy to fix.”
For those experiencing financial strain, we urge you to utilize the Hope Portal, where you can search by your location, diagnosis, and need to find nonprofit organizations that are helping to alleviate the financial burdens of families battling childhood cancer.
The mental and emotional toll of COVID-19 is suffocating many childhood cancer families.
One common thread that rings loudly through the survey responses is a sense of overwhelming anxiety, exacerbated by social isolation. Parents commonly referenced COVID-19 as a PTSD trigger:
“Isolation has triggered my child’s PTSD. Our anxiety is at an all-time high.”
"Raised anxiety levels about getting sick.”
“The COVID-19 crisis has certainly brought back the feelings of isolated and health concerns that were prevalent during my daughter’s treatment.”
“Just scary. Trying to keep my survivor healthy.”
“The anxiety I have felt has made me very aware of how much PTSD I have. It feels like my son is in treatment all over again. I have had so much anxiety over him getting sick that I actually got sick this month! (tested negative for covid). I’ve missed most of the month due to anxiety and stress-related illness/depression.”
“Increased anxiety and fear of death."
“It has increased the amount of fear we face to do everyday tasks again.”
“Just made us more paranoid - more than we are usually.”
“I have fear of catching COVID and how that would impact my long-term side effects (such as lung damage). Currently I can work from home but as that is lifted I’ll be forced back into an environment where the potential for catching it is high. I can’t choose not to work : I support two kids.”
Some families are reporting taking drastic measures to keep their medically fragile child as isolated as possible, including relying solely on grocery delivery services so that no family members are leaving the home for any reason and leaving mail in the garage for a full week before opening.
And - just like during a child’s cancer treatment - this stress impacts the whole family. “My other child who is totally healthy doesn’t want to go outside at all,” says one parent. “I told her it would be fine to walk around near home but she fears and doesn’t want any risk.”
Even those who have not suffered a financial blow or a delay in care note the mental burden of this situation: “Other than being a PTSD trigger, we have not been overly impacted by COVID-19,” said one parent.
For those who are struggling, our COVID-19 Resource Page includes a section on psychosocial resources.
Childhood cancer families are in many ways experts at social isolation — but that doesn’t make it any easier.
Some parents expressed frustration that their child has already had to endure long periods of social isolation because of their cancer — and now this. “We just started to get back to being a normal family, and now we have to go back into quarantine,” said one parent. “Emotionally, I wish she could have had more time as a normal kid.”
Another parent echoed this frustration: “My daughter struggled with the idea of social distancing and isolating at home because she felt that she had lost enough of her life and experiences to pediatric cancer.”
“It is entirely understandable that addressing COVID concerns is a priority for us as a nation. However, cancer did not go away, and I am concerned that pediatric cancer awareness and funding will lose ground gained in recent years. We cannot afford to let that happen for our fighters, survivors, and future cancer kids.”
- childhood cancer parent
As we continue to pursue ongoing progress against childhood cancer in the face of this pandemic, we encourage you to keep sharing your insights. If you have a child with cancer, a child who is a survivor, or you are a survivor yourself, please share your own experiences, either through our survey or just send us a quick note right here: