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What Black Parents Should Know Before Joining a Clinical Trial

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Black parents, clinical trial

Clinical trials are an integral part of advancing healthcare. These trials allow researchers to study how new devices, technologies, and medications can change the course of illness treatment and management. When it comes to cancer, there are still many avenues that need to be explored to overcome healthcare disparities–especially when it comes to diagnosing and treating Black people. However, the importance of oncology clinical trials doesn’t change the fact that there are factors that can make it difficult for you to participate. One recurring concern is the availability of childcare. Is that something that oncology clinical trials offer?

What Oncology Clinical Trials Usually Cover

What clinical trials cover can vary. While some of them may provide financial assistance for travel, food, lodging, and doctor’s visits that aren’t covered by insurance, that’s not a guarantee. In some cases, you can even get paid to participate in a clinical trial. However, childcare options can be a little overlooked. 

According to a recent review, about 25 percent of people who have been diagnosed with cancer have dependent children. As a result, the availability of childcare can significantly affect their ability to attend doctors’ visits or access other treatment options. This can be especially true when it comes to clinical trials. Depending on your location, you may need to travel to participate in a clinical trial. While they may cover your travel expenses, there is no guarantee that you’ll be reimbursed for childcare. 

Unfortunately, the review found that the provisions for childcare for those dealing with cancer were severely limited. In several instances, people missed their appointments or had delayed treatments because they were unable to find childcare. At the time, there was only one childcare program in the entire country that was specifically linked to a cancer center. It highlighted the dire need for childcare options for those who are undergoing treatment for cancer. 

RELATED: Considering A Clinical Trial for Cancer? Here’s What You Should Know

How Things May Change in the Future

Fortunately, there may be hope for things to change. In the same review, researchers proposed that the medical community take a different approach to addressing the clear deficit. They suggested that determining someone’s childcare needs should be a part of the medical assessment taken when discussing cancer treatment. Given that over 70 percent of the hospitals surveyed provided childcare services to their staff, it shouldn’t be hard for them to see why it would also be important to their patients.

Furthermore, if healthcare providers use the National Comprehensive Cancer Network (NCCN) distress management guideline to assess their patients, childcare is listed under practical concerns. This inclusion shows that there is already an awareness of how not being able to access childcare can affect not only someone’s treatment schedule but also their overall mental well-being. 

Cost and availability are two factors that can affect your ability to find childcare. When it comes to cost, low-income families may struggle to set aside more money for childcare when they’re already dealing with the cost of their treatment. That’s where government subsidies and charitable organizations can come into play, specifically for those who have been diagnosed with cancer. 

Black parent, clinical trial

In terms of availability, there is a need for childcare options that have extended or more flexible hours. Even if you can afford to pay for childcare, that doesn’t mean the traditional places are going to be open in the hours that you need. That’s why researchers suggest that having more childcare facilities associated with hospitals, clinics, and cancer centers is the way forward. 

Although these changes haven’t been made yet, they may come in the future as more people in the medical community realize how a lack of childcare can impair proper treatment. 

Tips for Getting Childcare While in a Clinical Trial

Just because providing childcare may not currently be the norm for clinical trials, it doesn’t mean you don’t have options. If you’re interested in a clinical trial, it’s best to talk to the trial coordinator to learn all the details. Depending on what the trial requires, they may understand your need for childcare or have helpful resources you can access. 

If the clinical trial doesn’t provide childcare, consider checking out CancerCare for assistance. They have a financial assistance program that provides free care to parents, children, and caregivers who are affected by cancer. While assistance may be limited, you may qualify for their program if you have been diagnosed with cancer by an oncologist, live in the U.S. or Puerto Rico, are in active treatment for cancer, and meet the eligibility criteria based on the Federal Poverty Level (FPL). 

Applying for their assistance starts with an interview to confirm your eligibility. If you meet their criteria, you’ll receive an application to be completed by you and your oncologist. You’ll also need proof of income, your tax returns, and any documents that show you’re receiving government assistance. It’s hard to say how long the application process takes, so if you’re exploring this while participating in a clinical trial, it’s best to start early. 

Calculations of the FPL can vary based on several factors. However, you can view the current guidelines on government websites that provide up-to-date information. Since charitable organizations like CancerCare aren’t able to help everyone, knowing your eligibility for low-income assistance can also lead to other options for childcare. 

For example, there are a few government-based childcare assistance programs that you can explore. States generally receive federal funds to help low-income families with childcare needs. While these are usually aimed at helping you work or attend school, the details may vary depending on the program and your state. States may have financial assistance programs that can be used toward childcare as well. It’s best to find your state on the list and determine which ones may be helpful to you. 

Many factors can influence your decision to join a clinical trial. One that researchers continue to highlight is whether you can find care for your kids when undergoing treatment. While it’s not typical for clinical trials to provide childcare or offer reimbursement if you can find it, that doesn’t mean you shouldn’t ask. Additionally, you should investigate some of the options provided by private organizations and government programs to ensure that you know what’s available. 

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