Portal de Periódicos da CAPES

Mental Health & Childhood Cancer

2023; Wolters Kluwer; Volume: 45; Issue: 4 Linguagem: Inglês

10.1097/01.cot.0000920676.29518.c3

1548-4688

Catlin Nalley,

Adolescent and Pediatric Healthcare

“We've been taking our experience—in combination with the research of positive psychology and positivity—to develop different resources for parents in order to navigate these challenging times,” stated Devon Still, MAPP, MBA.: “We've been taking our experience—in combination with the research of positive psychology and positivity—to develop different resources for parents in order to navigate these challenging times,” stated Devon Still, MAPP, MBA.While addressing the clinical needs of pediatric cancer patients is critical, comprehensive care goes beyond disease treatment and management. Children and families contending with cancer face a host of challenges, including an increased risk of major depressive disorders. Therefore, it is paramount that the support they receive includes an emphasis on mental health. Recognizing the importance of holistic support, Devon Still, MAPP, MBA—author, speaker, podcast host, and former NFL athlete—and his daughter, Leah Still, a 7-year survivor of high-risk, pediatric neuroblastoma, are dedicated to helping other families affected by cancer. They founded the Still Strong Foundation in 2015 (stillstrongfoundation.org) to provide assistance to families dealing with a childhood cancer diagnosis. “We want them to spend less time worrying about non-medical bills, like mortgages and utilities, and more time supporting their child to a victorious fight against cancer,” said Devon. The pair recently partnered with United Therapeutics to create mental health resources for families. They participated in a “Mental Health and Childhood Cancer” panel discussion featuring other parents, childhood cancer survivors, and expert clinicians to discuss their journey and help raise awareness of the impact childhood cancer has on mental health. “I didn't take care of my mental health and really struggled the entire time that Leah was battling cancer,” Devon told Oncology Times. “The people around you love and care about you, but most don't know how to support you during a time like this.” Devon recalled hearing things like “stay positive,” but noted that it is hard to understand what that actually means. “When we think about positivity, we think about smiling all the time and just being happy,” he explained. “But as a parent, you often think, ‘How can I smile or be happy when my child is going through something so traumatic?’” His own experience led him on a journey that aimed to help other parents navigate similar situations. “I wanted to learn how to actually stay positive, not just keep a smile on your face, but how to use your positive character strengths and positive belief system in order to reframe your situation so that you can come out on the other end a better person,” said Devon, who recently earned his master's degree in applied positive psychology. As a positive psychology practitioner with specialization in child and adolescent well-being, as well as an assistant instructor at the University of Pennsylvania, Devon has developed different curriculums, including the RISE curriculum, which teaches parents behaviors to help their children rise above adverse childhood experiences. “We've been taking our experience—in combination with the research of positive psychology and positivity—to develop different resources for parents in order to navigate these challenging times.” A Family's Story Leah's cancer journey began in June 2014 when she was diagnosed with Stage IV neuroblastoma at 4 years old. At the time of her diagnosis, Leah was given a 50/50 chance of survival, according to Devon, who noted that she underwent about 18 months of treatment, including clinical trial enrollment. In September 2014, after completing chemotherapy, Leah underwent surgery; however, the treatment had little effect. “At this point, I feared cancer might take my precious daughter from me,” Devon wrote on the Still Strong Foundation website. “I also decided I wanted to give Leah's battle with cancer a purpose and use the platform I had as a professional athlete to raise awareness and help other families.” And on March 25, 2015—following another clinical trial—Leah received the news that she was in remission. “Since then, Leah has endured an aggressive stem cell transplant and many other treatments and challenges which threatened to take her strength, energy, and hope,” Devon said. “But Leah is still strong! She never complained and instead provided strength to those around her.” Today, Leah is in the seventh grade enjoying her life as a middle schooler, engaged in athletics and being around people, “especially my friends,” she said. Focusing on Mental Health With an ongoing shift towards holistic care, there is a growing emphasis on the relationship between cancer and mental health. However, there remains a need for more resources dedicated to patients and families facing pediatric cancer. From his own personal experience, Devon found information addressing the mental health struggles that come with a cancer diagnosis was lacking. “There's an abundance of information regarding the physical changes that a child goes through as they undergo treatment for cancer, but there's not a lot of support or information when it comes to how to protect their mental health during that time,” he said. “And, there's definitely not enough information about how parents can also protect their own mental health. “That's just as important as the physical battle that kids are going through. They need to be mentally strong in order to overcome a lot of the challenges that they're facing,” he continued. “As parents, we only can pour into our kids what we pour into ourselves. So, the more we're able to take care of our mental health, the more we're able to show up for our kids in a way that's effective and helps them through this journey.” Devon also wants to help individuals—both inside and outside of the cancer community—understand that mental health challenges and other difficulties do not end once a child is declared cancer-free or in remission. “There are lifelong effects,” he said. “Childhood cancer completely changes families, whether it is financially, emotionally, spiritually, mentally, etc. You can't just go back to how things were before your child was diagnosed.” Access to interventions and resources from the beginning of the cancer journey can have a significant impact on families, according to Devon, who noted that a lot of parents may not reach out for help because they don't want to be told that there is something wrong with them. “If we can introduce interventions early on and give parents the tools to help them cope with the stress related to a child being diagnosed with cancer, this can go a long way in helping address the mental health issues that they will face,” Devon emphasized. “The earlier we provide parents with these interventions, the more it will help them realize that something's not wrong with them. This is something that everybody deals with when going through this type of battle,” he elaborated. “And, it is equally important to educate the public on the need for ongoing support, not just during treatment, but after treatment ends as well.”“I don't want to feel like this took over my life. It was major, but I don't want people to just know me as the girl that had cancer. And thankfully, I'm not. People know what happened, but they don't always bring it up and I can just be Leah.”: “I don't want to feel like this took over my life. It was major, but I don't want people to just know me as the girl that had cancer. And thankfully, I'm not. People know what happened, but they don't always bring it up and I can just be Leah.”A Message for Providers When asked what they would like oncologists and cancer care providers to know, Devon emphasized the importance of communication and perspective. “An open line of communication is key,” he noted. “It is also important to look at the situation from the perspective of the families. What would it be like as a parent receiving this news?” Recently, Devon had the opportunity to volunteer at the hospital where Leah received her care and he sat down with one of the oncologists who treated her. “She told me that she had a daughter, and I asked her how that changed her,” he recalled. “And she said, ‘I finally understand now what it's like for parents to have to go through something like that. Now that I'm a mom, I can see how much that hurts.’” Training oncologists in a way that teaches them how to place themselves in the parents' shoes, whether they have children or not, will allow for more effective care and create an environment where a family feels heard and a part of the process, Devon noted. “As a parent, we feel like our number one job is to protect our child and when you're in this situation you can't protect them,” he emphasized. “We already lose so much control and so allowing the parent to feel like they're a part of this journey and the decision-making process is really important.” For Leah, she wants to be seen as a person, not just a patient. “This is really important,” she said. “I don't want to feel like this took over my life. It was major, but I don't want people to just know me as the girl that had cancer. And thankfully, I'm not. People know what happened, but they don't always bring it up and I can just be Leah.” Purpose From Pain Together, Devon and Leah are committed to continuing to support and guide other families as they navigate the challenges that come with childhood cancer. “It's about finding ways to recycle our pain and use it for a purpose to help other families in the community,” Devon said. “For me, it's so important to get others to understand that it's not just about treatment. There needs to be support at all levels, not just during diagnosis and treatment, but also after treatment as well.” Devon doesn't want another parent to have to struggle the way he did. “I didn't have the resources I needed and if the resources were out there, I wasn't made aware of them,” he said. “I had to figure it out on my own. Whenever there is ignorance, there is experimentation and you don't want to experiment with your mental health, especially during this time because so much is on the line. “The resources are needed in this community,” Devon reiterated. “And the awareness that there are resources out there for families is just as important because there's no point of a book sitting on a bookshelf if parents don't know that they can read it and help them through this journey.” With this in mind, Devon and Leah are looking forward to continuing their advocacy efforts for the childhood cancer community. As for what comes next for Leah, she is focused on school and excited about what the future holds. “When the time comes, I want to go to college,” she said. “I want to be a lot of things and do a lot of things, but right now I want to be a doctor. I'm not sure what type of doctor, but I know I want to help people.” Catlin Nalley is a contributing writer.