More than medical needs: Four Diamonds provides social support
By Jade Kelly Solovey
When a child is first diagnosed with cancer, the family may be scared and wonder how they will make it through. It’s during that time that the dedicated psychosocial team at Penn State Children’s Hospital introduces them to Four Diamonds.
In addition to the financial support offered to families of children with cancer, Four Diamonds provides holistic, family-centered care by addressing not only the physical but also the mental, emotional and spiritual needs of patients and their families.
Social workers like Greg Baiocchi offer families the silver lining to the childhood cancer cloud in the form of Four Diamonds help.
“Throw a stone into a lake and there’s a ripple effect – the stone being the cancer – and families start realizing how much this situation is going to affect them short term and long term,” he said.
Parents come to realize their family is never going to be the same again.
“We try to reassure families that they’re at the right place and with Four Diamonds’ support they’re not going to need to worry about their child’s medical expenses,” Baiocchi said. From that point on, the family is part of Four Diamonds until their child is five years off treatment, which includes transition into a newly created survivorship clinic.
“Four Diamonds supports those team members who are vital to helping families get through this,” Baiocchi said.
The psychosocial support team is made up of social workers, child life specialists, music therapists, a chaplain, a psychologist and nutritionist – just to name a few – who all do whatever they can to allow children to be children.
“It’s a challenge to maintain normalcy but we want the kids to be able to have fun, do school work and play because that’s a normal part of their regular routine,” Baiocchi said.
The team has also recently added a neuropsychologist to evaluate side effects patients may experience after treatment.
“It can affect them cognitively as far as their ability to learn and process information,” he said.
These services are especially important to brain tumor patients and long term survivors because of late and lasting effects.
The psychosocial support team meets weekly to share information about patients and the family, like how they seem to be coping and adjusting to the illness. They then discuss strategies of how to best meet whatever the child or family’s needs might be.
The team works closely with a psychologist to address any new or preexisting issues the family may have.
“When a child is diagnosed with cancer, the family doesn’t leave their other problems at the front door. Families who come to us may already be in significant stress and then they’re told their child has cancer,” he said. “We pride ourselves on the individualized direct support that we are able to provide for every family.”
That same support and customized service is offered to all families regardless of financial need or background.
The team has also recently added a specialty pharmacist to its list of available services.
“The pharmacist hand carries the child’s medications to the bedside and goes over each medication, what it’s for and how you use it,” Baiocchi said. “Some of these kids can go home with a dozen medications.”
The service has been a huge relief to families who now do not have to stand at the pharmacy for an hour or two waiting on a prescription. And with Four Diamonds there are no copays.
“Anything that’s going to reduce a family’s stress and help with family coping is a plus,” he said.
Social worker Amanda Musser recently joined the team in the Childhood Cancer Survivorship Clinic. The clinic is relatively new. Survivorship is an up-and-coming topic in the oncology world because of the increased cure rates of childhood cancers. Patients who are five years post diagnosis and two years post treatment are transferred to this specialized clinic at Penn State Children’s Hospital to address any issues they have that are unique to childhood cancer survivors.
“It’s important to continue to follow the survivors because of the medical late effects of childhood cancer but also the psychological and social and emotional late effects which can be significant,” Baiocchi said.
“What we focus on is what their health is going to look like down the road, how are the chemo and radiation treatments going to affect them,” Musser said.
Patients and families receive information on many possible issues like heart disease, fertility issues and short attention span. Chemotherapy can cause symptoms similar to attention defect hyperactivity disorder (ADHD) and pediatric cancer patients may have trouble in school.
“We do neuropsychological testing to see if they have had any effects from the chemo that can affect their cognition or memory,” she said.
Musser also focuses on post traumatic stress disorder (PTSD).
“There is a lot of research now saying cancer patients are at a higher risk for having PTSD related to the trauma associated with diagnosis and treatment,” she said.
Musser also watches for depression, anxiety and any kind of mental health symptoms they may be having. During yearly visits to the Survivorship Clinic, every patient always meets with a social worker, nurse, physicians and neuropsychologist.
This kind of specialized care allows patients to be closely monitored and eliminates the wait for any needed testing.
“Cancer survivors have very unique needs compared to the regular population so we want to make sure that they’re seeing someone who understands the uniqueness of the disease and their health history,” Musser said
Since most family doctors do not specialize in childhood cancer they don’t necessarily know how chemo can affect a patient down the road. Patients are followed until 10 years post treatment or their 22nd birthday, whichever milestone is later. At that point, they can transfer to their family doctor.
Musser can also help address issues at home and school and refers families to financial counseling when necessary.
“The conversation comes as to what they’re struggling with and what they’re needing. When I present options, most times parents are pretty willing to pursue the help that’s needed because they already had a relationship with us and know that they’re able to trust us.”
According to Musser, a genetics counselor recently joined the team as well. The genetics counselor will see patients in clinic the same day as their survivorship physician appointment if need be.
Some pediatric malignancies can be a result of a genetic mutation that’s passed from parent to child. It’s important for the patients to know their risk of passing on a gene that may put their children at risk for a pediatric malignancy. Genetic counseling is an optional service provided.
“For the survivorship clinic we’re starting to see some of the kids who are getting a little bit older, some patients who’ve been recently married and thinking about having children,” Musser said. “That’s definitely information they want to know beforehand.”
For information on all of the services Four Diamonds supports, visit FourDiamonds.org.
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