Dr. Avi Madan-Swain, is an associate professor of pediatrics and director of the Hope and Cope Psychosocial Program in the Division of Pediatric Hematology-Oncology at Children’s of Alabama. She has worked extensively with children diagnosed with cancer and other blood disorders and their families in both inpatient and outpatient settings.
Most people know that the Alabama Center for Childhood Cancer and Blood Disorders at Children’s of Alabama provides cutting-edge cancer treatments. But our care goes well beyond the lifesaving surgeries, chemotherapy and radiation therapy. Since 2008, our Hope and Cope Psychosocial Program has been providing support and services from diagnosis onward using a family-centered approach, where the family and health care providers are partners working together to best meet the needs of the patient.
Our interdisciplinary Family Support team, consists of skilled and compassionate specialists, including social workers, child life specialists, pediatric psychologists, pediatric neuropsychologists, chaplains, hospital-based teachers, school liaisons, art and music therapists, as well as a rhythm drumming specialist to provide emotional, psychological and spiritual support and also assist with concrete needs. Theyfocus on identifying family strengths and resiliency factors, as well as risk factors, and provides evidence-based interventions. Some families need emotional help. Some need financial help. Some need spiritual help.
To ease the stress and distress from frequent hospitalizations or lengthy outpatient visits, the Hope and Cope Psychosocial Program offers a variety of emotional health and well-being activities including: Art/Music/Drumming and Rhythm Circle, Beads of Courage, Gardening on the Terrace, group school or bedside instruction, STAR (School/Social Transition & Re-entry), Hand in Paw Animal-Assisted Therapy, Hand of Hope Volunteers, individual therapy for patients or family members to help with specific individual challenges being faced, Parent 2 Parent Mentoring, as well as a weekly inpatient Caregiver Dinner Support Group to give families a break from hospital food. Many of these activities are made possible through partnerships with local community businesses and organizations.
Many of our diversionary activities are popular and fun. For example, our rhythm drumming attracts entire families and allows them to express themselves through music. We plan on soon adding drama therapy, and hope to have all of our patients work together on a theatrical production describing their medical journey.
On the more practical side, our STAR initiative focuses upon the often complex educational needs of childhood cancer patients. School is one of the most important parts of a child/teen’s life. Focusing on school helps the child/teen look to the future and is a step toward returning to a more normal lifestyle. We believe that when a child/teen diagnosed with cancer or a blood disorder is medic ally able, they should return to classroom. It is important to keep children on track with their education, because it sends a strong message about our confidence in their continued growth and development. We offer group school daily in the hospital, along with bedside instruction when the child is medically unable to attend.
Our STAR team school liaisons work with education systems to help cancer survivors successfully transition back to school. The school liaisons work closely with the family and serve as a link to provide ongoing communication between the hospital and school. When the child/teen is ready to attend school regularly, the school liaisons work with the child/teen, parent and school personnel to develop an individualized school re-entry plan to ensure a smooth transition.
STAR school liaisons also teach parents how to navigate the educational system. They learn about their child’s learning difficulties that are associated with the cancer diagnosis and treatment, their child’s educational rights and how to successfully advocate on their behalf. Sometimes our school liaisons attend school meetings to help ensure that educational accommodations are included in the child’s educational program. The school liaisons advise parents on what is reasonable to expect from schools and connect them to resources that help ensure those expectations are met.
Childhood cancer survival rates have risen dramatically in recent decades, but not all children win their battle against cancer. The Hope and Cope Psychosocial Program has designed activities to assist children with a terminal diagnosis. For instance, our art therapist works with the patient and their family to create a “legacy” piece of art that serves as a remembrance after the child’s death. Additionally, we host an annual “Honoring Their Journey” memorial service for families who have lost their child to cancer or blood disorder in the past year. It is a time for families to reconnect with staff and share memories.
It’s important that parents become active participants in their child’s medical care; after all, no one knows their child better than they do! Parents are equal partners on their child’s care team, and their voices needs to be heard during family-centered rounds. Through sharing information openly and honestly, the medical team, patient and family work collaboratively to develop daily goals as well as discharge goals. Parents need to be engaged and empowered. They need to feel comfortable asking questions and providing input during daily inpatient rounds or outpatient visits.
Childhood cancer knows no boundaries. It can strike young children and older children. It can strike the wealthy and the impoverished, black or white. Similarly, the needs of a family are boundless, too, and vary widely. Until childhood cancer is eliminated, the Hope and Cope Psychosocial Program is here to empower young people and their families to foster a sense of healing throughout the medical journey.