With the diagnosis and treatment of childhood cancer or serious blood disorders like sickle cell disease comes an emotional rollercoaster for the child and the family. From practical issues including getting to appointments, caring for siblings, and managing the costs of care to psychosocial issues such as anxiety, fear, grief, and even anger, there are needs beyond the medical support physicians and nurses can provide. That’s where Children’s of Alabama’s Hope and Cope Psychosocial and Education Program comes in. The program provides emotional support and services using a family-centered approach in which the family and healthcare providers work together to best meet the needs of the entire family.
“It is becoming more and more important to provide these services to families dealing with cancer and serious blood disorders,” program director Avi Madan-Swain, PhD, said. “Even if we cure the disease medically, for some the cost of cure is high and results in neurocognitive difficulties as well as psychological difficulties, such as post-traumatic stress disorder.”
To reduce stress during hospitalizations or clinic visits, the Hope and Cope Psychosocial and Education Program offers inpatient schooling (either group or bedside); art, music, and animal-assisted therapy; parental consult service; weekly inpatient caregiver dinner support group; and expressive activities such as drumming, drama, and journaling.
The program’s education/school liaisons help patients transition back to school, maintaining communication between the medical team, the child’s school, and the family and providing education to schools and families about special services the child may need. This includes classroom presentations to help classmates understand the child’s diagnosis and treatment.
Once a child is diagnosed with cancer or a serious blood disorder, families complete a screening questionnaire to help the team identify immediate needs. The team shares the results with the family and initiates evidence-based interventions to address identified needs. The overall goal is to prevent crises by intervening early rather than being reactive. The team then meets weekly to discuss the psychosocial needs of newly diagnosed patients and those who have relapsed and need close monitoring. They also talk about any difficulties the patient/family may be experiencing in the inpatient unit or outpatient clinic.
“We’re building wellness and resiliency,” Madan-Swain said. “We’re not just looking at family risk factors, but also their strengths, and developing plans to support young people and their families to manage the challenges of their medical journey, make the most of their strengths, and ultimately celebrate life.”
A new initiative is strengthening psychosocial service delivery for parents of children undergoing bone marrow transplant, Madan-Swain said. “I’ve been working to systematically standardize parent assessment and education and providing psychosocial resources because of the intensity of the process. It’s like being in a pressure cooker.”
One thing that sets Hope and Cope apart from similar initiatives at other children’s hospitals, according to Madan-Swain, is its bereavement component. Services begin when the disease is no longer treatable and continue for two years after a child’s death. All family members work with art and music therapists to create a “legacy piece,” such as a painting, sculpture, or music. For instance, the music therapist may record the child’s heartbeat and place it in a bear for the family. “We found that families who work on meaning-making activities cope much better after the loss of the child,“ Madan-Swain said. “This has really pushed us in the direction of making sure that we’re not waiting until the very end to create a legacy piece.”
Despite the success of the program, Madan-Swain is not resting. “I always want to move on to developing psychosocial care pathways based on family risk level and providing evidence-based interventions and expressive activities to improve adjustment and quality of life for both our oncology and hematology patients and their families,” she said.