One of the lessons Avi Madan-Swain learned early in life was the importance of seeing the beauty and good in individuals and reaching out to provide a helping hand to those in need. She observed this directly through her experiences as a young woman studying to be a teacher and working at a school for multi-handicapped children in Kolkata (previously known as Calcutta), India. It was the only school in Kolkata that provided services to school-aged children regardless of their ability to pay. Several of the children came from an orphanage run by Mother Teresa. She was impressed by the fact that Mother Teresa took the time to come to school meetings and was genuinely interested in each child’s progress. Madan-Swain also worked briefly in the Home for the Dying, where those left to perish on the streets were brought daily and provided caring and solace during the last hours of their life by Mother Teresa and other nuns in the Missionaries of Charity. Meeting and talking with Mother Teresa had a profound impact on Madan-Swain’s life. She learned much about being nonjudgmental, compassionate and providing unconditional caring for the downtrodden. When Madan-Swain expressed difficulty reconciling the difference between her life and that of the desperately poor she worked with, Mother Teresa provided sound advice. She suggested that Avi avoid thinking in absolutes. Instead, she encouraged her to do what she could, to share as much of herself as she could, and know that it was sufficient. She stressed that if everyone hesitated because of their imperfections or limitations then nothing would be done to assist those in need.
“It stuck in my mind,” Madan-Swain, Ph.D. said. “What she said made me look at humanity and service in a different way, to figure out how to reach out and meet individuals where they are and walk with them on their journey”.
That attitude of caring, discovering what’s important in people’s lives and helping them maximize their potential has influenced her career and work in the UAB Department of Pediatrics, where she is a professor in the Division of Pediatric Hematology-Oncology. Her responsibilities included designing and implementing the Hope and Cope Psychosocial Program at Children’s of Alabama. This program provides support and services from diagnosis onwards using a family-centered approach, where the family and healthcare providers are partners working together to best meet the needs of the child diagnosed with cancer or other serious blood disorders.
Both individual and familial adjustment and coping in the face of adversity has been an interest and focus in Madan-Swain’s life. She noted that some families experienced difficulties post completion of treatment but others found meaning and benefit from having gone through a traumatic experience such as a child’s cancer diagnosis. Madan-Swain’s clinical observations have guided her research and her research has informed her clinical endeavors over the years.
Madan-Swain was honored earlier this year as the senior faculty recipient of the 2015 Dean’s Excellence Award for Service, an honor established to recognize exceptional contributions made by School of Medicine faculty. She was nominated by former Pediatric Hematology-Oncology Division Director Raymond G. Watts, M.D., who said the unique program “signifies Avi’s devotion to the patient population of children with cancer.”
“I was surprised and humbled,” she said. “To have the support and encouragement from my division director and both past (Dr. Stagno) and present (Dr. Cohen) department chairmen to continue doing the work that I care about deeply. I feel truly fortunate to work in a setting that not only provides outstanding medical care but is also sensitive and responsive to the psychosocial needs of the child and their family.”
Getting started
Madan-Swain came to the United States from India in 1977 after completing a bachelor’s degree at Jadavupur University in Kolkata to complete a master’s degree in education at the University of Wisconsin-Stout in 1979. After completing her doctorate in special education at Purdue University in 1984, she and her husband moved to Atlanta, where she started looking for teaching jobs with little luck. The lack of teaching jobs put her on the path towards her current career.She started working as a research assistant at Emory University with Dr. Ronald Brown, a psychologist who has done seminal work in the areas of attention deficit disorder. She used this as a springboard to explore the impact of attention on learning in other medical populations. Both Madan-Swain and Brown collaborated and received a grant from the Office of Education to explore the learning difficulties and psychological adjustment of children diagnosed with cancer through the course of their treatment. This experience highlighted Madan-Swain’s passion to better understand the neurocognitive difficulties experienced by children receiving central nervous system treatment and how the child and family adjusted over the course of the cancer trajectory. In order to continue with this line of research she realized the need for a doctorate degree in psychology, which she completed at Georgia State University in Atlanta in 1998.
Madan-Swain then proceeded to come to UAB for her internship and stayed on to complete a postdoctoral fellowship in pediatric psychology and neuropsychology in the Division of Pediatric Neurology. For a while Madan-Swain worked in the Sparks clinic and focused on neuropsychological testing with the Pediatric Rehabilitation team at Children’s of Alabama Hospital. However, as soon as the opportunity presented itself she joined the Comprehensive Cancer Center in 2002, and later the Division of Pediatric Hematology-Oncology.
Helping families cope
The Hope and Cope program, created in 2008, assembles an interdisciplinary team of skilled and compassionate specialists including social workers, child life specialists, pediatric psychologists and neuropsychologists, hospital-based teacher, school liaisons, chaplain, as well as art, music, and drama therapists, to provide emotional, psychological, and spiritual support, and also assist with concrete needs. The goal is to help families maximize their strength at all stages of their child’s treatment journey.The Hope and Cope team members also work with youth and their families seen through the Survivorship clinic. The focus in this clinic is to help survivors understand the potential late effect of their cancer diagnosis and treatment on learning and academic performance, how to advocate for their needs in the school and community setting, and help them cope adaptively with feelings of anxiety and depression. The Hope and Cope program also holds an annual memorial service “Remembering the Journey for families whose child has lost their battle against cancer.
To ease the stress and distress from frequent hospitalizations or lengthy outpatient visits, the Hope and Cope program offers emotional health and well-being activities including: Art, Music/Drumming and Rhythm Circle, Beads of Courage, Group School or Bedside Instruction, STAR (School/Social Transition and Reentry), Hand in Paw Animal-Assisted Therapy, Hands of Hope Volunteers, Individual therapy for patients and family members to help with specific challenges, Neuropsychological testing, Quarterly Dad’s Group, Weekly Inpatient Caregiver Dinner Support group, and Parent-2-Parent Mentoring
“It has been a privilege leading this program. Our focus has been on actively engaging families in their child’s care and making sure their voice is heard – after all no one knows their child better than they do! When families are actively involved in their child’s care, they feel empowered, and they comply better with medical treatment,” she said.
Madan-Swain is passionate about exploring complementary therapies (e.g., expressive therapies) and researching their impact on mood, adjustment, and quality of life. Currently her team is revamping the assessment process so that they can better identify high risk families and provide evidence-based interventions quickly. She’s also working to expand community partnerships that allow the program to grow and thrive. “I have been amazed at the financial support the Hope and Cope program has received from patients, families, and our community partners. People help in whatever way they can and for that I’m eternally grateful.”
She’s also is a big proponent of family-centered care and is leading the family-centered rounding initiative at Children’s of Alabama. “Family-Centered Rounding is a great way to help families feel more empowered and fosters better communications between the physicians, nurses, patients and their families,” she said. Family-centered rounding is already making an impact on the patient experience at Children’s of Alabama.