Newswise — TUSCALOOSA, Ala. — No one can truly understand the challenges faced by parents of a child with cancer, but one University of Alabama professor hopes to get a brief snapshot into that life through a current study.
“Parents who have a child with cancer have so much that goes on in their daily experiences,” said Dr. Sherwood Burns-Nader, a UA assistant professor in the College of Human Environmental Sciences’ department of human development and family studies. “One day their child may be feeling great, and the next day they’re experiencing side effects from chemo or their immune system is compromised because of treatment.
“They often have to drive to clinic or the hospital on a weekly basis, sometimes more, and there are out-of-pocket expenses,” Burns-Nader said. “They have a lot on their plate, and it fluctuates day to day. Some days they get good news, some days they get bad news. How do those day-to-day changes relate to their overall coping?”
Jessica Pope, a 32-year-old Sylacauga resident, understands too well the emotional roller coaster parents face on a daily basis when their child is diagnosed with cancer. Her daughter, 4-year-old Mikayla, was diagnosed with acute lymphoblastic leukemia Feb. 19, 2014.
“My initial thought was, ‘is my child going to die?'” Pope said. “I had heard about pediatric cancer, but I didn’t know a whole lot about it, and I didn’t know what to expect. My first reaction was fear and shock. I didn’t know what to do.”
Mikayla was considered high-risk, so she had a mixture of inpatient and outpatient chemotherapy. Since that first day of diagnosis, the young girl has been poked and stuck and pumped with drugs that will hopefully kill the cancer cells attacking her body. She has been hospitalized more than 10 times for infections, chemo treatments and other illnesses.
“It’s very scary at first. You don’t know what to expect day-to-day,” Pope said. “One day it will be great, and then the next day you feel like you’re back to square one. You’re scared you don’t clean everything in your home good enough and they’ll get sick. You’re scared of people coming to visit … just constant fear.
“You go from this happy child all the time and then, when they start steroids, one minute they’re happy and the next they are screaming and throwing things across the room. It’s hard to know how to deal with it all,” she added. “Doctors tell you what to expect, but they tell you the medical aspect, not the emotions you’re going to go through and that your child is going to go through.”
Previous studies have typically been retrospective — looking at a parent’s experience after their child was cured or they finished treatment, but Burns-Nader wanted something more immediate. Her Parent Reflection Study, which is currently recruiting participants, will look at a parent’s experience over a seven-day period and how that relates to their coping and satisfaction with medical care and medical staff.
Parents participating in the study will log on to an online website and complete a daily reflection for seven days. It is like a journal, but there are preset questions, and parents are asked to rank their responses on a scale from 1 to 5.
The questions range from financial and emotional stress the parents are facing to their child’s condition to how helpful and informative the medical staff has been.
“We ask that the parents complete the daily reflection every day at the same time so we can get a true depiction of a 24-hour time period,” Burns-Nader said.
For each day they participate, they will receive a $10 electronic gift card emailed to them; they can receive up to $70, if they participate all seven days.
The first day, parents are asked to complete a demographic questionnaire, but the only identifying information gathered is an email address.
The only criteria are that the child has been diagnosed within the last six months, the parents are 18 years or older and they have daily access to an email account and the Internet. The study is not limited to Alabama families; Burns-Nader said she is looking for families nationally.
“These parents are experiencing a lot of different emotions and have numerous challenges, but if we can gather some information on just those day-to-day changes — whether it be the child’s condition or the expense of traveling to receive care or paying for medication — then maybe we can better understand how we, as a medical team, can help them even more,” Burns-Nader said.
“Maybe they need more resources, or maybe there are other ways we can help minimize the impact or stress. If there are additional ways we can help, then we should definitely look into that.”
For Pope, she had always wished there was more of a support group from the first day of diagnosis. Now, more than two years into Mikayla’s fight and nearly finished (she finishes treatment in June), the family has gotten to know other families going through the same thing, but that took time.
“It’s hard to figure it all out in the beginning, but if we had met some families who understood and been through it, that would have been a huge help. It just seems like you’re all alone in the beginning,” she said. “I think a study like this would really help those families.”
For more information about the study, email [email protected].
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