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Hospitals embrace family programming as medical benefits emerge

A party may be just what a critically ill kid and his siblings need.

When it comes to life-threatening illnesses in children, many families are learning there is more to treatment than pills. There are prepared meals and outings, opportunities to paint a picture and even a fresh set of clothes.

There once was little consideration given to patients' and their families' quality of life during extended hospital stays or therapies, especially when the medical situation was grave. But that thinking is changing among those giving and those receiving care.

Hospitals are increasingly arranging for extracurricular services and partnering with charitable groups to ensure everyone feels a little special. And while families say these kinds of opportunities serve as a kind of emotional salve, research is now beginning to show there may be medical benefits for the patient.

"When a child has a life-threatening illness, often the first reaction is to focus on the medical care," said Dr. Aziza Shad, who became head of the Herman & Walter Samuelson Children's Hospital at Sinai in Baltimore about a year ago. "But it's not just medical care that gets a child better. The support mechanisms that the foundations bring here are almost essential."

With that support, patients tend to be more compliant with treatment and less fearful, she said.

That was the case for 7-year-old Mia Cochran of Jarrettsville, who took a break from leukemia treatment to attend a recent cooking demonstration for children with cancer. During the class, held at Sinai by the nutrition program Happily Hungry, Mia enjoyed measuring berries for a smoothie and slicing red peppers to mix with potatoes.

Her mother, Jessica Cochran, said Mia loves to help out in the kitchen at home. She said she planned to bring Mia to more than one session during her long hospital stays as she's treated for a kind of leukemia affecting her blood and bone marrow.

"Good!" said Mia, flashing a smile after getting a taste of her efforts.

"Delicious!" added Isaiah Scott, a 14-year-old from Randallstown who was at Sinai for 43 days for acute pancreatitis. For much of that time, he was on a ventilator and sedated by pain medications. It was tough for his mother, Nicole Scott, who said Isaiah is normally chatty and upbeat. Seeing him smile and talk with other kids again was "a big thing."

Happily Hungry founder Danielle Cook got the idea for the program after her son Fabien recovered from a form of lymphoma and was struggling to get his digestive system back in working order. She asked medical providers for guidance on foods he would like, could tolerate and would be beneficial, but no one had much to offer.

A lifelong cook who now has a degree in holistic nutrition, she offers cooking classes at several hospitals that involve the kids in chopping, mixing and other preparation. Parents can ask questions and take home recipes. And everyone can, for a short time, focus on something other than illness.

Early studies by the National Institute of Nursing Research (part of the National Institutes of Health) show that critically ill patients in such nonmedical programs experience less pain and other symptoms. Sometimes they need fewer pain medications. They can experience increased mobility. Communication between health care providers and families also improves.

Dr. Patricia A. Grady, director of the institute, said the research shows every member of a family suffers when one member is gravely sick. Normal routines are upended, attention is concentrated on one member and finances are often strained. The threat of death hangs over everyone.

Many hospitals now manage programs or partner with foundations to offer services to patients, siblings and parents.

"Last Mother's Day, I was in the hospital and they brought me a Pandora bracelet," said Tara Coates-Harman, citing a gift given to her at Johns Hopkins Hospital by the Baltimore-based Casey Cares Foundation, which has aided the Catonsville mother since her daughter Meghan was diagnosed at age 9 last year with lymphoma. "It made me feel like they had our backs, all of us."

It was a small gesture, but that's the bread and butter of many such groups that focus on "palliative" or "psycho-social" support for families with a sick child.

Casey Cares was founded in 2000 and now works through hospitals with thousands of families in six states, providing ice skating and birthday parties, dinner and movie nights, vacations and special events like one recently at a fire station where kids could check out the engines, meet the firefighters and have lunch.

The nonprofit joins many others, such as the well-known Make-A-Wish Foundation, as well as hospital-based art or faith-based programs to help patients and their families cope with pain, depression, fear or just loss of normalcy.

But offerings are uneven, and are particularly lacking in smaller hospitals that are often in rural communities, Grady said. Sometimes medical providers are reluctant or just don't know how to talk about painting or ballgames when children are so sick. Families don't always know to ask, or don't realize they need support.

The National Institute of Nursing Research launched a campaign in 2014 called Palliative Care: Conversations Matter to encourage the medical community to discuss such care and encourage families to listen.

"The conversation can be tough," Grady said. "Everyone has different needs. And there isn't research that says exactly what works for everyone."

The institute is now investigating what might be help adolescents compared with young children, for example, and how services may differ when the disease is advanced or a child dies.

It's clear the support generally helps, said Shad, who brought groups to Sinai including Happily Hungry; the Hope for Henry Foundation, which hosts events for kids with serious illnesses; and Just Tryan It, which provides financial aid to families for mortgages, prescriptions and other items. Shad also plans to bring in an art therapy program called Tracey's Kids.

"It's a mistake to think we can provide outstanding medical care and not address the needs of the family," she said.

Philanthropist Casey Baynes, who founded Casey Cares in 2000, said hospitals are now receptive when the foundation seeks to to serve patients. She said many more foundations are now filling gaps, providing everything from big "glitzy" events to quick text messages reminding a mother that someone cares. One program provides new pajamas to families spending the night in the hospital.

The group's surveys show that 93 percent of parents in their program saw an increase in their child's emotional strength, decrease in anxiety level and reduction in sibling resentment, and 73 percent saw an increase in the child's willingness to comply with life-saving protocols. Almost 90 percent observed an increase in child's physical health and strength.

"People think their child isn't sick enough to get help, or they're too wealthy and others are in more dire need," Baynes said. "We don't want to wait until your child is in hospice. We could have been with you for years."

meredith.cohn@baltsun.com

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