LINKEDINCOMMENTMORE

When a child has a life-threatening illness, the world seems to stop.

Families grapple with the balance of not giving up hope but striving to manage their child’s physical and emotional pain.

Hands of Hope steps in when others leave. The organization’s nurses and child life specialists help families face the unthinkable.

“Hands of Hope is a program that offers comfort care for children with life-threatening illness, as well as palliative care,” Sheri Stewart, the organization’s director, said. “What’s unique about our program is we are the only pediatric-specific trained team to offer services in the state.”

In years past, families had to choose whether to fight an illness or engage hospice care. Stewart said that is no longer the case.

“For any child who has a life-limiting illness, they have a lot of pain, a lot of symptom management needs,” Stewart said. “With the Affordable Care Act, patients can receive the hospice benefit as well as aggressive curative therapy. We can help to guide them in those decisions and clarify what the patient and family goals are.”

Currently, Hands of Hope serves 39 South Carolina children. Services are available to patients younger than age 21.

“We’re just an extra layer of support in the home,” Stewart said. “We’re there to help them focus on hope. We know it’s a scary time but we are on that journey with them.”

In addition to managing pain and other symptoms, caregivers provide psychosocial support, which involves caring for the emotional and spiritual needs of patients and families. Children engage in activities such as creative art projects to help them express what they are going through.

“All of us who are doing it — we can’t imagine not doing it,” Stewart said. “We can’t change the outcome, but we can change what that journey looks like.”

All of the work done by Hands of Hope is done in the home.

“That’s where we find families want to be,” Stewart said. “We want the child to be where they are familiar, with their loved ones and with their items that make them comfortable. We try to take the fear out of it and improve the quality of life for that child.”

Family members, including siblings, are included in the care. Siblings can make art pieces together, families can have photography sessions — whatever fits the particular family’s needs. The organization even offers a twice yearly bereavement camp for children who have lost a loved one.

“It impacts the family, including siblings,” Stewart said.

Even the concept of pediatric hospice is considered taboo by some, Stewart said.

“It’s difficult to talk about death and dying in adults,” she said. “Imagine that a thousandfold in pediatrics. It’s not the norm. I never tell parents that I know what they are going through. I can’t imagine. The more support the better. We are trying to impact the journey and make it better.”

Find out more

For more information about Hands of Hope, call 866-618-4673 or visit handsofhopesc.net.

LINKEDINCOMMENTMORE
Read or Share this story: http://www.upstateparent.com/story/news/health/2015/12/01/hands-hope-helps-greenville-spartanburg-families-face-life-threatening-illness/76623318/