Sheri Stewart, the director for Hands of Hope Pediatric Comfort and Palliative Care, headquartered in Spartanburg, said that many people question her when she tells them what she does for a living.
“People tell me all the time that I must be very strong to work in pediatric hospice,” Stewart said. “I tell them that it isn’t me who is strong. It is the patients and the families we serve and that it has been an honor to walk this sacred journey with them.”
The mission of Hands of Hope is to improve the quality of life for children as they face difficult days ahead.
“We cannot change the outcome or the prognosis, but we can change the journey for the child and the families,” she said. “And hopefully leave them with a positive experience.”
Stewart has spent her entire 20-year career focused on pediatric care.
“I questioned how we could serve patients with a fatal prognosis better,” she said.
When Stewart moved to the upstate of South Carolina, she said she was fortunate enough to land a position with Hands of Hope. Even though its main office is in Spartanburg, Stewart said that they serve the entire state.
“We cover all 46 counties. We think it is important to have local people working with local patients,” she pointed out, adding that working this way also obviously makes response time quicker and helps Hands of Hope better meet immediate needs.
Stewart said that Hands of Hope is sensitive to what the families want from the organization.
“Some families like to hold on to many of the responsibilities of caring for the child, while other families welcome more assistance,” she said. “Our job is to help the parent focus on just being a parent.”
Stewart said that some children with fatal diseases have to see 12 to 15 specialists. Hands of Hope will bring those specialists together and help organize appointments for the convenience of the family. They also have social workers on hand who will do a full interdisciplinary assessment of patients and their living conditions. They will assist in obtaining resources such as a ramp, for example, to improve a child’s quality of life. They also provide sibling support with the aid of child life specialists.
“Many siblings of sick children need support,” she said. “Sometimes they don’t quite understand what is going on. We are there to help normalize their lives as well.”
Hands of Hope also offers pediatric palliative care. This service is provided for children who may not have a life-threatening disease but instead have a serious illness that requires constant care. It is focused on improving not only the long-term quality-of-life for the patient but also for the caregiver. Hands of Hope defines palliative care as care given to patients who are told they may not live to be 18 years old, while hospice care is designed to help patients who are told they have six months or less to live.
“Of course we always focus on hope, as it is not about adding years to your life, but rather, adding life to your years,” Stewart said.
Hands of Hope offers opportunities for the community to help.
“We have plenty of volunteer opportunities,” Stewart said. “For example, one of our volunteers is helping a patient who expressed interest in learning how to cook.”
People also can donate money to a foundation that helps with professional photography services and other opportunities.
“It is nice to provide families with lasting memories,” she said, adding that there also is a wish list on the Hands of Hope website that lists supplies that the majority of their patients could use.
“We try very hard to think of everything for the family so that they can focus on just being there for their child,” Stewart said. “It always feels good to hear from parents and other family members later who say that we made an awful experience bearable and how much they appreciated that.”