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How do you care for a seriously ill child beyond the hospital?

Posted August 3

Imagine the agony and fear of learning that your child or teen has a very serious illness or even a terminal diagnosis.

The Triangle region features three children's hospitals -- Duke, UNC and WakeMed -- whose teams have treated a wide range of childhood illnesses and diseases at their facilities. But until recently, seriously ill children and their families had little specialized support available when they returned home.

"Prior to 2015, none of the health systems or hospices in the region had a specialized home-based hospice program for children and teens," said John Thoma, chief executive officer of Transitions LifeCare.

Only 36 percent of reporting hospices have a formal pediatric program, according to National Hospice and Palliative Care Organization's Facts and Figures, Pediatric Palliative & Hospice Care in America, 2015 Edition.

That's why Transitions LifeCare started a children's Supportive Care service called Transitions Kids to care for seriously ill children from birth to 18 years old, according to Lily Gillmor, BSN, RN, CHPN, CHPPN, Transitions Kids program manager.

"Typical hospice care requires that patients have a life expectancy of six months or less," Gillmor explained. "It's really challenging to accurately predict how a disease will progress with a child. Transitions Kids enables children and teens to receive care at home to manage their symptoms, keep them more comfortable and improve their quality of life -- in tandem with other treatments and regardless of life expectancy."

Supporting the entire family

When a child is seriously ill, the whole family has a variety of needs for support and education, according to Gillmor.

"Parents have great instincts about what's best for their child," she said. "Yet, they often need guidance and coaching to cope with emotions and reassurance of the excellent care they are giving at home. The Transitions Kids team of medical experts, nurses, and family and spiritual support specialists offers reassurance and support that's available 24/7."

Gillmor also said there's another valuable role professionals can provide -- facilitating conversations between children and their parents.

"Even a very sick kid is still a kid," Gillmor said. "They may have trouble expressing their feelings or saying something they believe isn't what their parents want to hear. They also want to play, have fun, tease their brothers and sisters. The team from Transitions Kids is experienced in helping children and parents communicate with each other. And by helping kids be more comfortable at home with their symptoms under control, they can go about their lives -- and be a kid."

Teaming up with the child's primary care physician or specialist

If a child receives care from Transitions Kids, it's not a replacement for their primary care physician or specialist. The Transitions Kids team works in partnership with the child's overall care team for added support.

"A child's pediatrician or disease specialist usually has a long-standing relationship with the child and their parents," Gillmor said. "Working together, we're able to provide a more comprehensive range of care. The Transitions Kids team can become involved earlier in the care process and become an extra layer of support for the child and parents at home, where hospital services don’t reach. We can be eyes and ears inside the home for the child's doctor."

Gillmor recommends that no matter who is providing the hands-on care at any particular moment, Transitions Kids supports parents in being advocates for their child by always feeling comfortable to ask these questions:

  • Why are we doing any particular treatment or process?
  • What are we hoping to achieve?
  • What are the child’s wishes and goals?

This story was written for our sponsor, Transitions LifeCare.

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