• Article
  • July 13, 2014

Help Special Needs Patients Feel at Ease With the Hospital Experience

The hospital experience can be difficult for families. Here's how one program is helping families and patients with special needs feel at ease.

By Leslie Fischer

The program works directly with the hospital’s child life team, sending specialists to meet patients upon their arrival to the hospital. Providers in the program work to assuage hospital, procedural or visit-induced fear and anxiety for the child, while curtailing stress for the parent and streamlining process for the provider. The STAR program helps Winthrop make each experience a positive one for its participants. “What differentiates this program from a traditional child life program is that it specifically targets kids with special needs,” says Lori Martin, STAR program pediatric coordinator. “Knowing patient triggers beforehand is key. We can provide comforts, like the right color blanket or special music.”

Because this population can sometimes be difficult to calm—often what leads to an unsuccessful visit—taking proactive precautions is vital. “We hold patienttailored meetings with the families where we discuss patient strengths,” says Nicole Almeida, child life program director. “We’ve created fine-tuned care, personalized around patient triggers and effectiveness.” Capitalizing on research proving the effectiveness of a set plan and distinct order or operations, the team is successful when carrying out their mission and doctors are better able to treat children.

The STAR program is most effective when families take the reins. After filling out basic paperwork with patient preferences (see “All About the Patient,” right) families take the lead to ensure hospital staff are aware of all upcoming appointments, spontaneous emergency visits and their desire for specialized care. The completed form tells the team all about the patient, such as favorite colors, snacks or how to tell if he or she is upset. By employing a “help us help you” work model, the team can spend more time focused on helping patients.

Here’s how the program works. Before a visit to the hospital, the parent refers to the STAR card, (a credit card-sized resource with program contact information), calls the STAR hotline, and speaks directly with a child life specialist. After providing the patient’s name, appointment time and nature of the visit, the specialist pulls up the detailed patient profile and visit experience log. Using this information, the specialist creates a care delivery plan based on the patient’s needs.

The child’s comfort is at the core of every action plan. Whether the specialist navigates back routes throughout the hospital to hasten the care process and bypass waiting rooms, or simply meets the patient at the front door with a favorite color of balloon, the goal is to provide a sense of security during each interaction. “We are pediatric allies, not adversaries, to all children,” says Frederick Daum, M.D., chief of pediatric gastroenterology, hepatology and nutrition and the first physician to identify the need for specialized care at Winthrop. “We are trying to relate to this special patient population regarding their needs.”

To do so, the specialist remains with the child for the duration of the visit, employing demonstration, distraction and role playing techniques as necessary. Additionally, if the patient undergoes surgery, the specialist will stay with the child as he or she calmly falls asleep and is by the patient’s side when he or she wakes up. The specialist also coordinates logistical details so the child is in the same room during post-op. The specialist is at the patient’s side throughout the entirety of the visit, providing continuity in surroundings and smooth transitions between care.

These tactics are intentional efforts to mend holes in the care delivery process. “Prior to beginning this program, we operated on a ‘catch as catch can’ basis,” Daum says. “But we moved to an entirely different model where planning is central to everything we do.” And families are benefitting. Before enrolling children in the program, parents were just as fearful as their kids, saying they “cringed with dread and fear” at the idea of visits and tests. “But STAR is an amazing program that has completely changed that,” says a parent involved with the program. “My only hope is that more people learn about it and take advantage of it.”

Physicians are finding gains in efficiencies in service and improved patient-provider experience, and the enhanced care delivery is personally fulfilling. “The doctors have seen success, which has been gratifying,” Almeida says. “But helping the kids better cope has been truly rewarding.” Similarly, Daum says the creation of an enhanced sense of family with less emotional trauma is the most worthwhile outcome of the program. He loves having the opportunity to show families that physicians at the hospital really love these children, care about them personally, and recognize how difficult their lives are. “It’s a win-win,” he says.

Knowing so many groups would benefit—patients, families and staff members—it was important to Daum to educate as many colleagues and participants about the STAR program as possible. Upon implementation, Daum attended pediatric division chief meetings and explained the program’s importance. Using direct and written communication, social media, email, networking events and community visits, Daum spread the word, garnered participation and generated excitement about the new program. Thanks to increased publicity and intrinsic benefits of the program, membership among families and colleague buy-in is growing.

At its core, the STAR program is fairly simple. There is nothing revolutionary about asking a patient about his or her preferences. But these little details are sometimes overlooked, and they can be the tipping point between success and failure. Hospitals like Winthrop are taking the time to get it right.

Does your hospital have a new initiative up and running? Tell us about the program and lessons learned in its implementation. Email magazine@childrenshospitals.org.