Peds Issue Extended
The UNC PM&R Way: Integrated and Holistic Care for Children
A child with special needs and his family walk into the outpatient clinic of Physical Medicine & Rehabilitation on the first floor of UNC Memorial Hospital early in the morning. The child, still a little groggy from the trip, hears his nickname from a staff member greeting him. The child lights up!
Soon afterward, a nurse appears with a blanket, crayons and coloring books for his siblings to pass the time during their brother’s appointment. Mom and dad, now without interruptions, can discuss concerns with Joshua Alexander, MD, the therapists and the patient’s surgeon who also has arrived to evaluate healing.
As the young patient leaves his siblings to their coloring, he passes a tempting array of “hip” stickers. The nurse asks him whether he feels comfortable getting his weight checked. Chances are, he’ll be fine with this request, as he already feels like a family member here and anticipates choosing the popular Wonder Pets sticker for his efforts.
After checking his weight, he and family go to a room where different professionals come in to asses his progress, make recommendations, administer tests or medications and address questions. Afterwards, the entire team meets together to give the overall perspective.
Dr. Alexander hands the patient that Wonder Pets sticker, but “accidentally” drops the sticker. “Ooops,” says the doctor. He watches range of movement as the patient eagerly picks up the sticker.
Later that morning, the patient may go for an x-ray or a new brace, saving another trip to UNC. The woman who first greeted him lets him confirm his address all by himself and gives the family directions to radiology and the brace shop.
This excellent level of care takes team members working together.
Coordination with a Personal Touch
“First we find out what the patient and family are coming for, and we coordinate with all the other professionals,” says Kristen Lewis, medical support supervisor. She’s the woman, above, who greets young patients, sometimes by preferred middle names or nicknames, upon arrival. “We bring all of the experts to one room without the family having to go all over,” Lewis adds.
Miklos “Mike” Harris, medical support assistant, recently joined the team. “The first few times I saw Dr. Alexander drop stickers when handing them to children, I thought he was just clumsy,” Harris laughs. “Then I observed how this is another chance for Dr. Alexander to check gait as the children walk up to the sticker display, then assess other ranges of mobility as they pick up the stickers.”
“Dr. Alexander has the patience of Job,” Harris continues. “The patients – and everyone he mentors – can’t help but feel it.”
Harris also has noticed, in the month he has been on the team, how far patients have come in a short amount of time. “I’ve seen patients move from wheelchairs to braces in the past month,” he notes. “All these kids have great dispositions, despite their disabilities. You look at what they have overcome and your own problems seem small in comparison.”
Nurses Help from the Clinic to the Home
“From the nursing standpoint, we try to make families as comfortable as possible from check-in to check-out,” says Dolores Parker, nursing assistant. She and Ursula Lavelle, RN, CRRN, work with families and caregivers who often travel long distances to bring their child to see Dr. Alexander, one of only a handful of pediatric physiatrists in North Carolina.
“These families often have enough stress as it is,” Parker notes. “We try to reduce the stress with a soothing atmosphere in the room, including soothing lights, blankets and pillows.”
One of the more stress-inducing parts of the visit is a possible injection of botulinum toxin to reduce spasticity. “Ursula or I stay with the child when Dr. Alexander is doing injections,” Parker says. “Often times, the parent or caregiver needs comfort and reassurance at this time.”
After the visit, Parker and Lavelle talk frequently by phone to parents and caregivers regarding medication questions, refills and home health paperwork. They also assist in getting supplies and many times help the family through a critical situation when they need advice.
“We do a lot of paperwork and phone work to keep things running as well as can be in the homes of the children,” Parker says.
Pediatric Therapists Bring Specific Expertise and Advocacy
Most days, you’ll find Cathy Howes, PT, and Holly Holland, OT, greeting children at their pediatric therapy clinic in the Children’s Hospital. When Dr. Alexander happens to be meeting with the same patients, however, they gladly walk over to the PM&R outpatient clinic to meet the family in a common room.
Howes has been working at UNC as a pediatric physical therapist for 20 years, and has seen many of the children grow to be adults. “It’s inspiring,” she says. “You become part of an extended family. It makes you a better clinician because it gives you a point of reference, a perspective for different and similar situations.”
Holland, a pediatric occupational therapist at UNC for 16 years, agrees. “I see our role as trying to provide as much expertise to the child and family – in a highly specific area – as possible. Because we keep up with the academic research, we provide a service that is research-based and resource-driven, a bigger picture. We bridge the gap by collaborating with other therapists who also are on the cutting edge.”
“Dr. Alexander provides a unique service,” Holland adds. “He is interested in how the families are coping and is a good listener. As a physiatrist, he cares about outcomes down the road.”
Howes and Holland explain how academic therapists can help change the culture of expectations, so that their patients grow up to be productive individuals in a more caring society.
“We shouldn’t just stop at age 21 because child services have run out,” Howes notes. “We give patients options and resources once they outgrow our services. We may be ten years from knowing whether the new research, such as using a family member’s spinal cord blood to increase mobility, can help patients. But we follow those outcomes.”
Holland remembers a patient she had seen since age three. Now an older teenager, this former patient now works as a job coach, finding niches in the workforce for other adults with special needs.
“The community still needs to be more open, seeing the advantages of finding appropriate jobs for people who are proud to work, who need a sense of belonging,” Holland adds.
Dr. Alexander Mentors Young Doctors about Trust
Did you know our faculty members educate young doctors in various aspects of the rehabilitation specialty? This includes one of the most important lessons: gaining patient trust.
We train up-and-coming physiatrists through our nationally-accredited PM&R residency program. The competitive, four-year program has grown to include 12 residents, including rotations in various UNC Health Care clinics, satellite clinics across the state and research projects.
Wesley Ibazebo, MD, rotated with Joshua Alexander, MD, as a resident in the hospital’s PM&R outpatient clinic, serving children with special needs. “It means a lot to children to be able to button their clothes and eat with a fork and a spoon without help from parents, for the rest of their lives,” Dr. Ibazebo says. “Our goal is to get children functioning so they can take care of their parents when they become adults.”
Dr. Ibazebo helps with tone management, coordinates care with other specialists and educates families about resources in their communities. “Sometimes I give a child an injection to help with range of motion,” he says. “Because we serve patients from all over North Carolina, from the mountains to the ocean, we often follow up by videoconference, to see how the injection helps. Through technology, we can talk during a visit to their local therapist, saving the family driving time and travel costs.”
Most of all, Dr. Ibazebo has learned from his mentor’s rapport with patients. “Dr. Alexander gives parents several options, and lets them make a decision,” he says. “Sometimes parents come in just for a second opinion, because they trust Dr. Alexander.”
Dr. Ibazebo offers insight into that trust: “We were meeting with parents of a newborn with spina bifida, a spinal cord condition which limits function,” he continues. “Before we met, Dr. Alexander asked me what I might say first to the parents. I thought about how I could immediately educate them about their infant’s condition, and Dr. Alexander reminded me to congratulate them first, on the birth of their child.”
“What I’ll endeavor to do as I go into practice is make sure I’m giving patients and families all the opportunities and autonomy to make their own educated decisions,” Dr. Ibazebo concludes. “Dr. Alexander has reminded me that, although a child may have spina bifida or another medical condition, that condition does not define who they are.”
Dr. Ibazebo was selected by faculty and peers to be chief resident for 2009-2010.
See also our pediatric rehabilitation services page, and browse other news about the program, including recent recognition and global outreach. For more about the benefits of coordinated therapies for children, we recommend “It Takes A Team” in Rehab Management.