Atlanta, GA,
09:30 AM

Shepherd Center Culture Inspires Connections Between Patients and Families

Former patients and families serve as unofficial ambassadors, providing a beacon of hope for newly injured patients and their families.

Most of us place a lot of credence on word-of-mouth recommendations, whether it’s what movie to see, the type of car to buy, where to go on vacation or the best preschool for our child. But when it comes to something as serious and life-altering as finding the best rehabilitation care following a spinal cord injury (SCI) or acquired brain injury (ABI), relying on the experience of others who’ve walked the same path becomes even more critical and can provide much-needed reassurance.

This seems to be the case for the community of patients seeking care at Shepherd Center. And while Shepherd Center’s clinical outcomes are among the best in the nation for SCI and ABI rehabilitation, it seems the total patient experience is what often gets people talking.

“What we found from research we did several years ago, and I believe it is still true, is that traditional word-of-mouth recommendations – the personal stories people share about Shepherd Center – are primarily what is driving people here,” says Susan Bowen, RN, CPHQ, Shepherd Center’s director of Quality, Outcomes and Patient Safety. “It’s the most powerful tool we have, and it happens naturally because of the sense of community we strive to build.”

SIDEBAR: Top 10 Things to Consider When Choosing a Rehabilitation Program
for Spinal Cord Injury or Acquired Brain Injury

Today, Bowen says the same principle remains, but the ease of communication via social media allows people to share their thoughts moment-by-moment and day-to-day.

“Many of our patients and families have such a positive experience at the hospital that they feel compelled to share their stories and insight with others in need,” she adds.

Through text messaging, Facebook, Twitter and other channels, these unofficial “ambassadors” often share real-time, genuine personal experiences that can cross geographic divides and offer hope to others.

Finding a Beacon of Hope

Using her Facebook page, Caroline King of Atlanta, Ga., decided to chronicle her daughter Julia’s personal journey following her SCI. Doing so not only helped to keep friends and family apprised of Julia’s rehabilitation and progress, but it also quickly became a testimonial for other families facing traumatic injuries – usually friends of friends of friends – who found Caroline to ask her advice. In fact, many people closely followed Julia’s story online.

“What makes my heart sing is being able to connect with other families who could benefit from the amazing care we received at Shepherd Center,” Caroline says. “My goal is to be there for parents because I have felt their unimaginable grief and fear. While I never want to diminish their fear, anger and grief, I also want to be a beacon of hope for them that it will get better.”

Caroline and Julia recently celebrated two years since the motorcycle accident that left the college freshman paralyzed from the waist down. Julia spent six weeks at Shepherd Center, during which time she learned to walk again. Her spirit and heart were set on returning to Charleston, where she was enrolled in college. Julia is now back in the city she loves and has switched fields to instead study at the Culinary Arts Institute with a focus on nutrition and how foods help heal the body.

The Wide Reach of Word of Mouth

In the commercial world, word of mouth has long been a goal of marketers who know the defining influence that good – and bad – recommendations can have on people’s decision making. In fact, 92 percent of consumers trust recommendations from friends and family above all other forms of advertising, including editorial content in newspapers, branded websites, opt-in emails and advertisements. Online consumer reviews and opinions appear to be the second most trusted source, according to Nielsen’s survey of 28,000 Internet respondents in more than 50 countries.

The same could be said for referrals to Shepherd Center.

“There has been a noticeable increase in the number of inquiries I receive directly from families (rather than just from medical professionals referring patients),” says Angella Clemons, RN, provider relations coordinator at Shepherd Center. “I think it’s due, in part, to consumers being more savvy by conducting research online to find options for rehabilitation or other families who have faced a similar catastrophic injury. Our patients are often very willing to be a resource.”

A Reassuring Voice

At the end of the day, word of mouth is about having a meaningful connection with others – something Shepherd Center prides itself on.

“We can give families outcomes data, but hearing from someone who has been through it is important. These stories come from the hearts of people who have been there and who are still there because these are not injuries from which you always fully recover,” Clemons says. “You learn to live your life differently, but you need constant support and reassurance that you are making the right decisions. What better way than by hearing from others who’ve been there before?”

Lori Haase of Stafford, Va., couldn’t agree more.

“No one knows about this world until you are in it,” Lori says.

Lori’s son, Charles or “CJ,” 17, was driving along the bumpy, narrow country road that led to their home early one morning when the passenger-side tire dropped off the edge of the path. The car pulled to the side, and in an attempt to right the car, CJ hit a tree head on.

“He was in really bad shape,” she recalls.

CJ spent a month in the trauma intensive care unit (ICU) at Inova Fairfax Hospital in Virginia. His face was shattered, he had a brain injury and doctors put him in a medically induced coma. He nearly died several times. Lori says the ICU nurses were instrumental in getting them to the next stage of CJ’s recovery. The nurses recounted stories of similar patients who had gone to Shepherd Center and had great success. Next, they helped put Lori in touch with several parents of current and former Shepherd Center patients. Fortunately for CJ, logistics with lodging and transportation and approval by his insurance company all aligned to allow him to do his rehabilitation at Shepherd Center.

“It was very scary, and being from Virginia, we were overwhelmed to think we would have to go all the way to Atlanta for rehabilitation,” Lori says. “But we are so blessed to have come to Shepherd Center and so thankful to the parents who shared their stories with us. It validated that this was the best next step for us.”

With no use of the left side of his body, CJ was first admitted to Shepherd Center as a patient in the Disorders of Consciousness Program for brain injury patients who are minimally conscious. As he progressed, he moved into Shepherd’s full brain injury rehabilitation program. The two months CJ spent at Shepherd made a world of difference, Lori says.

“The progress he made is amazing,” she adds. “He is walking, talking and eating – all unassisted.”

After her family’s experience at Shepherd, Lori is convinced that where a patient goes for rehabilitation can make a big impact on their recovery and future outlook, she says.

“Knowing what we went through with CJ, I was contacted by someone whose daughter and boyfriend were in a car when three trees fell on top of them,” Lori recalls. “The boy was sent to a local rehab program because the parents wanted to stay closer to home, and he still cannot talk or get out of bed on his own.”

The program, she explains, doesn’t specialize in brain injury rehabilitation.

“That program seems more focused on keeping him safe than pushing him so he can regain what he lost,” Lori adds. “I know CJ is leaving Shepherd Center the best he’s going to be, and the support we have been given by staff and other families is amazing.”

Compelled to Spread the Word

So what’s behind word-of-mouth recommendations and the willingness of patients and families who received care at Shepherd Center to relay their experiences? Among other things, patients and staff say it’s a mix of:

  • Patient outcomes and satisfaction: Patients treated at Shepherd Center are much more likely to return home and be able to go back to work or school compared to the national average.
  • Available peer support: No one can possibly fathom what someone goes through after an SCI or ABI quite like other patients and families. It is these peers who help reassure and now educate them about how to manage their condition after discharge, providing real-world insight on what to expect.
  • A unique culture of care: “You don’t find it in every healthcare setting,” Clemons says. “It means a lot to our patients and families, and they, in turn, want to share their experience.” Caroline and others say you feel the difference as soon as you walk through the door. Across the continuum of care, the Shepherd Center culture supports what’s being delivered at the bedside, and it’s not just patients’ interactions with therapists, nurses and doctors, but also the support staff who do everything from serving food to cleaning patient rooms.
  • Continuing support: Through education, social media and community outreach, Shepherd Center builds relationships with its patients and families that endure long after they have completed rehabilitation.

“I always refer to Carl Bouchard’s quote, ‘They may forget what you did, but they will never forget how you made them feel,’ because this is what makes the difference,” Bowen says. “It’s the personal connection and the feeling throughout the facility that makes what they’re going through tolerable for patients and their family.”

In many ways, Shepherd Center becomes a home away from home, and the staff work to set up patients for success.

“One of the many things Shepherd Center is really good at is encouraging patients to talk with one another, to share stories and support one another,” says Caroline, who knew about Shepherd Center because her dad, a respected fertility doctor in the area, has helped many patients at Shepherd Center be able to have children. “But I never appreciated it the way I do now.”

SIDEBAR: Top 10 Things to Consider When Choosing a Rehabilitation Program for Spinal Cord Injury or Acquired Brain Injury

We’ve all relied on them – pro and con lists to help weigh our options and make smart decisions. Choosing a rehabilitation facility – one that is regarded as a Center of Excellence – is one of the most important decisions you will make when you or a loved one is injured. That’s because where you are treated can make a big difference in how much function you will regain, whether you will be able to return home and how you adjust to your new normal.

Below is a list of things you should consider:

  1. Is spinal cord injury (SCI) or acquired brain injury (ABI) rehabilitation the facility’s main focus? How many new, traumatic spinal cord and acute brain injuries does the facility treat in a year? Keep in mind many of the “top” rehabilitation hospitals predominantly cater to orthopedic or post-surgical conditions, so make sure the program specializes in these types of injuries. Shepherd Center treats more than 400 patients with SCI annually, whereas a general, non-specialized rehabilitation program may only see a dozen cases a year.
  2. Clinical outcomes. The data say it all. For example, you’ll want to know: What percentage of patients in the program is able to return home and/or go back to work? How well do patients progress functionally (i.e., What is the change in average functional independence measure [FIM] between admission and discharge)? What is the rate of preventable infections, which can cause illness and delay rehabilitation? All told, patients receiving care at Shepherd Center are much more likely to return to their communities after rehabilitation compared to the national average (84.1 versus 68.1 percent, respectively). See
  3. What are people saying? Seek out former patients and family members who can speak to the culture and quality of care they received at the facility. Check out the facility’s social media pages. Also, ask about patient satisfaction survey results.
  4. Average age of patients. SCI and ABI often happen to people in the prime of their lives. For example, the average age of those with SCI is 39.5 years old. These patients benefit from intensive rehabilitation to maximize their recovery so they can return to work, school or family life. Knowing there are other patients in your age range helps enhance camaraderie.
  5. Capacity to treat across the continuum of care. Find out if the facility offers intensive care, inpatient rehabilitation, post-acute rehabilitation, and outpatient and transitional care. Because Shepherd Center is equipped to handle all levels of care – even ICU patients who are still acutely ill – patients often start intensive rehabilitation sooner.
  6. Program intensity. Patients at Shepherd Center take part in rehabilitation therapy for four to six hours a day; other programs may not offer as much therapy each day.
  7. Length of stay. Ask about the average length of stay for patients with injuries similar to yours. Keep in mind, for traumatic injuries, less is not necessarily more.
  8. What’s in the pipeline? Do they have the resources to do research and integrate best practices? Because SCI and ABI are lifelong conditions, it’s a good sign if new therapies are being investigated to help patients live better now and in the future. Performing research and participating in clinical trials helps keep Shepherd Center at the forefront of improved and new treatments.
  9. Array of services. Ask whether there are programs such as recreational therapy, music therapy, or family and vocational counseling that supplement physical and other types of therapy. Rehabilitation should be a holistic experience, caring for the whole patient and his or her family.
  10. A personal connection. Does the hospital maintain contact with patients after they are discharged to track progress and help sustain their recovery? Discharge from the hospital shouldn’t mean the end of your relationship. Ask about follow-up, peer support, online resources, and various class and recreation offerings that keep you and your family connected even after your stay is complete.

Shepherd Center access case managers and other staff members are available to answer questions patients and families have when researching and selecting a rehabilitation facility. Contact the hospital’s Admissions Department for more information at 800-743-7437 or by email.

By Amanda Crowe, MA, MPH

About Shepherd Center

Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.