Family Patient Advisory Council Delivers First-Hand Experience

Contact Information
To join the Family Patient Advisory Council, please call (608) 263-8527
Sam and Sue HendricksonMADISON - To look at the pictures of the little blond-haired girl lying on her hospital bed, smiling weakly through the tangle of wires attached to her body, it's clear that Sam Hendrickson has come a long way.
It all started when Sam was seven years old and just couldn't seem to shake the flu-like symptoms that had sickened her for months.
After a battery of tests, puzzled doctors discovered that a mysterious illness was causing Sam's liver to swell. Rapidly engulfed by cirrhosis, the vital organ began shutting down - robbing Sam's body of normal, healthy liver tissue that removes poisons from the blood, produces immune agents and controls infection.
In short, a person can't live without a functioning liver - and Sam was running out of time.
"Things were getting pretty perilous, so she went to the top of the list for a liver transplant. And then, we got to wait," remembers Sam's mother, Sue Hendrickson.
Three months later, they got the phone call that changed everything.
"Those three months felt like 30 years, huh?" Sue Hendrickson asked her now 13-year-old daughter as they reflected recently on Sam's journey.
Five years after her successful liver transplant at UW Children's Hospital, Sam Hendrickson is now a healthy, active student at Badger Ridge Middle School in Verona. Though the worst days are likely behind her, Sam certainly hasn't forgotten what it was like to be a gravely ill little girl who spent a big part of her childhood in and out of the hospital.
Hoping to help other young patients and families through sharing their own experiences, Sam and her mother Sue are both involved with patient and family advisory councils for UW Children's Hospital.
Pointing to families like the Hendricksons, children's hospital officials say the councils are a great way to draw upon the expertise of those who know what works - and doesn't work - when it comes to giving patients and families the best possible experience during their hospital stays and visits.
"It's a very hands-on way to put families and patients first," says Mary Kaminski, director of patient and family services for UW Children's Hospital. "As parents, grandparents and young patients themselves, these are people who have been through it all - what a wonderful resource to be able to tap into."
Helping Shape the New Children's Hospital
With the new American Family Children's Hospital slated to open in summer 2007, the advisory councils have particularly important work in front of them - helping to shape how the new hospital responds to the needs of patients and families.
Council members can have an impact on everything from the way staff communicates with young patients and their families to how pediatric patient rooms are set up.
In its advisory capacity, children's hospital Family Patient Advisory Council responsibilities include:
  • Promoting and enhancing the communication processes between staff and patients/families, and helping staff effectively communicate treatment protocols and available services
  • Formulating ways to provide resources to patients and families in all phases of treatment
  • Developing ways to make clinic visits and inpatient stays more comfortable for patients and family members through programs, groups and special activities
  • Supporting the mission of UW Children's Hospital
  • Promoting relationships in which family members and professionals work together to ensure the best services to children and families
  • Reviewing architects' plans and giving input about hospital design projects

For the Hendricksons, communication between hospital staff, children and their parents is a high priority. During Sam's hospitalizations, the vast majority of staff members did a good job of addressing both Sam and her parents with an appropriate mix of sensitivity and directness, the Hendricksons said.


"They were very honest with Sami. Even at 7 or 8 years old, they told her exactly what was going on and exactly what could happen," says Sue. "She was there for every conversation. Sometimes that was a little unnerving to us - her parents - but I think she actually settled on it easier than we thought."


For Sam's part, she wouldn't have had it any other way.


"I wanted to know what was going on," Sam says. "And actually, I really think it would have been scarier if they didn't tell me what was happening."


Improving Communication with Young Patients


Sam added that the hospital's Child Life staff members were particularly helpful with explaining things in terms young patients can understand.


"Sometimes somebody would be talking about certain drugs I was taking and I'd just look at them like, 'What?'" Sam recalls. "And then (Child Life staff) would say, 'the big red pill,' and I'd be like, 'Oh! Gotcha.' They translated well what was happening."


Overall, the Hendrickson family looks back positively on their experiences at UW Children's Hospital. But as members of advisory councils designed to solicit feedback from patients and families with first-hand expertise, Sue and Sam Hendrickson say there's always room for improvement.


One example of a communication issue the Hendricksons brought to the advisory council is how painkillers were explained to Sam and another young patient she befriended at the hospital.


"People would come in to my room and be like, 'Well, once you're off the painkillers, you can go home.' So, in my mind when I was that little, I didn't want to take anything for the pain because I just wanted to go home," explains Sam. "It hurt really bad, but I just never really wanted to show it, because everything feels better when you're at home."


Essentially, the children thought they were being told that they couldn't go home if they took painkillers. So when Sam and her friend told their story at a Family Patient Advisory Council meeting, Sue Hendrickson said hospital staff members immediately recognized the need to adapt the way such messages were being communicated.


"You could just see them going, 'Oh no - we've misspoken to these kids,'" Sue said. "It's just a classic problem with verbal communication between adults and children that can happen sometimes. What you as an adult think you're saying very clearly may not be so clear to a little child."


Offering First-Hand Experience


In addition to communication issues, other big priorities for the Hendricksons are amenities that can make a world of difference to hospitalized children and their families, such as food services and how patient rooms are structured.


Drawing from her own first-hand experience as a patient, Sam says she's made it a point to emphasize having on the menu healthy foods that are also appealing to children.


Sam's mother jokingly acknowledges that kids can't have Godiva chocolates for breakfast, lunch and dinner. "The hospital does need to encourage proper nutrition," she says. "But they can make it the menu a little more fun and colorful for kids."


Both Sam and Sue Hendrickson say they appreciate the opportunity to work with hospital officials to improve experiences for future patients and families.


"That's really the whole point - to share your ideas and say what to do to make it better," says Sam, who has been involved in the children's councils for four years - first as a member of Kids as Partners (KAP), the group for 8- to 12-year-olds, and now as a Teen Advisory Board member.


"It's just fun to be there and make new friends," Sam says.


Her mother agrees, adding that her experience on the council has personally rewarding. Stressing that input from parents is critical, she says she strongly encourages parents to get involved in the Family Patient Advisory Council.


"In my opinion, what they're doing is going to pay them back in solid gold," echoes Sue. "Over the last four years, I've seen so many great things happen. And these are things that you can't find any other way than asking people who have been through it themselves."


Joining the Advisory Councils


For more information about joining the children's hospital Family Patient Advisory Council, please call (608) 263-8527.

Date Published: 06/15/2007

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