Family Patient Advisory Council Delivers First-Hand Experience
- 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