Parents and caregivers are a key part of clinical rounding with physicians and staff.
Akron Children’s Hospital doesn’t just promise to treat each child as if its own, it’s the foundation as to how our hospital leaders, providers and staff interact and care for each and every patient.
Akron Children’s incorporates family centered care, bringing together patients, families and providers to form a working partnership in the planning, delivery and evaluation of care. Families are not just patient visitors, but they are essential caregivers and participants in the care and decisions that affect their child’s care.
“Families are an integral part of a child’s well-being and the one constant in a child’s care,” said Kristin Hafford, Akron Children’s parent advisor coordinator. “Families offer their children encouragement and support, comfort and strength during care. We need families to help us improve the way we provide care to patients.”
Patient and Family Centered Care
At Akron Children’s, we follow the family centered care 4 core concepts to keep children and families the focus:
- Dignity and Respect: We listen to family perspectives and choices, and incorporate family knowledge, values, beliefs and cultural backgrounds into the planning and delivery of care.
- Information Sharing: We share timely, complete and unbiased information with families so they can effectively participate in care and decision making.
- Participation: Families are encouraged and supported to participate in care and decision making at the level they feel most comfortable with.
- Collaboration: Families are included on an institutional-wide basis. Our hospital leaders collaborate with families in policy and program development and implementation, facility design, professional education and more.
When we say families are our allies, we mean it. Akron Children’s was one of the first hospitals in the country to offer a parent advisory council for parents to offer input on issues that impact patient care.
Today, parents serve on hospital committees, and participate in hospital focus groups and performance-improvement projects. Parents offer support on our program development and policy upgrades. We also invite parents into our simulation training for feedback.
“We invite families into areas of work that other hospitals may not be prepared to do,” said Hafford. “We look at families as our partners, and we’re doing it with each and every family, no matter what they look like, their situation or income level. We understand parent feedback is valuable and necessary to make our services better.”
But family centered care is more than just making families happy. Perhaps more importantly, it’s also about delivering best results for kids.
Family centered care leads to higher quality care through improved, safer outcomes with reduced medical errors, enhanced patient experiences with increased trust with medical staff, and improved productivity with a wiser allocation of resources.
“By utilizing core principles of family centered care, experiences and relationships with providers will be improved, which leads to better health outcomes,” said Hafford. “If families are comfortable and feel respected by providers, they’ll be more forthcoming with their child’s care. If trust is lacking, however, the family may withhold information that could impact care.”
But don’t just take our word for it. As we recognize this week, Nov. 4-8, as Family Centered Care Week at Akron Children’s, let our patient families and their experiences speak for themselves.
Collaboration is key for Nhalani West
Nhalani West’s kidney problems began at age 3, but it wasn’t until she turned 8 this year that she was diagnosed with Alport syndrome, a genetic condition characterized by a rare kidney disease.
During that time, she experienced many symptoms and other complications, such as a hearing loss and vision problems, and saw several providers to treat them — 8 to be exact, including those in nephrology, dermatology, ENT, ophthalmology and genetics.
“I was concerned because she was seeing so many doctors that it started to get confusing and overwhelming. It was information overload,” said her mom, December West. “At one point, one doctor was saying one thing, another was saying another thing and I didn’t know which doctor was right!”
Family centered care made a world of difference for the West family after Nhalani, 8, was diagnosed with Alport syndrome.
It wasn’t until she contacted Akron Children’s Haslinger Family Pediatric Palliative Care Center that family centered care shined through and made a world of difference for the West family. Palliative care served as a consultant and liaison between all the doctors and provided recommendations to help the West family make important decisions about Nhalani’s care.
Dr. Sarah Friebert, Akron Children’s director of pediatric palliative care, and her team reviewed all Nhalani’s medical history and doctor reports. She even reached out to several providers in nephrology and ENT to gather additional information.
The palliative care team then sat down with the West family to explain Alport syndrome in-depth and talked them through recommended treatments. They also explained how some treatments may cause additional complications and helped the family weigh those difficult decisions.
“Palliative care has made things much more cohesive for us; they’ve brought everyone together on the same page,” said December. “It has given us peace and lessened our anxiety. We’re taking precautions to prolong a kidney transplant as long as we can, but if and when she needs it, we’ll be ready for it, thanks to Akron Children’s.”
Family participation made all the difference for Jamie Goldman
When Jamie Goldman was first diagnosed with Type 1 diabetes at age 8, she was devastated. She just wanted to be a normal kid and lead a normal life. But the family centered care Jamie and her family received changed all that, erasing much of that fear and worry.
Family-centered care helped Jamie Goldman (2nd from left) feel like a normal kid again after being diagnosed with Type 1 diabetes.
“While Jamie sat in a shocked state, the nurse pushed full steam ahead to assure Jamie that she would still lead a normal life,” said her mom, Laura Goldman. “Nothing was kept private. It was obvious we were a team and we all were in this together!”
In the beginning, Jamie struggled with the diagnosis. In an attempt to avoid extra shots, she didn’t eat a whole lot and, therefore, continued to lose weight.
A standard policy, Jamie had to wait 6 months before she could receive an insulin pump, which would eliminate shots. At her 3-month checkup, however, she asked her provider in the Center for Diabetes and Endocrinology if she could get it earlier.
The provider listened to her reasons why, reviewed her records and asked for her parents’ input. In the end, she understood Jamie had a special case and made it possible to move up the timeline. Jamie had an insulin pump by her next checkup.
Jamie Goldman was moved to give back after receiving incredible care and set up a “Need a Friend” campaign to donate stuffed animals to other Akron Children’s patients.
Similarly, when the Goldman family struggled to get a remote glucose monitor to make it possible for Jamie to spend the night away from home, the care team once again went to work on the family’s behalf. In the end, the family was the first in the country to receive insurance coverage for the unit.
It’s that extra effort and collaborative care that enabled Jamie to feel like a normal kid again.
“The care team has been there for Jamie and our family without fail!” said Laura. “It is obvious they have always wanted what works best for Jamie and our family.”
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