How supporting patient families plays an integral part in the healing process
At Bethany Children’s Health Center, every patient’s care team includes doctors, nurses, therapists and other professionals who work directly with the patient. But equally as essential to a child’s recovery is the role their family plays. For parents, knowing how to support and care for a child who has suffered a serious illness or injury can be intimidating and overwhelming at times. The Care Coordination team at the hospital is committed to supporting parents and caregivers on their journey in a variety of ways, from helping families navigate Medicaid and private insurance, to giving parents a voice to suggest changes and improvements at the hospital through the Family Advisory Council, and ensuring parents are trained and confident in caring for their child prior to going home.
Support for families starts at the first contact. Amy Jones found the hospital online while searching for a program for her daughter, Tellisa, who suffered an arteriovenous malformation (AVM) rupture in her brain and was hospitalized in Las Vegas, Nevada. She says the staff at Bethany Children’s Health Center started working immediately to help get Tellisa to Oklahoma and into the Brain Injury Response Program. Tellisa has been a patient at Bethany Children’s Health Center since April of this year.
“They didn’t even know my daughter, and they advocated more for her in the two months we were deciding whether or not to come to Oklahoma than all of the community support I had received at home,” said Amy.
Director of Social Services at Bethany Children’s Health Center, Andrea Vadnais, says the family needed extra help while Tellisa’s father established Oklahoma residency to qualify for Oklahoma Medicaid, and the team was there to help with paperwork and making sure the family’s insurance needs were met during this stressful time.
When parents need encouragement, their support team is always available, as well as the hospital’s Pastoral Care team and free counseling sessions at the nearby Bethany Counseling Center. The hospital also offers support groups for families that will be moving forward as COVID-19 restrictions ease up.
Amy says, “I feel 110 percent supported at the hospital. When people told me that Tellisa won’t be anything in life, staff at Bethany Children’s Health Center said they see miracles every day. They are always there to comfort me and tell me tomorrow will be a better day.”
Amy also explained that she now has a better understanding of Tellisa’s diagnosis and health plan because of staff at the hospital.
“They don’t expect us to have a PhD or understand what happened to Tellisa overnight. They take the time to explain things to us and are always there to listen. They treat Tellisa like she’s family,” said Amy.
Andrea explains that training is a big part of the support given to parents of patients at the hospital.
“We educate families to make sure they are competent, but we also want them to be confident,” she says. “We like to say that we are a training facility because we really do put a lot of time and effort into teaching parents to care for their child and empowering them.”
The hospital’s Social Services department encourages parents to get the training they need, often starting with nursing care. Parents also work with the patient’s Occupational, Physical, Speech and Respiratory therapists to complete training in all of these areas. As a patient nears their discharge date, parents participate in overnight training at the hospital. They have the experience of total care for their child with supervision from nursing staff, to see where they are competent and where they might need improvement.
“They do all the feedings, meds and respiratory care, if necessary, when taking care of their child overnight,” Andrea explains. “It’s an opportunity for us to see how well they’re doing and provide more training in any areas they’re struggling in. Our goal is to empower them by focusing on the things they did well, and how we can make other areas better.”
After discharge, families receive follow-up calls for several months starting 48 hours after leaving the hospital.
Amy Jones is grateful to have found Bethany Children’s Health Center after being told there was no hope for Tellisa’s recovery.
“Within a month of being here, she did things we were told she would never do again. Right now, she’s working on standing up, the trach will be out soon, and she’s saying words,” Amy says with emotion.
As Tellisa continues with medical treatment and therapies, Amy knows that as a family they will receive the support needed to succeed in their journey.
“Everyone here is so warm, so open,” she shares. “They make you feel like you’re at home. I love being here.”