Centering the Family Voice
With few exceptions, the hospital experience for families is a whirlwind. On any given visit, nurses, doctors, residents, fellows, child life, and support staff–often representing a variety of specialties–will shuffle in and out to perform tests and procedures, provide diagnoses, and help families navigate the downtime in between. These teams are working to achieve the best possible outcomes for kids, but sometimes an important voice gets left out: that of the families themselves.
The GCH Family Connection Program (FCP) has made significant progress in bridging this gap. Started in 2020, the FCP is the feeder program for several volunteer family engagement opportunities at GCH, and helps connect parents and caregivers with opportunities to offer input to improve care as well as promote the institution.
The genesis of the program came in 2019, when Jennifer Johnson joined the hospital from 13WHAM as director of family and community outreach. Johnson has extensive personal experience with GCH; her daughter Grace was born with a complex life-threatening condition, and passed away after 16 months of hard fought efforts from GCH care teams to treat her.
Johnson saw first-hand the dedication and skill of GCH care teams, but she also identified opportunities to make systemic improvements in how parents are involved in the treatment process.
“The hospital does so many things right during the whole journey of caring for your child, but there’s a lot of growing pains and points where you go, ‘wow, that’s way more difficult than it should have been,’” she said. “In my discussions with other parents and caregivers, I found that many had valuable thoughts on where things can improve.”.
The FCP builds upon and enhances existing initiatives, such as the pediatric advisory council led by Carla LeVant, director of social work, and has brought together a formal process for bringing parents on board to serve as valued members of advisory teams. This includes training on HIPAA protocol, diversity, equity, and inclusion, and 麻豆视频ICARE values.
Parents and caregivers that are recruited and complete this process are then guided by Johnson to offer their input in a variety of initiatives:
- Quality Improvement: GCH has several committees dedicated to improving care in each clinical are of the hospital. Twenty active family advisors currently serve on these committees.
- Buddy programs: Parents who join buddy programs provide a mentorship network for families with children in the NICU, or those who need G-tube and tracheostomy assistance, bereavement support, and more.
- Public Relations, marketing and advancement: Families can offer to share their stories to advance the institution, both locally and nationally.
Launching the FCP has been a gradual process: the program held its first in-person meeting in January of 2020, right before COVID arrived in the United States and upended all non-essential activities.
“We had lined up all of these these medical partners who were ready to engage families, and COVID caused everything to stutter-step. We had to pivot and ask: ‘can we do this virtually’?”
The answer was yes. While in-person meetings were shut-down, the Family Connection Program was able to grow during COVID, and even more families were able to participate than anticipated due to the ease and convenience of virtual meetings.
“When my daughter was receiving treatment, getting to the hospital to a meeting was very difficult,” said Johnson. “Families can now join these meetings when their kid is right next to them at home. It also
allows families to be engaged that may ordinarily not have the opportunity; we have a family that’s involved that lives up near Watertown, and Zoom allows them to be a part of it.”
A Parent’s Valuable Experience
Since moving past the pilot phase and creating online registration in the fall of 2022, more than 60 families have signed up for the program, and the impact is being felt across GCH.
“It’s opened up a whole new level of care and a positive role for parents,” said Nanci Bentley, a participant in the FCP.
Bentley’s son has been treated at GCH for more than 12 years for medically complex needs. She is familiar with the strengths of GCH as well as areas that could use improvement, and was a natural fit to provide input through the Family Connection Program.
“Jennifer had mentioned the family advisory council to me, and I’m big believer in the family voice being part of a child’s journey, with everybody working together and support children. I also love Golisano and wanted to pay back what we’d been given as a family through the years.”
Through the program, Nanci was recruited to the serve on several quality assurance committees, including the Behavioral Emergency Response Team (BERT), as well as the adverse drug event committee. Both leveraged Bentley’s expertise as a parent of a child with epilepsy, and the committees were receptive of her input.
“It was a lot of parallel learning between myself and the medical teams,” she said. “As families, we can help clinical teams understand the emotion and stress involved, and how empathy can play a big role in communications. A family sitting by the bedside has so many competing demands, so providing them with education and information at their level can empower them to take a role in their child’s care.”
Bentley’s input has made a tangible impact. In 2021, the Applied Behavior Analysis Care Team developed new sensory carts for patients living with autism or who have sensory needs.
The carts, which come with weighted blankets, headphones and other materials, are meant to help patients during potentially overwhelming or overstimulating experiences at the hospital.
“When they were creating the sensory carts, they asked what my experience was and my child’s motor needs, including what he looks at, to determine appropriate toys and items to utilize,” she said.
These sensory carts have helped provide a more welcoming and safe environment for children with special needs. Overall, Bentley has found the FCP experience rewarding and accommodating of her time. “It was only a couple of hours a month to participate, and I never added the time up because of the benefit and opportunity. I can’t thank Jennifer enough for facilitating it,” she said.
A Model Going Forward
Bentley’s experience is the template GCH can utilize to maximize outcomes going forward for everyone involved in the FCP, according to Johnson.
“As a care team, It’s humbling to accept that you’re not doing everything perfectly and there’s room for improvement. You have to be ready to receive that and be open to it, and we’ve seen this progress happen across divisions” she said.
This model is not only a template for GCH, but could pave the way for other hospitals as well. “We’ve seen other hospitals interested in forming this type of program, but fully implementing it has been relatively unprecedented,” said Johnson. “2023 was the year that we were able to push ‘go’. We will continue to place more families in different areas, whether it’s supporting a peer or being involved in a quality improvement project. We’ll also look to draw from demographically diverse backgrounds to provide the breadth of input we need to serve everyone.”
This growth will include the expansion of the various buddy programs, having more parents embedded within quality improvement projects, gaining more participation from ESL families, and identifying families who are willing to share their stories in order to bolster public relations and fundraising efforts.
For Jan Schriefer, MBA, MSN, DrPH, the Director of the Quality and Patient Safety Program at GCH, the Family Connection program has served as the perfect complement to the institution’s efforts to improve standards of care at every level, an initiative that went into effect during the latest strategic plan launched in 2020.
“In the past few years, GCH has made tremendous progress in quality improvement scholarship, and the Family Connection Program has been critical in identifying improvement areas that our clinical teams may overlook, from the time of day when we draw blood, to family centered central line care and family centered feeding tube care to making sure patients of different backgrounds are receiving equitable care,” she said. “We look forward to continue building this partnership with family advisors going forward.”
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