By partnering with parents, Sala Institute, part of Hassenfeld Children’s Hospital at NYU Langone, demonstrates how child and family-centered care improves clinical outcomes.
When a child receives medical care at Hassenfeld Children’s Hospital, support programs make the experience easier for the whole family, thanks to the hospital’s Sala Institute. Photo Credit: Hassenfeld Children’s Hospital at NYU Langone
Children have important developmental needs, and those require a unique kind of support system that includes their family or caregivers. Children’s Hospitals across the country have long led the way in engaging patients and their families, recognizing that safe, high-quality care is family-centered at its very best. Hassenfeld Children’s Hospital at NYU Langone has created a culture of partnership, mutual respect and information sharing thanks to programs within the hospital’s Sala Institute for Child and Family Centered Care.
Elizabeth Haines, DO, director of Patient Safety and Quality from Sala Institute at Hassenfeld Children’s Hospital, works to ensure that care is safe, effective, timely, equitable and family-centered. We sat down with her to learn more about what family-centered care means and how it’s represented in every aspect of care and our culture. Read on for Dr. Haines’ insights and a family’s story following a five-month stay at Hassenfeld Children’s Hospital, showcasing how a child and family-centered approach improves patient outcomes.
Elizabeth Haines, DO, is the director of Patient Safety and Quality at Hassenfeld Children’s Hospital at NYU Langone. Photo Credit: Hassenfeld Children’s Hospital at NYU Langone
Modern Luxury: What does family-centered care mean to you?
Dr. Haines: “To me, it means prioritizing the goals, ideals, and values of children and their families in medical care. Sala Institute was founded on the belief that excellent care is rooted in partnerships among healthcare professionals, children and their families. Patient care involves ensuring that the right actions are taken at the right time for the right patient, based on their preferences. Family-centered care expands this approach to encompass the entire family, as equal partners in discussions and care planning for their child.”
ML: How do safety and quality initiatives specifically tailored to pediatric care differ from those in adult healthcare settings?
Dr. Haines: “The risks are different because communication, diagnosis and treatment for children are unique. Children may struggle to verbalize their symptoms. They also may not know which medication they should be receiving, leading to cognitive, verbal and intellectual limitations. To mitigate these risks, we take different approaches, with the most significant being the partnership with families. Improved communication, increased surveillance, and prioritizing family-aligned values foster a culture where families feel empowered to advocate for their children, which in turn improves safety.”
ML: How do you facilitate those partnerships with patients and their families?
Dr. Haines: “Families and caregivers are vital partners with the care team for every aspect of medical care. No one knows the child better than them. We encourage families to participate in clinical care rounds and be an integral part of the decision-making process each day. We call this Family-Centered Rounds, giving the opportunity to discuss the best plan of care, talk about any concerns, and teach doctors in training.”
ML: How do you integrate patient and family feedback into your processes?
Dr. Haines: “In our daily work, we’ve established protocols that promote partnership and inclusion of the family. We encourage them to contribute as additional voices, ears, and eyes to enhance the care of their child and the overall improvement of the hospital. We also created the Sala Family Advisory Council at Hassenfeld Children’s Hospital to engage parents in helping to improve the hospital experience, partnering with us on programs and resources to provide the perspective on what it’s like to be the parent of a child treated at our hospital. Our Sala Youth Advisory Council is made up of teenagers who help us understand a patient’s point of view. Our members are energized and motivated, providing a unique perspective and teaching us how we can make the experience easier for everyone.”
ML: Do you have an example of how your team effectively used parent feedback?
Dr. Haines: “Feedback from parents of premature babies in the Neonatal Intensive Care Unit (NICU) highlighted significant mental health burdens during this potentially prolonged period of time. In response, our team created a new role: a dedicated neonatal psychologist to address these psychological support needs within the NICU. We regularly partner with families, who helped us develop a comprehensive welcome package by sharing their wisdom and experience with others going through the NICU journey at the hospital.
Another example came from a member of our NICU family advisory program. After gaining insights into clinical practices and adverse outcomes, such as hospital-acquired infections, the parent expressed, “I didn’t realize how rare and impactful the infections my child faced were, and I wish someone had taken the time to discuss that with us when it was happening.” This highlighted the need for immediate and comprehensive disclosure discussions during such events.”
Lwam Rafel at Hassenfeld Children’s Hospital with her husband and daughter, Sloane. Photo Credit: Rafel Family
We spoke with Lwam Rafel, a parent and Sala Family Advisor, to learn about her personal experience with the children’s hospital’s family-centered care. After a complicated pregnancy and emergency delivery, Rafel’s daughter Sloane was born at just 25 weeks. Doctors immediately rushed Sloane to the NICU at Hassenfeld Children’s Hospital at NYU Langone, where she spent the first five months of her life. Since the NICU stay in 2019, Sloane and the Rafel family have had several follow-up visits at Hassenfeld Children’s Hospital.
ML: How did the family-centric approach at Hassenfeld Children’s Hospital impact your experience?
Lwam Rafel: “We’ve truly witnessed the positive outcomes of the partnership between the hospital and parents. For Sloane, it’s meant being discharged and recovering at home faster. It has also empowered her to advocate for her own needs and speak up for herself. Despite the medical complexities she faces, this partnership has been a vital part of our story and a source of care and support for our family.”
Sloane at a recent visit to Hassenfeld Children’s Hospital. Photo Credit: Rafel Family
ML: As a result of your family’s experiences, you’ve joined the Sala Advisory Council. What has that experience been like for you?
Lwam Rafel: “I’m grateful to help other families gain confidence and empowerment in their roles as parents and healthcare advocates. Through what we went through, I know I’ve become a better parent and learned how to best partner with the medical team to make sure we’re working together to get our kids the best possible care. When clinicians and families partner, the care improves. We can find solutions together.”
Learn more about the Hassenfeld Children’s Hospital at NYU Langone.
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