When her son, Noam, was 15 months old, Miri Bar-Halpern, PsyD, and her husband, Derrick Hobin, were whisked into the overwhelming world of pediatric intensive care. Their son was born with two rare conditions that affected his airway – subglottic stenosis, a narrowing of the airway between the trachea (windpipe) and vocal cords, and tracheomalacia, a condition in which cartilage in the trachea is weak, soft or floppy. After a two-week stay in the Pediatric Intensive Care Unit (PICU) at MassGeneral for Children (MGfC) and several medical procedures, including a tracheostomy, Noam recovered well and went home. He has since grown into a typical 6-year-old boy with no airway concerns.
In July 2019, Bar-Halpern and Hobin welcomed their daughter, Aria. When she was 10 months old, Aria was diagnosed with the same two rare conditions as her brother. As Aria was admitted to the PICU, everything Bar-Halpern went through with Noam came back. Every cough, every breath and even seeing the doors to the PICU brought back difficult memories and feelings of fear and anxiety for Bar-Halpern. A month later, Aria went home and, like her brother, she now has no airway concerns.
On May 3, 2022, Bar-Halpern, a Boston-based child psychologist, shared her family’s experiences in the PICU at MGfC and the importance of trauma-informed care at this year’s Grand Rounds, sponsored by the Family Advisory Council (FAC) at MGfC. Every spring, the FAC sponsors a Grand Rounds session to highlight the importance of family-centered care and communication to the MGfC community. Bar-Halpern was accompanied by Kimberly Whalen, RN, MSN, CCRN, Sarah Taddei, MSW, LICSW, both from the PICU, and Roxan Del Valle, MDiv, of Spiritual Care at MGfC and Massachusetts General Hospital.
“When you treat patients, there is always a story behind it,” said Bar-Halpern, of Natick, Mass. “When Aria was admitted, it was triggering for me because of everything we went through with Noam.” From a family perspective, it is important that health care providers understand traumatic events that patients and families may have experienced. This is called trauma-informed care. Up to 8 out of every 10 children and their families report experiencing traumatic stress after a pediatric illness or hospitalization. Most people recover from a traumatic event, but for others, they can become stuck in the cycle of fear that can result from trauma. About 2 out of every 10 children and their siblings experience persistent traumatic stress reactions that affect daily life. Over time and with treatment, people can learn to stop the fear cycle and start to recover. Many can also experience post-traumatic growth in which they can give meaning to traumatic experiences and events. After her children’s experiences in the PICU, Bar-Halpern became an advocate for parents’ mental health when their children are admitted to the hospital. She also joined the FAC at MGfC and has created a series of audio meditations for families whose children are admitted to the PICU to help them feel more grounded and and calmer during times of stress.
“We have the privilege to meet patients and families during some of the most challenging moments of their lives,” said Taddei, a clinical social worker in the PICU. “They are the owners of their stories and we are there to provide empowerment, support and an emotionally safe space.”
An essential aspect of providing trauma-informed care is remaining open to hearing the experiences of patients and families. To do that, providers and staff need their own supports to address their feelings and experiences, such as burnout or compassion fatigue. With that support, providers can become more aware of their own emotional responses and can better tolerate feelings of fear, sadness or uncertainty. When providers and staff feel cared for and protected by the hospital, they can continue to provide high-quality patient care. There is also less staff turnover, a decrease in medical errors and better patient outcomes.
At the height of the COVID-19 pandemic, the PICU was transformed into an adult intensive care unit (ICU) to provide care for the surge of people admitted to Mass General with COVID-19. Almost two years after the start of the pandemic, PICU staff are still processing what they went through, saw and felt. During the COVID-19 surge, support provided by MGfC and Mass General at a system level was essential, and the hospital provided the necessities to ensure staff’s basic needs were met.
“At a time of such turmoil and change, these interventions provided a sense of control and stability in certain areas of staff’s daily lives. Now that we’re in this different phase, it’s important for leadership to ensure that we’re being proactive and to create a culture that provides multiple ways to reduce stress and burnout,” said Whalen, nursing director of the PICU. “To provide a support system that allows time to process grief, moral distress and maintain perspective to meet the needs of our patients and families, MGfC and Mass General continues to highlight the necessity of providing ongoing support to staff and to ensure we have the tools to continue to provide the extraordinary care we always have.”
Another crucial aspect of trauma-informed care is through spiritual care, in which providers help patients and families find a sense of connection to themselves, to others and to the world around them. For some, this may also include a sense of connection to a higher power.
“With spiritual care, one of the ways providers, patients and families can incorporate their spirituality is to consider reframing the situation to focus on healing rather than the outcome, allowing meaning to arise from the shared experience of the journey over a result in the future,” said Del Valle, a pediatric spiritual care provider at MGfC. “With spirituality, we seek to find and make meaning through the process of healing rather than relying on expected outcome to determine our ability to make sense or preserve hope in any given situation.”
The FAC at MGfC comprises family members, hospital leaders and patient-care staff who work together to promote family-centered care, focus on improved quality and patient satisfaction. If you know of a parent, patient over the age of 16 or family member interested in joining the FAC, please email FAC@partners.org.