Whether it’s a word, a phrase or an essay, there is immense power in putting pen to paper to process the human experience. Through the Journals of Hope Program at MassGeneral Hospital for Children (MGHfC), there exists the opportunity for patients and families to express themselves with the stroke of a pen. The Journals of Hope Program, which launched in 2018 with great success on both pediatric inpatient floors, has now expanded into the Pediatric Intensive Care Unit (PICU) at MGHfC.
Twenty years ago, Faith Wilcox, a resident of Massachusetts, wrote in a journal to process her thoughts and emotions as she sat by her daughter Elizabeth’s bedside. Elizabeth, then 13, was receiving treatment at MGHfC for osteosarcoma, a rare form of bone cancer. Throughout her treatments and eventually, in the days and months that followed Elizabeth’s death, Faith found strength and solace in the act of writing.
As time passed, Faith sought to pay it forward to other families who were going through a similar experience. In 2018, she launched the Journals of Hope Program in collaboration with the MGHfC Family Advisory Council, the Social Work Department and the pediatric inpatient staff. Every week, Faith filled a rolling suitcase with colorful blank notebooks, journals and pens. Social workers from MGHfC helped introduce Faith to patients and families who may benefit from the writing process.
“It is well recognized that hospital stays are hard for families,” said Sandy Clancy, PhD, staff co-chair of the FAC. “Many families are moved to receive something so beautiful and to be invited to take time for themselves.”
When the COVID-19 pandemic started in Boston in March 2020, Faith temporarily suspended her hospital visits. The strict visitor policies limited hospital visitors. For those in the PICU, this meant patients and families could not have their usual visits from loved ones. It also meant families had to stay in their child’s room throughout their visit.
Searching for ways to further support patients and families who may feel isolated, Kimberly Whalen, RN, MS, CCRN, a nursing practice specialist in the PICU, and Faith collaborated with several services at MGHfC to bring Journals of Hope into the PICU. It launched in January 2021 with support from PICU nursing staff, the Social Work Department, Child Life Services and MGH Spiritual Care. MGHfC staff and providers share the journals with patients and families on Faith’s behalf while visitor policies are still in place.
“It is wonderful to be able to offer our patients and families another tool or outlet to get their thoughts out and process their experiences,” said Whalen.
Upon receiving a journal, families can decide how and when to write – or, in the case of younger children, sometimes draw. “Some prefer to write right away while others prefer to wait until their child is asleep, and others want to write at home,” said Wilcox. “When your child is in the hospital, there are days when it’s so overwhelming. It can be hard to digest, so journaling is a way to write everything down and go back to it. It’s also a way of getting close to and working through your emotions, which was helpful for me throughout and after my daughter’s treatment.”
The Journals of Hope Program is open to patients age 13 and older and their families who are staying on Ellison 17, Ellison 18 or in the PICU. If children younger than 13 are interested, they may also participate. Learn more about the Journals of Hope Program.