Abstract and Introduction
From the start, the COVID-19 pandemic brought many changes to the day-to-day lives of health care providers, patients, and their surrounding communities. Hospital policies regarding visitors, work environments, and general operations became inextricably linked to heightened public health and safety guidelines. Hospital Incident and Command Centers, referred to as 'Command Centers,' took hold in health care organizations to monitor the progression of the pandemic and guide health care workers through the research and recommendations of leaders like the World Health Organization (WHO) and Centers for Disease Control and Prevention (CDC). Rapid, hierarchical decision-making was the primary operating structure for these leadership teams – limiting opportunities for patient and family input. Established Family-Centered Care programs needed to reframe their services.
The Department of Family-Centered Care (FCC) at Stanford Children's Health has integrated the voice of caregivers into clinical practice for over 20 years. The department utilizes caregiver experience through advisory councils dedicated to service lines and topic areas. FCC also runs a peer-mentor program. Trained caregivers, who have previously had a child treated by providers in the organization, provide emotional support and care coordination, and help build self-management skills of caregivers for existing patients. During the pandemic, FCC services adapted to support the organization's Command Center through several mechanisms – reviewing educational materials, messaging policy changes to caregivers and patients, and directly educating families on health and safety topics, such as hand hygiene, preventing infections, social distancing, and wearing masks. Between March 2020 and July 2020, FCC Peer-Mentors completed over 2,000 calls to caregivers at the bedside. From these calls, it was observed that certain day-to-day changes had an increased impact on the hospital experience – particularly around food. On a typical day, 18% of completed calls included concerns about getting food at home, in the hospital, or both. One FCC Peer-Mentor reported:
I spoke with a mom today. She is here by herself. Her husband usually brings her food, and she gets a voucher from her social worker for the cafeteria. On the days her husband cannot bring her food, she will often go without because she wants to save the vouchers.
Other FCC Peer-Mentors reported similar stories, with a higher frequency among calls placed to caregivers with limited English proficiency. In giving a voice to the experiences of families in the hospital, FCC highlighted an indirect effect of the pandemic – caregivers at their child's bedside were hungry.
Pediatr Nurs. 2021;47(3):145-148. © 2021 Jannetti Publications, Inc.