The Family Advisory Council at MassGeneral Hospital for Children (MGHfC) has established a visible presence within MGHfC and the larger hospital community, and continues to positively influence patient care by providing a parent’s perspective on how to deliver meaningful patient- and family-centered care, with a special emphasis on family-centered communication. 

The following represents a sampling of the results of the Council’s collaboration with hospital leaders and staff:

The MassGeneral Hospital for Children (MGHfC) Parent and Family Advisory Council (PFAC) is integral to the Pediatrics Department, providing input and guidance around clinical practice, program planning and education, and the family experience. This council is the longest standing active advisory group of parents and families at MGH. It has a particular focus in helping the MGHfC care teams’ practice with a family centered perspective.

Mission

The Parent and Family Advisory Council is dedicated to fostering the partnership of parents, children, and professionals working together to ensure a climate of responsiveness to the needs of children and their families in all areas of care within MGHfC.

Goals and Progress Made

Transitions—Work with the team on the pediatric wards, Ellison 17 and 18, dedicated to improving inpatient transitions to adult care which is led by Nursing Director Lori Pugsley.

Progress: Two parent members of PFAC continue to be members of the committee that has been formed, offering their insights on the committee.

Patient Experience—Members of the PFAC sit on the Inpatient Patient Experience Committee and on the Ambulatory Patient Experience Committee.

Progress: In collaboration with the parent member a Healthstream video was finalized and published this past year. This training session which has been assigned to all ambulatory staff at MGHfC focuses on helpfulness and courteousness and handling difficult situations.

Neonatal Intensive Care Unit: A new member of the committee who had been a parent in the Neonatal Intensive Care Unit (NICU) met with Nursing Director of the NICU to help focus efforts  on the parent and patient experience in the NICU. She is putting together a presentation recapping the parent experience in the NICU from her personal parent perspective and as a healthcare architect/designer perspective. This parent is now a member of the Building Healthy Brains Committee of the NICU. As well, two parents met with Child Life representative, Ashley Reardon in a feedback session regarding introducing child life services into the NICU.

Pediatric Pain—Engage with the Pediatric Pain team, learn how they function and provide parent feedback based on the patient experience.

Progress: A letter written by the PFAC members in reaction to the presentation on the Pediatric Pain Team was sent to the Exec leadership of the Department of Pediatrics. There is work in progress in the Department incorporating this response.

MGHfC Marketing and Awareness—Continue to collaborate with MGHfC leadership, marketing, web design and editor around using patient stories to enhance awareness of MGHfC and differentiate it from other hospitals in the city.

Progress: A proposal was made to promote MGHfC along the Boston Marathon route to increase awareness of MGH’s pediatric capabilities. A plan was put together that parents and staff would volunteer to hold signs along the Boston Marathon route. The signs would express inspirational messages, consistent with MGH/MGHfC Brand. Discussion of a tent and fliers had just begun among the PFAC members. A banner could be placed at mile 20, a private home, that would promote MGHfC. Purveyors of materials had been identified and all costs were covered. Discussion and coordination with internal departments and development were underway when the project was canceled due to COVID-19 and the race also being canceled. Much was put into place which can be picked up in a subsequent year. A committee to create mechanisms by which parents can offer stories to MGHfC for possible use in social media and marketing efforts continues to meet.

Topics Reviewed by and Presented to the MGHfC PFAC

During monthly meetings and through targeted requests, the MGHfC PFAC reviewed, provided feedback on, and learned about a variety of topics spanning settings and strategic imperatives. With the onset of the Pandemic and discontinuation of in person meetings, the meetings in March and April were not held. We restarted in May using the ZOOM platform and had a record number of attendees. We have continued our monthly meetings via ZOOM with good attendance.

The presentations have included:

What Matters to You: Dr. Lindsay Carter, Medical Director of the Inpatient General Care Units,  presented to the group on the IHI initiative. A member of the PFAC volunteered as a member of this new group reviewing activities for this initiative.

Acute Psychiatric Services: Dr. Abby Donovan, Associate Director of Acute Psych Services in the ED presented to the PFAC on the opportunities in the APS to make it more family centered as a physical reorganization progresses to make the unit contiguous rather than separated. They will be looking for parents to join them in a reorganization committee which they plan on establishing.

Boston Strong: The Boston STRONG project is one in which researchers at MGH are looking at teeth of children to see evidence of trauma in their lives. Specifically, they are interested to procure teeth from children who had lived through the Boston Marathon to see if there was evidence of that trauma present in their teeth. They sent our parents a good deal of written material that explained their project and asked our members to read for clarity. PFAC members gave their perspective on the best way to present the information and research so that parents in general would understand and then sign up for the program.

MGHfC Editor: Briana Beckvold, MGHfC Editor for patient educational materials presented to the group to verify that the system for review of patient education materials works for parents. Patient and Family Story Project: To grow MGHfC awareness and highlight the patient experience, the FAC worked with the MGHfC digital, marketing, public affairs, and patient education teams to create a patient stories page within massgeneral.org/children. This is meant to be a way to highlight patient stories at MGHfC, which can also be shared elsewhere (such as social), as well as provide a way for patients and families to signal interest in sharing their stories, rather than just relying on clinicians or other MGHfC team members to identify patients to reach out to. The page was originally created on the previous version of massgeneral.org, but was rebuilt along with the relaunch of the redesigned site late last year. After feedback from the PFAC, the page now includes standardized patient story titles to make them easier to identify on the website. Prior to the pandemic, this page as well as a few patient stories from this page, were featured as part of Facebook social ads for MGHfC (though all campaigns were paused due to COVID-19 and subsequent budget restrictions). Next steps include standardizing the story submission process (offering additional details for patients and families who click the “share your story” button), adding social links to the patient stories page and the individual story pages to encourage visitors to stay connected with MGHfC, and continuing to add new patient stories to this page as well as share them out from the MGHfC Facebook account.

COVID-19 Updates: Brian Cummings, Vice Chair and Medical Director of MGHfC has provided monthly updates once the PFAC restarted to meet in May. Updates have included pathophysiology and biology of COVID-19 as well as information regarding changing requirements and policies at MGHfC. The committee was asked for their perspective on some of these and how best to present information on these as well as other related topic to patients and their families.

Parents and Patients as Educators

Intern Orientation: Parents continue to be an integral part of intern orientation. In an annual “Meet and Greet”, this time done by ZOOM, the parent co-chair of MGHfC PFAC presented on issues important to PFAC members.

Patient Education Material: PFAC parents continue to work with the MGHfC Editor by reviewing patient education material and providing the parent perspective.

FAC Grand Rounds: In anticipation of the annual MGHfC FAC Grand Rounds in April, the PFAC had worked with Suzanne Koven to develop a discussion around “Writing as Healing” as a theme. Plans were put together for a panel including Dr. Koven, a resident, and a parent to describe their experiences with journaling. Unfortunately, it was canceled due to COVID.

Additional Activities

Journals of Hope Program: Faith Wilcox, parent member of the FAC, offers a program in which she visits the pediatric wards for two hours each week and provides journals and writing prompts to parents, family members, and patients. The goal is to help individuals to reduce stress, celebrate victories, and honor their grief. Since the inception of Journals of Hope in January 2019 until the program had to be paused because of the pandemic in mid-March 2020, Faith has spoken with 713 individuals of which 607 have selected journals and expressed interest in writing, an eighty-five percent rate of success. To fund Journals of Hope, Faith has raised $3,400.00. Matt McGuiness and his employer, Harvard Pilgrim, generously contributed to this program as well. Faith looks forward to continuing the Journals of Hope program in the future.

MGHfC Facebook: The annual FAC Grand Rounds was featured in a story and photograph on MGHfC Facebook.

Website: FAC continued to work with MGHfC Senior Manager of Digital Strategy and Web Development to ensure that FAC’s webpage is up-to-date and reflective of the group’s activities. Social Media: MGHfC Editor continued the practice of profiling a FAC parent in Totline, MGHfC’s online publication.

MGHfC PFAC Member Participation in Committees and Initiatives

PFAC members continue to participate in ongoing committees, task forces, and initiatives at MGHfC, providing the patient/family perspective within interdisciplinary groups.

  • Family Wellness Committee
  • Ellison 17 and 18
  • Transitions Committee
  • Inpatient Experience Committee
  • Outpatient Experience Committee
  • Ethics Committee
  • MGHfC Advisory Board
  • MGH Gun Violence Prevention Committee

For more information about the Family Advisory Council, please send an email to FAC@partners.org.