Family Advisory Council

The Family Advisory Council is a partnership of family members, hospital leadership, and staff dedicated to working together to improve the care and experience of patients and their families. We are a diverse group of family members whose children have received care at Mass General for Children (MGfC). The FAC is co-chaired by a family member and a staff member. The Council is integral to the Pediatrics Department, providing input and guidance around clinical practice, program planning and education, and the family experience. The Council is the longest standing active advisory group of patients and families at MGH. It has a particular focus in helping MGfC care teams’ practice with a family-centered perspective.

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

Mission

The Massachusetts General Hospital for Children 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 the hospital.

Activities and Accomplishments – 2022-2023

Goal Setting – Each year the parent and patient membership of the Council vote on four goals to pursue for the upcoming year. The goals are chosen based on members’ experiences of care in the hospital. This year we selected the following topics:

  1. Focus on mental health of families and staff.
  2. Help to disseminate the F-Words curriculum throughout the hospital.
  3. Collaborate with MGfC Patient Experience and Quality & Safety teams to measure the impact of 2 PFA-led Ether Dome Challenge projects: support after discharge & resource app.
  4. Engage more families in FAC activities.
  • Ether Dome Challenge: “Support After Discharge” project – Three PFAs have worked throughout the year with staff from the MGH Center for Innovation in Care Delivery and the Healthcare Transformation Lab to devise solutions to problems encountered by parents of children with complex medical needs after discharge from the hospital, most specifically which providers to contact for help with a medical issue and whether to go to the Emergency Department. They have surveyed providers and parents to gather data to craft possible solutions and consulted with experts in the field of patient experience. The project is ongoing.
  • Ether Dome Challenge: “Resource App” project – One PFA and the PICU Nurse Director have worked throughout the year with staff from the MGH Center for Innovation in Care Delivery, the MGH Healthcare Transformation Lab, and the MGH Center for Innovation in Digital Healthcare to develop an app that will contain all the available information a parent needs when their child is admitted to the Pediatric Intensive Care Unit. The project is ongoing.
  • Mindfulness Meditation Videos in Spanish – Last year, Miri Bar-Halpern, a parent member who is also a clinical psychologist developed 7 mindful meditation audios that are available on the MGfC website and YouTube channel that are used by parents and providers alike. The videos have now been translated into Spanish. Thus far, the videos in English have been viewed on YouTube 1,268 times and the ones in Spanish have been viewed 222 times.
  • Patient Experience Working Group – 2 FAC parents collaborated with a diverse group of hospital stakeholders to generate lists of tactics departments can use to increase courtesy and helpfulness of front desk staff.
  • F-Words in Childhood Disability – Mara Yale, FAC parent and head of the Pediatric Stroke and Brain Education program at MGfC spearheaded an effort, along with support from FAC, to bring CanChild F-Words in Childhood Disability trainings to key departments and teams at the hospital. Several FAC parents joined the training that were developed and presented by the CanChild team at McMaster University in Canada.
  • Family Advisory Council Grand Rounds – In May, the Family Advisory Council sponsored its 13th annual Grand Rounds in which it again highlighted a partnership between providers and parents. Family Advisory Council parent Mara Yale, PhD discussed the Pediatric Stroke and Brain Injury Education program she leads. She was joined by Drs. Patricia Muscolino and Brian Wishart. The team presented the Pediatric Stroke Team’s implementation of ‘F-words in Childhood Disability’ an approach that focuses on function, family, fitness, fun, friends, and future.
  • Wayfinding at Newton-Wellesley Hospital – Parents on the Family Advisory Council provided feedback to the MGfC Quality and Safety team who developed wayfinding instructions to help parents find their way to pediatric primary and sub-specialty care at Newton-Wellesley Hospital.
  • Joint PFAC event – FAC members attended the Joint PFAC event titled ‘A Conversation with Dr. William Curry, Chief Medical Office, MGH/MGPO and participated with him and other hospital leaders in a conversation about a shared vision to continually improve the patient and family experience.
  • Annual Social Gathering – In July 2023, FAC members met for our annual social gathering, a practice we have not undertaken since the pandemic. Given the fact that most of our meetings are now virtual, the original intention of fostering stronger social connections between FAC members is even more important. A good time was had by all!
  • Magnet Event – Lynnette Lovosco, PFA, participated in a session with outside Magnet appraisers, community organizations, and patients and parents to discuss how participants have worked with MGH nurses. Magnet is the highest recognition bestowed on healthcare organizations for excellence in nursing.
  • Patient Education Documents – FAC parents continued to review patient education documents developed by the MGfC editor for clarity and relevance to the wider MGfC parent and patient community.
  • Parent Connection – The MGfC editor and FAC continued to publish Parent Connection, the hospital’s parent-facing newsletter featuring staff profiles, events, upcoming talks of interest to parents and patients and a quarterly spotlight on Family Advisory Council activities.
  • Yvonne Munn Nursing Research Grant – Emily Lloyd RN, BSN, Family Advisory Council staff member, won the Yvonne Munn Nursing Research Grant for her proposal addressing the effectiveness of journaling to reduce stress in the PICU setting. Emily’s coinvestigator is fellow FAC member Kim Whalen, RN, MS, CCRN, Nurse Director of the PICU. Emily and Kim were inspired by the work of Faith Wilcox, a FAC parent who had used journaling to reduce stress when her child was hospitalized. Faith created Journals of Hope, a program that donates journals throughout the inpatient departments, including the PICU.
  • New Physician in Chief – Joanne Wolf, MD, new Physician in Chief at MGfC joined the January meeting to introduce herself, discuss her commitment to the importance of parent and patient engagement, and learn about FAC activities.
Topics Reviewed by and Presented to the MGfC FAC
  • Parental Mental Health in the Neonatal Intensive Care Unit (NICU) – Victoria Grunberg, PhD, Department of Psychiatry, and Giselle Vitcov, Research Coordinator in NICU, presented their research in the MGfC NICU on parents’ emotional distress and mechanisms they’ve devised to promote resiliency, coping and relationship functioning.
  • Parents of Children with Complex Medical Needs – Justine Dellaria, LICSW and Sandra Clancy presented research highlighting the mental health challenges faced by many parents of children with complex needs and an integrated behavioral health approach that some parents have found beneficial.
  • Acute Hospital Care at Home for Pediatric Patients – Dr. David Levine and Martie Carnie, Senior Patient Experience Coordinator, discussed efforts to expand the MGB hospital at home initiative to pediatric patients, a randomized clinical effectiveness trial he is conducting, and solicited feedback from FAC parents on his work.
  • Reflective Practice – Robert Meyer MD and Susan Hata MD, Co-Directors of Wellness for MGfC oversaw an interactive session in which FAC members (providers, staff, and parents) reflected on their experiences of care at the hospital and discussed in small groups. This session is like ones offered to provider groups throughout the hospital.
  • Mental Health of Caregivers – Nancy Rotter PhD, Director of Psychology and Child and Adolescent Psychiatry discussed her efforts to integrate behavioral and mental health supports for parents/caregivers within several departments. Specifically, she discussed screenings for food allergy anxiety within patients and parents in the Food Allergy Department.

MGfC FAC Member Participation in Committees and Initiatives

FAC members continued to participate in ongoing committees, task forces, and initiatives across the hospital and system, providing the patient/family perspective within interdisciplinary groups.

  • Pediatric Ethics Committee – One parent member of FAC sits on this Committee that provides guidance on ethical dilemmas that present themselves in the hospital setting.
  • Pediatric Ambulatory Patient Experience Committee– A working group that is made up of several stakeholders to examine ways to improve patient experience results around front desk courtesy and respect has PFAs as members.
  • Pediatric Quality and Safety Committee– Multidisciplinary committee that oversees quality and safety efforts at MGfC has one parent member.
  • Ether Dome Challenge Working Groups – Four FAC members serve on two EDC Working Groups, meeting one time per month for a year to provide patient experience perspectives on problems families often have post-discharge and information families need during a PICU stay.
  • FAC Membership Committee – 2 PFAs review applications and weigh in on membership decision.

Additional Activities & Accomplishments

  • Recruited 3 new PFAs and one new staff member.
  • Two new PFAs on the Membership Committee.
  • One PFA has begun working with the Pediatric Stroke Team to explore the possibility of improving screenings for children with Cortical Visual Impairment.
  • One PFA is planning to work with the MGfC Child Life team to develop activities for children that they can take home with them post-discharge.

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