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 MassGeneral Hospital for Children (MGHfC). 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 MGHfC 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:
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 – 2020-2021
Goal Setting in the context of Covid-19 – During our annual goal setting session, staff posed this question to parents: Is MGHfC meeting your needs at this time? Parents noted that they were experiencing isolation in the context of inpatient stays and needed more guidance around protecting their children from the Covid 19, especially children with complex medical needs. Our goals for the year (below) reflect our efforts to take direct action to meet families’ needs.
- Parent Support in PICU/NICU and the wards – Parent members voiced a desire for more parent-to- parent supports so that they could interact with parents whose children’s health journeys are like their own. FAC put together a list of all parent-to-parent programs at MGHfC and have distributed it to social workers in the NICU, PICU and wards so they can alert appropriate families to the existence of the programs.
- Development of a parent-facing newsletter – Given the high-quality educational material generated by MGHfC and its providers, the Family Advisory Council is investigating the feasibility of creating a parent-facing newsletter modeled on Totline, an internally-focused monthly newsletter. This will enable all parents to have easy access to the educational materials developed by hospital personnel.
- Development of process for parents to advise on patient experience data – The group received quarterly summaries of patient experience metrics from the Director of Quality and Safety. The group is strategizing ways for parents to be involved in the development of improvements based on the data.
- Creation of online relaxation and meditation sessions – Dr. Miri Bar Halpern, parent member and clinical psychologist, created 6 mindfulness meditation audios that have been posted on the MGHfC YouTube channel and are available to parents. In collaboration with the PICU, she developed brochures to alert parents of their existence so that they can take advantage of this support during their children’s stays.
- Family Advisory Council Grand Rounds – Members of the Family Advisory Council and several staff members spoke at Pediatric Grand Rounds about the Journals of Hope program created by FAC parent and co-chair Faith Wilcox. The program now provides journals and writing prompts to parents, guardians and children in the NICU, PICU, Pediatric Wards and Radiation Oncology. Parents spoke about the beneficial aspects of writing in a journal when they were experiencing long hospital stays with their children, while staff members talked about their role in the development of the program and their own experiences of journaling for stress relief. Several members of the audience voiced their desire to extend the program to their departments.
- Website updates/contributions – The group worked with website development and marketing to update the ‘News’ section of the MGHfC website with stories about FAC and sections of videos parents had produced on the subject of why they chose MGHfC for their children’s care.
- Bedside Rounding Surveys – FAC parents filled out surveys provided by the MGHfC Residency Program about their preferences surrounding morning rounds. These included questions about parents’ understanding of the purpose of rounds, their desired levels of participation, and comfort in taking part in discussions during them.
Emily Kung, MD presented the work of the MGHfC Diversity, Equity and Inclusion Committee and received feedback from FAC members
Katherine Schiavoni, MD from the MGH Integrated Care Management Program asked for parents’ feedback on plans to improve transitions from inpatient pediatric to adult care for patients with complex medical needs
Caitlin Li, MD, Harvard Medical School Fellow in Patient Safety and Quality joined two meetings to observe the workings of a Family Advisory Council
Ellen O’Donnell PhD and Mary Bennett LICSW from the Pediatric Diabetes Transitions Program spoke to the group about their program that prepares pediatric patients for the world of adult medicine and is a model for other departments
Emma Materne, MD apprised the group of efforts to improve the practice of bedside rounding. FAC parents have a long history of providing their feedback based on their experiences of care. Parents’ feedback will inform the changes made to the current processes
Dr. Miri Bar Halpern, parent member and clinical psychologist, spoke to the group about her experiences of long hospital stays in the PICU, the traumatic effects of such stays, and ways staff and parents can mitigate those effects. She had previously given the presentation to PICU staff.
Throughout the pandemic, hospital staff and leadership thoroughly apprised the group of the hospital’s current policies around Covid 19, measures undertaken to ensure patient safety, as well as case numbers in the hospital and throughout the state
MGHfC FAC Member Participation in Committees and Initiatives
Family Advisory Council 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 – Hospital-wide committee that reviews and consults with staff about ethical issues regarding care of children who are MGHfC patients
- Inpatient and Outpatient Patient Experience Committee – Committee focused on improving the experience for patients and families throughout the hospital
- Quality and Safety Committee – Hospital-wide committee that oversees safety initiatives and evidence based- care models to ensure high quality, safe and patient-centered care to MGHfC families
- Gun Violence Prevention Committee – MGH-wide multidisciplinary committee dedicated to preventing firearm-related violence and promoting safety in the homes and communities of the patients MGH serves
- Transitions Committee – Committee whose mission is to facilitate the transition from pediatric to adult care for inpatients.