YAC FAC Annual Patient and Family Engagement Impact Report August 2020

Sept 2019-July 2020

The Child Life and Creative Arts Therapy Department

The Councils at a Glance The Youth Advisory Council (YAC), established in 2015, enhances the delivery of pediatric care by recognizing and addressing the specific needs of our youth population. Now in its fifth year, the YAC is comprised of members ranging in age from 13 to 20. Monthly council meetings, facilitated by Morgan Stojanowski, Child Life Specialist, and Nina Connors, Social Worker, empower members to collaborate on a range of patient-care projects and bring actionable recommendations to improve the patient experience.

The Family Advisory Council (FAC), established in 2009, works jointly with leadership and interdisciplinary staff to ensure the delivery of the highest standard of comprehensive and compassionate health care. The FAC, facilitated by Cheryl Strauss, Child Life Specialist, and Andrea Johnston, Senior Parent Advisor, meets monthly to work on a variety of hospital projects affecting the patient and family experience.

The Neonatal Intensive Care Unit Family Advisory Council, established in 2017, aligns with the patient and family engagement work of the Youth and Family Advisory Councils, providing the parental perspective on initiatives and projects within the NICU setting. The NICU FAC also facilitates regular caregiver events, focusing on the wellness of the caregiver. Monthly meetings are co-facilitated by Lindsay Davis, Child Life Specialist, and Jill Winston, Social Worker.

Actions Toward Advancing Patient and Family-Centered Care  

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Provided feedback on the redesign of the pediatric Emergency Department in advance of a large-scale hospital renovation project to enhance the patient experience.

Recommended ways to educate patients and families about the newly formed Rapid Response Team in Kravis Children’s Hospital. Scripted and filmed an educational video highlighting how families can initiate a call to the team.

Expanded the voice of the councils through an enhanced social media presence, including posting video tips and takeaways from parent advisors during Safety Awareness week.

Advocated for an inpatient postpartum unit devoted to mothers who have babies in the NICU. Provided reasoning and support for this initiative and collaborated with nursing leadership to generate ideas for supportive services and amenities for a dedicated “NICU” postpartum unit.

Provided feedback and suggestions to enhance an upcoming research study investigating how reading to babies in the NICU setting leads to improved developmental outcomes and increased parent-child bonding.

NICU family advisor worked with an organization to expand their supply of journals to include journals written in Spanish. This greatly increases the number of parents that are able to utilize this journal to process and document their NICU experience.

Provided feedback and insight to essential quality improvement initiatives, including family-centered rounding and the CLABSI safety card.

Supported the development of COVID-19 resources for patients and families, including educational materials and PSA videos.

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Councils Exemplify Resiliency During the COVID 19 Pandemic With the start of the COVID-19 Pandemic, the Councils seamlessly shifted from onsite to virtual meetings where members could safely come together to fulfill the groups’ collective mission. At each meeting, attendance remained strong, agendas full, and energy high. The Councils explored challenges posed by COVID-19 in the hospital setting and helped shape initiatives such as a KidZone TV Public Service Announcement explaining new visitation guidelines and other changes in practice to patients and families. Council members also provided support to one another and to the healthcare community during this difficult time, working on initiatives such as adapting KidZone TV Bingo to highlight self-care strategies and creating a heartfelt video message of appreciation for hospital staff. Of special note, celebrated magician David Blaine joined a council session with the youth advisors and shared his unique talent, making a powerful impact at a time when the value of human connection is at the forefront of everyone’s mind.

Point your cell phone camera at this code and follow the prompt to see our message of appreciation!

The Voice of Teens in the Time of the Pandemic In hopes of better understanding the influence COVID-19 had on the hospital’s pediatric patients, members of the Youth Advisory Council partnered with the Child Life and Creative Arts Therapy Department to publish a special edition of Surge Magazine, a bi-annual teen literary magazine curated by the department. This collaboration brought forward the feelings and perspectives of our youth advisors, giving voice to the adolescent experience of COVID-19. Even during the height of this pandemic, when youth advisors were isolated in their homes navigating remote learning and trying to address their own medical needs, they created the space and time to participate in facilitated Zoom meetings to discuss their feelings of isolation, productiveness and “mixed” emotions. Through creative writing prompts and various art modalities, they were able to put their fears, uncertainties and victories on paper. From their insights and from the insights of participating staff, Mount Sinai is in a better position to appreciate and understand the needs of this community. The artwork and writing pieces are published in our Summer/Fall 2020 edition.

Point your cell phone camera at this code and follow the prompt to read our SURGE library!

The Connection of Feelings Between Us, by Jasmeen Kaur

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Clinical Research Focus Group When physicians Dr. Bruce Gelb and Dr. Karen Wilson wanted input on a COVID-19 clinical research study in pediatrics, they recognized the critical role of the patient and family voice. In short time, a focus group of family and youth advisors met with the physicians and council leaders on Zoom to lend their perspectives to this project. The group, which included three parent advisors and one youth advisor, discussed their overall reactions to the study at hand before engaging in dialogue about the sensitivity of consenting families to participate in research in the midst of a critical healthcare encounter. Advisors stressed the importance of careful scripting so that all researchers present the opportunity to families as well as patients in a simple and clear manner, using plain language and minimal medical terminology. The group also considered the best time to approach families and patients to participate in the research, with advisors expressing different points of view and coming to consensus that researchers would need to consider the coping and readiness of each prospective family to determine the best time to make the approach.

Participants raised the topic of healthcare equity and the importance of ensuring that the program is applied equitably. The focus group concluded with a message of appreciation from the physicians as well as their excitement to explore the role that the councils can play in future research discussions.

Parent to Parent Support in the NICU The NICU Family Advisory Council recruited four new members during the 2019-2020 term, bringing the number of parents on the council to ten. The entire group received a training in peer-to-peer support at the beginning of the year in preparation to help facilitate monthly coffee evenings for current NICU parents, as well as host special holiday events - as they know first-hand that it can be particularly difficult to spend special occasions in the NICU while others are at home celebrating with their families. FAC members are on hand at these events to listen to stories from families experiencing the NICU for the first time and offer some comfort from the perspective of parents who have walked this path already. The NICU has received positive feedback from current NICU family members who have attended, and FAC members have expressed that the interactions they have at these events are a very meaningful way for them to give back.

To learn more about the Youth Advisory Council, contact: morgan.stojanowski@mountsinai.org To learn more about the Family Advisory Council, contact: cheryl.strauss@mountsinai.org Kevin Janus, council member, helps to facilitate NICU Mother’s Day event.

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Equity and Inclusion as a Foundation of Patient and Family Engagement

Patient and Family Engagement Steering Committee

The councils are committed to bringing the topic of racism to the forefront by exploring ways in which they can represent a diverse perspective while advocating for equitable care. Councils, in partnership with hospital leadership, are dedicated to considering all projects and initiatives through the lens of equity and inclusion. As Thalya Onelien, a youth advisor, explains “As a BIPOC (Black, Indigenous, People of Color), racism and inclusion are always at the forefront of my mind. In addition, my health is also at the forefront due to my identity as a chronically ill person. The intersection of these topics are significant. Anyone in a hospital setting shouldn’t have lingering anxiety about their care being just, valid, and adept.”

Family Advisors take Center Stage in Safety

On Friday, November 15, 2019, a group of clinicians and parent advisors from the Mount Sinai Kravis Children’s Hospital attended the annual New York State Solutions for Patient Safety (NYS SPS) conference. The conference, titled “NYS SPS Patient and Family Engagement: Commit to ACTION for Zero Harm,” highlighted the important role of patient and family engagement in the reduction of hospital errors and improved safety culture. Andrea Johnston, Parent Advisor and Co-Facilitator of the FAC, presented on the important role that our councils have played in the development and implementation of pediatric safety initiatives.

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Diane Rode, Director, Child Life and Creative Arts Therapy Department

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Morgan Stojanowski, Assistant Director, Child Life and Creative Arts Therapy Department

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Nina Connors, Pediatric Oncology Social Worker

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Cheryl Strauss, Senior Child Life Specialist

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Lindsay Davis, Senior Child Life Specialist

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Rafael Acal Jimenez, Associate Director of Nursing, Women and Children’s Services

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Juliana Horn, Clinical Nurse Manager

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Dr. Steven Yung, Medical Director Pediatric Quality and Safety

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Jen Kero, Clinical Program Manager, Pediatric Quality and Safety

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Jo Murray, Senior Parent Advisor

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Andrea Johnston, Senior Parent Advisor

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Dr. Laura Hodo, Inpatient Quality Director, Pediatric Hospital Medicine

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Linda Valentino, VP Nursing Operations

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Maimuna Sayyeda, Director of Operations

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