FAC YAC Impact Report Sept 2020 - July 2021

Sept 2020-July 2021

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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The Youth Advisory Council welcomed Ali Spikestein, CCLS, Brittany Mccrary, NP, Janna Rosario, NP, and Lauren Powledge, SW, to discuss their pediatric transition program for patients treated at the Blau Center for Pediatric Cancer and Blood Diseases. Although the transition program’s focus is pediatric patients with sickle cell disease, YAC members engaged in a broader discussion about transitioning from pediatric care to adult medicine. YAC members proposed important considerations, shared anecdotes and validated the presenter’s goal of formalizing a transition program for adolescents living with chronic illness.

Jennifer Kero, Clinical Manager for Quality and Safety, joined a council meeting to discuss strategies to improve the hospital discharge process for pediatric patients and families. YAC members eagerly shared their experiences and ideas to enhance education, preparation for discharge and communication with the medical team. With support from the pediatric quality and safety team, the Council will remain engaged in this important work.

Youth Advisors met with members of the Child Life and Creative Arts Therapy team to brainstorm ways to enhance adolescent programming. Youth advisors shared ideas related to both in-person and remote programming, with a focus on community building and peer relationships.

The FAC welcomed several hospital leaders as guest presenters. Presenters invited council members to share their perspectives on hospital wide programs and initiatives in order to improve the patient experience. Presenters included Dr. David Reich, Dr. Fernando Ferrer, Dr. Lisa Satlin, Dr. Lindsey Douglas, Dr. Anthoney Lim, Dr. Shirish Huprikar, and Dr. Christopher Strother.

The FAC worked with the Patient Experience Team to lend their expertise in the development of a revised Press Ganey Patient Experience Survey. Family advisors gave their input on the format and content of key questions, as well as their recommendations regarding overall survey administration.

The FAC provided feedback on environmental renovation projects in the Pediatric Emergency Department and on the P5 pediatric unit, helping to ensure that the patient and family perspective remains at the forefront of these quality improvement initiatives. (continued on page 2) 1

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Building Inclusive Healthcare for LGBTQ+ Youth The Youth Advisory Council welcomed physicians Michelle Mikhno and Scott Jelinek to discuss their team’s quality improvement project “Improving the Collection and Utilization of Patients' Sexual Orientation and Gender Identity (SOGI) Information, Preferred Names and Gender Pronouns”. At the time of this discussion, a standardized way of collecting and documenting SOGI information for patients in the outpatient setting did not exist. The goal of this project was to train providers to ask patients 12 years old and over their preferred name, their pronouns, and their SOGI information. It was the hope of this team that the increased documentation, acknowledgement and incorporation of a patient’s SOGI information would lead to enhanced patient experiences and robust physician, patient relationships. Dr. Mikhno and Dr. Jelinek acknowledged the importance of understanding their patient’s SOGI information, identifying it as a vital step in the affirmation of a patient’s identity and fundamental to the mental and physical health of their adolescent patients.

Members of the Council reinforced the importance of this initiative by sharing personal stories, recounting past medical encounters and reflecting on shared experiences. These conversations also provided concrete suggestions for the project including the importance of provider language when discussing SOGI information, confidentiality, strategies to obtain accurate SOGI information, and the value of ongoing assessment.

The Voice of Teens: Social Justice, Diversity and Inclusion REFLECTIONS, previously known as SURGE magazine, has provided a longstanding platform for teens within the Mount Sinai community to share their creativity and perspective. For this most recent issue, members of the Youth Advisory Council collaborated with the Child Life and Creative Arts Therapy Department to publish a special edition of REFLECTIONS focusing on social justice, diversity and inclusion. As the art directors note, “this collection of meaningful, honest and thoughtful work reflects the lived experiences of our teens and young adult patients” during a pivotal time.

As the pandemic loomed in the background, youth advisors created the space to participate in zoom meetings to bring forward their feelings, frustrations, hopes and insights related to racism, disparity and bias. As one youth advisor writes in a piece titled, Diversity and Inclusion in the Media, “I am a black girl that loves math, science, music and many other things. Just as I am more than my illness, I am more than my skin. I am much more than you see.” Another member writes, “To love others, we must also learn how to love ourselves first, to be proud of our individuality and differences. Leave behind the prejudices and discrimination and take upon our humanity and equality.”

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

Actions Toward Advancing Patient and Family-Centered Care (continued from page 1)

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Child Life staff members Jaclyn Craig, LCAT, and Stefani Tower, CCLS, joined a Council meeting to seek insight and feedback on the creation of a new therapeutic activity guide for children of adult patients.

Family and Youth Advisors met as a joint group with Dr. Reich to discuss their experiences and perspectives with pediatric phlebotomy at Kravis. Group discussion focused on the emotional and psychological impact of pediatric phlebotomy encounters and the critical importance of patient and family centered care.

NICU FAC provided revisions for the NICU Welcome Packet that each family receives when they are admitted to the NICU to help orient them to the challenging experience of having a newborn in the hospital.

NICU FAC created a supplementary discharge packet to help address what they experienced as a gap in services regarding the psychosocial needs of families once they leave the NICU.

Focus Groups: An Expansion of Family Engagement Work at Kravis Over the past year, there have been several family engagement focus groups regarding various Kravis initiatives. A focus group is a small group of family advisors that meets outside of FAC meetings to provide feedback to clinicians and administrators on a particular topic. Multiple parent advisors who have participated in these focus groups met to discuss their experiences and they had the following to say: The establishment of and consistent need for focus groups illustrates the fact that the patient and family engagement process at Kravis is thriving and expanding. So many frontline and administrative groups are requesting the unique patient and family perspective that an additional forum outside of the monthly Council meetings developed organically to meet this growing need. One theme that surfaced from this year’s focus groups is the idea that clear, candid, and plain-language communication is at the core of successful patient and family centered care. Another key theme is that no one formula or pathway fits each and every patient and family. Rather, the need for embedded flexibility and individualization within a clinical pathway is essential in order to serve each unique patient and family.

The aspiration of the family advisors within this context is to assist hospital staff in expanding their viewpoints, to encourage them to question their work, and to think beyond their clinical perspective. The family advisors hope to inspire staff to step outside of their comfort zone and imagine stepping inside the shoes of their patients and families in order to optimize care for everyone that enters the Mount Sinai’s Kravis Children’s Hospital.

Expanding Equitable Care for Spanish Speaking Families in the NICU NICU Family Advisory Council member Andrea Hickson collaborated with Trish Ringley, NICU nurse and founder of Every Tiny Thing this past fall to help make one of their existing products available for Spanish speaking families.

The mission of Every Tiny Thing, is to design products and gifts that will help make the NICU experience easier and more enjoyable for families. A NICU stay is often unexpected and can be overwhelming and confusing for new parents, so NICU families at Mount Sinai receive a specialized NICU journal from Every Tiny Thing to help them keep track of the information they are receiving from the medical team, as well as have a place to process their NICU experience. However, this resource was only available in English, so Trish and Andrea worked together to create a Spanish version to help expand the number of families that could benefit from this resource, not just at Mount Sinai, but at NICUs across the country.

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 To learn more about the NICU Family Advisory Council, contact: lindsay.davis@mountsinai.org

Drea patiently reviewed our journal, making sure it was appropriately and sensitively translated, which required the knowledge of someone with personal NICU experience.. Drea was a delight to work with, and the time & effort she offered to this Spanish translation will surely help NICU families for years to come.

Trish Ringley, Every Tiny Thing Founder

I'm so glad I got to participate in the revising phase of this journal from English to Spanish. When our daughters were in the NICU, journaling was a helpful way for me to process their progress each day. Expanding this journal to other languages is such a gift.

Andrea Hickson, NICU Family Advisory Council Member

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A Joint Endeavor: Parent and Youth Council Dyads

Patient and Family Engagement Steering Committee Members

Family and Youth Advisors from the same households had the opportunity to sit down and ask each other a few questions about their respective Council experiences.

These are some of their reflections.

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You bring so much of yourself and your hospital experiences to being a Council member. What drives you to do this work and how has the experience impacted you personally?

Youth Response: I know that my experience and input will directly impact practices within pediatrics and it will help other kids have a better time. The work impacts me personally because I’ve changed the way I look at sickle cell disease. I now look at it as something that has given me meaningful opportunities.

Parent Response: It really started when my daughter would talk about all the things the YAC was doing and how her opinions were really being valued and ideas were starting to take effect. It felt good as a parent to see such a positive reason to be connected to the hospital. I saw that it made looking back on time spent in the hospital more than its association with sickle cell pain.

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What’s the most meaningful project that you’ve worked on with your Council this term?

Youth Response: The initiative to talk with Dr. Reich about blood work and the concerns we as patients and parents have was very impactful and poignant. Being able to give medical professionals an understanding of the patient’s perspective, which is often overlooked, is meaningful in itself and that is the goal of the Council.

Parent Response: The opportunity to have a robust conversation about HAC (Hospital Acquired Conditions) issues within Kravis. It was addressed in an impactful manner. We discussed solutions and ways that we can improve quality and health issues throughout the hospital.

What does it feel like to collaborate with other members on your Council and has this group experience impacted your personal perspective?

Youth Response: It feels really liberating to engage with people who have similar experiences to me. Dealing with illness and repeated hospital visits can be incredibly isolating so knowing you’re not alone brought a lot of comfort to me. Because each of us has different experiences with the hospital, it is very helpful to see other views and perspectives. Aspects of the hospital become apparent through my peers’ experiences. I have become a more empathetic and understanding person through the experiences that we’ve shared together.

Parent Response: Each individual within the Council provided something so special and insightful at every meeting. Working with the council members helped me understand that we have to incorporate various patient and family perspectives when we discuss ways to improve the patient experience.

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Diane Rode, Director, Child Life and Creative Arts Therapy Department Morgan Stojanowski, Assistant Director, Child Life and Creative Arts Therapy Department Nina Connors, Pediatric Oncology Social Worker Cheryl Strauss, Senior Child Life Specialist Lindsay Davis, Senior Child Life Specialist Rafael Acal Jimenez, Associate Director of Nursing, Women and Children’s Services Lindsey Douglas, Medical Director, Pediatric Hospital Medicine Jen Kero, Clinical Program Manager, Pediatric Quality and Safety Evelyn Zambrano, Parent Advisor Jo Murray, Senior Parent Advisor Andrea Johnston, Senior Parent Advisor Dr. Laura Hodo, Inpatient Quality Director, Pediatric Hospital Medicine Linda Valentino, VP Nursing Operations Dr. Fernando Ferrer, Chief Physician Executive

council to seek knowledge on the patient experience, they leave saying they never thought about some of the instances we brought up. It’s so interesting to see adults who you feel know everything and have everything figured out share their vulnerability and humility in addressing that they do need reminders. We’re all figuring these things out together and we can all help each other. It is incredibly validating and inspiring to continue our work.

Parent Response: It was good to hear staff and experts in their areas share their process and ideas and be so open to learning from families’ experiences to improve their practices.

Is there anything else that you would like to share about your experience on the Council?

Youth Response: I have seen the Council grow from just an idea to having direct immense impact on how I am treated as a patient. Listening to the people you serve is incredibly important and can only lead to better relationships and more effective help. I would love it if both councils got more publicity because I truly believe if more people knew it existed, they couldn’t wait to share their input.

Parent Response: It has been an honor and absolute pleasure being on this council. What we’ve accomplished thus far has been nothing short of amazing and awe-inspiring. I am so proud that we as a team as a council made a difference within Kravis because we had one goal and it was to improve the patient experience on a daily basis.

Point your cell phone camera at this code to hear our council members speak about their experiences!

What was it like to interact with staff presenters from various disciplines/areas within the health system at the monthly Council meetings?

Youth Response: Every time staff has approached the 4

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