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Golisano Children's Hospital / Quality / Patient & Family Experience

Patient & Family Experience

jennifer Johnson with photo of daughter Grace, in Grace's Garden at the Golisano Children's Hospital.
Jennifer Johnson, Director Family & Community Outreach, Golisano Children's Hospital

Families are the center of a child’s world so it makes sense that families have a role and are recognized as part of the decision-making process at Golisano Children’s Hospital. It fits the mission of continually improving the overall experience for all of our patients and their families. Jennifer Johnson, the Director of Family and Community Outreach at Golisano Children's Hospital has experience as the mom of a patient (2012 Miracle Kid Grace Esposito) and is working to ensure the voice of parents and families go far beyond her own to include different diagnosis, different outcomes, social and ethnic backgrounds, genders, sexual orientations, geographic regions and physical abilities.

Family Connection Program

The Family Connection Program is one way voices of families are heard. The FCP is made of families who have all had either an extended stay or multiple stays at Golisano Children’s Hospital or, in at least one case, may live in the Rochester, NY area but may have to travel outside the state to receive the necessary care. The ideas, insight and feedback from these families is invaluable. The FCP started in 2020.

The FCP is the feeder program for several volunteer family engagement opportunities at GCH. Read more about each one including information about activities, requirements to participate and time commitments. The first step for all engagement opportunities for families is filling out the FCP Intake Questionnaire. It helps us learn about a family’s lived experiences and how they might want to engage.

Contacts

Opportunities for Engagement

Our health care teams are constantly evaluating the way things are done to ensure the best outcomes and care. Adding to the team parents/guardians with lived experience in the topic being evaluated ensures the patient and family perspective is included. Opportunities exist for unit-based projects and hospital-wide improvement efforts. Meetings are often once a month and many can be done via Zoom.

Examples: Workgroups, panel discussions or Small Baby Program

Required training

Unconscious Bias Training for Volunteers (virtual)

Time Commitment

  • Workgroups: often meet via Zoom for one hour, once a month for a year
  • Panel discussion: scheduled as needed

Required paperwork

  1. Intake Questionnaire: https://redcap.link/xdw51hly 
  2. HIPAA form for volunteers
  3. ICARE Commitment
     

Additional Contacts

Wendy Hou: Wendy_Hou@URMC.Rochester.edu
​Rebecca Kanaley: Rebecca_Kanaley@URMC.Rochester.edu

(Virtual)

Parents/Guardians who have been through a health challenge with a child and are a few years out from the start of that challenge (a Buddy Mentor) are matched up virtually with a parent/guardian who is just beginning the journey (a Buddy Mentee).

Buddy TeamBuddy Programs

  • NICU Buddy Program
  • Trach Buddy Program
  • G-Tube Buddy Program
  • Bereavement Buddy Program
  • Parents/Guardians of Transgender and Gender Diverse Youth

* NICU families must be 2 years out from their time in the NICU to serve as a NICU Buddy Mentor.
* Other Buddy Programs also have participating timeline suggestions for Buddy Mentors.

Required Training

  1. Unconscious Bias Training for Volunteers (virtual)
  2. Empathetic Listening: Canadian Premature Baby Foundation (PDF or Video format)
    Written form: Introduction to NICU Peer Support 
    Video form:
    CPBF video part 1: https://www.youtube.com/watch?v=yBclR-24Smw&t=685s
    CPBF video part 2: https://www.youtube.com/watch?v=aq4lnQ-a-Hk&t=583s
  3. Read your assigned Buddy Handbook
  4. Attend a Zoom review session with GCH Buddy Program organizers
     

Time Commitment

  1. All required training above must be done first.
  2. Each Buddy Program requires checking in with the Buddy Mentee on a different time table. It may be once a week for 8 weeks as an example. Fill out short paperwork for each time you reach out to your Buddy Mentee.
     

Required Paperwork

  1. Intake Questionnaire: https://redcap.link/xdw51hly
  2. Background check
  3. HIPAA form for volunteers
  4. ICARE Commitment
  5. Write your Buddy bio
  6. Document encounters with your Buddy Mentee.
  7. Fill out survey at end of match.
     

Additional Contacts

Carla LeVant – NICU: Carla_levant@URMC.Rochester.edu
Laine DiNoto – Trach: Laine_DiNoto@URMC.Rochester.edu
Jennifer Aquilina – G-Tube: Jennifer_Aquilina@URMC.Rochester.edu
Heather Wensley – TGDY: Heather_Wensley@URMC.Rochester.edu

Individual stories and pictures are a great way to describe what happens at GCH. We're looking for families interested in giving a speech about their time at GCH with an external audience like at a gala, a luncheon, a golf tournament, or a community service group; or do an interview with the media or our Public Relations staff. We’re looking for families interested in submitting pictures and/or written accounts for social media. We’re looking for families interested in showing up to represent GCH families by working a fundraising event, ribbon cutting, or standing up at a check presentation. Additionally, families may also be asked to share their story and thoughts about the care they received at GCH with an internal audience like a panel discussion or staff improvement retreat.

Required Training

None but we can help craft a speech or prepare you for an interview.

Time Commitment

As opportunities arise

Required Paperwork

  1. Intake Questionnaire: https://redcap.link/xdw51hly 
  2. There is a Media & Social Media HIPAA form you may be asked to sign.
     

Additional Contacts

Betsy Findlay: bfindlay@admin.Rochester.edu
Scott Hesel: Scott_Hesel@URMC.Rochester.edu

Advisors can contribute to the Advisory Board and/or participate in the Bereaved Parent Educator Program in which bereaved parents train Fellows how to share difficult news with families.
Please also see “Buddy Programs” for mention of the Bereavement Buddy Program.

Required Training

  1. Unconscious Bias Training for Volunteers (virtual)
     

Time Commitment

Advisory Board & parent educator program: 2x per year. More info available when interest expressed. Buddy Program is more involved.

Required Paperwork

  1. Intake Questionnaire: https://redcap.link/xdw51hly
  2. HIPAA form for volunteers
  3. ICARE Commitment
     

Additional Contacts

Jennifer Johnson: jennifer_johnson@urmc.rochester.edu

Medical staff may present an idea to the group for feedback.

Required Training

  1. Unconscious Bias Training for Volunteers (Virtual)
     

Time Commitment

Meet (currently by Zoom) the 2nd Tuesday of the month from 5:30-6:30 PM
(No meetings in July or August)

Required Paperwork

  1. Intake Questionnaire: https://redcap.link/xdw51hly
  2. HIPAA form for volunteers
  3. ICARE Commitment
     

Additional Contacts

Carla LeVant: Carla_levant@URMC.Rochester.edu
Julie Michels: Julie_Michels@URMC.Rochester.edu

(In-Person)

Current NICU Family Support

When visitation guidelines allow, this is an "in-person" opportunity for families who have been in the NICU to support families who are there currently, through mentoring, on-unit dinners, scrapbooking, etc.
NICU families must be 2 years out from their time in the NICU to serve as a NICU Family Support.
We hope to expand this support to other units.

Required Training

  1. Unconscious Bias Training for Volunteers (Virtual)
  2. Friends of Strong on-boarding: https://www.urmc.rochester.edu/strong-memorial/friends-of-strong/volunteering.aspx)
  3. Empathetic Listening: Canadian Premature Baby Foundation (PDF or Video format)
    Written form: Introduction to NICU Peer Support
    Video form:
    CPBF video part 1: https://www.youtube.com/watch?v=yBclR-24Smw&t=685s
    CPBF video part 2: https://www.youtube.com/watch?v=aq4lnQ-a-Hk&t=583s
  4. Attend a Zoom review session with organizers.
     

Time Commitment

Could be weekly or bi-weekly or once a month. Can be tailored to your availability.

Required Paperwork

  1. Intake Questionnaire: https://redcap.link/xdw51hly
  2. Friends of Strong requirements:
    -Background check
    -HIPAA form
    -ICARE Commitment
    -Health appointment & proof of vaccines
     

Additional Contacts

Tricia White: Tricia_White@URMC.Rochester.edu
Carla LeVant: Carla_LeVant@URMC.Rochester.edu

 

The Family Connection Program has been consulted on projects like, redesigning safety measures put in place when COVID-19 hit, and thoughts on the creation of a “Sandy Trail” to lead families to the right area of the hospital.

If you would like more information about the Family Connection Program, our patient and family experience initiatives or if you would like Jennifer Johnson to speak at a community or school event, please email her at Jennifer_Johnson@URMC.Rochester.edu

Carla LeVant, Social Work Clinical Manager, Pediatrics
Carla LeVant, L.M.S.W., Social Work Clinical Manager, Pediatrics

Parent Advisory Council

Parents also serve on the Parent Advisory Council. Read more about the Parent Advisory Council.
If you would like more information about the Parent Advisory Council, email Carla LeVant at Carla_LeVant@URMC.Rochester.edu

Resources for Patients and Families

For more information for patients and families about what to expect during a hospital stay or medical procedure, visit these pages on the Golisano Children's Hospital website.