GCH Family Connection Program Questionnaire

Your first name

Your last name

Your Middle Initial
(requested as some engagement opportunities require a background check)

Your birthdate
(requested as some engagement opportunities require a background check)

Preferred email address

Preferred phone number

Mailing address

Zip Code

Town or City (may be different than your mailing address)

County

School district you feel most associated with (public or private)

Race
(If applicable choose more than one category)

Nationality

Primary family language
(feel free to indicate more than one)

Please share other language(s) spoken

Do you have a family religion or faith tradition that you would like to identify?

What is your gender? (check all that apply)

If you would like to share further about gender:

Your Pronouns
(example: she/her/hers)

How many of your children have been treated at UR Medicine Golisano Children's Hospital?
(If more than one child, complete the fields below for each child individually)

Name of first child treated at GCH
(first and last name)

Child's birth year

Diagnosis or diagnoses for this child

What is the overall current status of this child?

Child's year of death

Inpatient units where this child received care.
(if care was received in the old hospital please select "other")

Outpatient departments where this child received care.

Did this child need the support of any medical devices at home?

What kind of medical device(s) did this child use at home?

Please specify the other medical device(s) used by this child at home.

What type of feeding tube has this child used? Check all that apply.

Did this child need home nursing?

Child's hobbies or interests:

Name of second child treated at GCH
(first and last name)

Child's birth year

Diagnosis or diagnoses for this child

What is the overall current status of this child?

Child's year of death

Inpatient units where this child received care.
(if care was received in the old hospital please select "other")

Outpatient departments where this child received care.

Did this child need the support of any medical devices at home?

What kind of medical device(s) did this child use at home?

Please specify the other medical device(s) used by this child at home.

What type of feeding tube has this child used? Check all that apply.

Did this child need home nursing?

Child's interests or hobbies

Name of third child treated at GCH
(first and last name)

Child's birth year

Diagnosis or diagnoses for this child

What is the overall current status of this child?

Child's year of death

Inpatient units where this child received care.
(if care was received in the old hospital please select "other")

Outpatient departments where this child received care.

Did this child need the support of any medical devices at home?

What kind of medical device(s) did this child use at home?

Please specify the other medical device(s) used by this child at home.

What type of feeding tube has this child used? Check all that apply.

Did this child need home nursing?

Child's interests or hobbies:

Name of fourth child treated at GCH
(first and last name)

Child's birth year

Diagnosis or diagnoses for this child

What is the overall current status of this child?

Child's year of death

Inpatient units where this child received care.
(if care was received in the old hospital please select "other")

Outpatient departments where this child received care.

Did this child need the support of any medical devices at home?

What kind of medical device(s) did this child use at home?

Please specify the other medical device(s) used by this child at home.

What type of feeding tube has this child used? Check all that apply.

Did this child need home nursing?

Child's interests or hobbies

Name of fifth child treated at GCH
(first and last name)

Child's birth year

Diagnosis or diagnoses for this child

What is the overall current status of this child?

Child's year of death

Inpatient units where this child received care.
(if care was received in the old hospital please select "other")

Outpatient departments where this child received care.

Did this child need the support of any medical devices at home?

What kind of medical device(s) did this child use at home?

Please specify the other medical device(s) used by this child at home.

What type of feeding tube has this child used? Check all that apply.

Did this child need home nursing?

Child's interests or hobbies:

Name of sixth child treated at GCH
(first and last name)

Child's birth year

Diagnosis or diagnoses for this child

What is the overall current status of this child?

Child's year of death

Inpatient units where this child received care.
(if care was received in the old hospital please select "other")

Outpatient departments where this child received care.

Did this child need the support of any medical devices at home?

What kind of medical device(s) did this child use at home?

Please specify the other medical device(s) used by this child at home.

What type of feeding tube has this child used? Check all that apply.

Did this child need home nursing?

Child's interests or hobbies:

Name of seventh child treated at GCH
(first and last name)

Child's birth year

Diagnosis or diagnoses for this child

What is the overall current status of this child?

Child's year of death

Inpatient units or outpatient departments where this child received care.
(if care was received in the old hospital please select "other")

Outpatient departments where this child received care.

Did this child need the support of any medical devices at home?

What kind of medical device(s) did this child use at home?

Please specify the other medical device(s) used by this child at home.

What type of feeding tube has this child used? Check all that apply.

Did your child need home nursing?

Child's interests or hobbies:

Is there a program or opportunity that interests you? See descriptions and check the appropriate box/boxes below.

1. Quality Improvement Family Advisor:
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.
Advisors who join a QI team must:
1) take a one-hour virtual Unconscious Bias Training for Volunteers
2) Sign a HIPAA form
3) Sign the ICARE Commitment
4) commit to participating on that team for a certain length of time (typically once a month for one year).

2. Buddy Program:
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 a similar journey (a Buddy Mentee).
Buddy Mentors must:
1) take a one-hour virtual Unconscious Bias Training for Volunteers
2) Sign a HIPAA form
3) Sign the ICARE Commitment
4) Take a one-hour empathetic listening course and attend a review session
5) fill out a time sheet/log documenting interactions with Mentee.
*NICU Buddy Mentors must be 2 years out of the NICU to participate.

3. Sharing Hospital Experiences with the Public and Hospital Staff:
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.

4. Pediatric Bereavement Advisory Board
Under the direction of Liz Conrow, Pediatric Bereavement Coordinator, this group meets twice a year to improve bereavement resources and opportunities for newly bereaved families. Recent projects include updating the bereavement website (https://www.urmc.rochester.edu/childrens-hospital/bereavement.aspx), participating in the Bereaved Parent Educator Program, speaking to funeral directors about supporting bereaved parents and developing the bereaved parent buddy program.
Participants must :
1) take a one-hour virtual Unconscious Bias Training for Volunteers
2) Sign a HIPAA form
3) Sign the ICARE Commitment.

5. Pediatric Family Advisory Council:
Medical staff may present an idea to the group for feedback. Meet (currently by Zoom) the 2nd Tuesday of the month from 5:30-6:30 PM (no meetings in July or August). Council website: https://www.urmc.rochester.edu/childrens-hospital/quality/patient-family-experience/pediatric-family-advisory-council.aspx
Participants must:
1) take a one-hour virtual Unconscious Bias Training for Volunteers.

6. Family Support (in-person) formerly called "Parent-to-Parent":
When visitation guidelines allow this is an in-person opportunity for families who have been in the NICU to support families 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. Program website: https://www.urmc.rochester.edu/childrens-hospital/neonatology/nicu-family-support.aspx

Below are some of the topics we are looking at or plan to look at in the future. By checking the box/boxes below you are indicating you both have lived experience with the topic and are interested in being a part of a quality improvement committee addressing that topic.

Below are some of the Buddy Programs we already have or are setting up. Please indicate which one(s) you are interested in training to be a Mentor for.

Other things you want to share with us about you and your family or the ways you want to support Golisano Children's Hospital:

Do you remember how you first heard about the Family Connection Program? Was there someone who recommended you get involved?

Families you would recommend to join the Family Connection Program (and a way to contact them):