We are so excited you are joining our volunteer team. As a caregiver of a St. Jude patient, you have knowledge to share and we look forward to partnering with you. Please watch the video below as Katie talks about what it means to become a parent adviser.
Patient family-centered care (PFCC) exists every day at St. Jude. It occurs with every patient and family interaction within the hospital. St. Jude focuses on PFCC by understanding the viewpoint of patients and families in every aspect of care.
The Surgeon General first defined family-centered care in 1987. PFCC focuses on the family as the child’s main source of strength, support and well-being. It defines PFCC as a partnership between healthcare staff and parents. The PFCC philosophy shapes policies, programs, facility design and the quality and safety of medical care.
For more than ten years, parent advisers have partnered with St. Jude staff. Efforts began in 2008 as a grass-roots initiative, and since then, parent advisers continually seek to advance family-centered care culture throughout the institution. Advisers ensure that patient family populations at St. Jude are well represented by serving on the Patient Family Advisory Council, Quality of Life Steering Council and Parent Mentor Steering Council. These councils have been instrumental in starting and championing many initiatives including creating and implementing the recommendations to improve the quality of palliative and end-of-life care and the creation and implementation of the parent mentor program. Additionally, parent advisers serve as educators and mentors and have joined many work groups, committees and focus group efforts across all levels of the organization.
St. Jude Children’s Research Hospital embraces a philosophy of patient family-centered care and seeks a respectful, collaborative partnership with the families of our patients, relying on their expertise as their primary source of strength and support for their children. We work with parent advisers in designing parent supportive services, facilities design, parent-to-staff education and adding parent perspective to delivery of care. We value families as central to patients’ well-being and are committed to supporting them in this vital role from active treatment through survivorship and/or bereavement.
- In creating partnerships with patients and families at all levels of care
- In the sharing of information with patients and families in an ongoing and supportive manner
- In respecting the diversity among families and viewing families as allies who contribute to improving the patient experience
- In providing a healing environment inclusive of facilities and programs appropriate to the developmental needs of children and families
- In the creation of policies based on PFCC concepts that promote efficiency, cost effectiveness, quality care, and flexibility
- In providing supportive care to patients and families when their journey goes from active treatment to end of life and bereavement
The Institute for Patient- and Family-Centered Care lists its core concepts as:
- Dignity and Respect: To listen to and honor patient and family ideas and choices and to use patient and family knowledge, values, beliefs and cultural backgrounds to improve care planning and delivery.
- Involvement: To encourage and support patients and families in care and decision-making at the level they choose.
- Collaboration: To invite patients and family members to work together with healthcare staff to develop and evaluate policies and programs.
- Information Sharing: To engage in open, honest, timely and appropriate communication with families.
Thank you for your interest in volunteering at St. Jude. Please read and complete all materials listed below. Different volunteer levels contain different materials and forms to complete. Don’t hesitate to contact us at PFCC@stjude.org if you have any questions or concerns.
Materials to Read
- Overview of Patient Family-Centered Care
- Patient Family-Centered Care Advisor Volunteer Manual
- Code of Conduct Video (4.5 min)
- HIPAA Basics Handout
Forms to Complete
- Confidentiality Agreement
- HIPAA Authorization of Disclosure
- Participation Agreement
- Patient Advisory Council (FAC) Adviser
- Request for Hangtag
- Volunteer FCC Adviser Competency Quiz
Occupational Health Requirements
Before coming to the hospital, and each time you visit the hospital as a parent adviser, we ask that you screen yourself for common symptoms of illness. Exposure to these germs could be harmful to our caregivers and patients. If you feel ill or answer yes to any of the following on the day of your planned campus visit, please notify the PFCC staff and do not come to campus:
- Runny nose - not related to previously known allergies
- Sore throat
- Skin rash
- Pink eye
Please remember to always practice good hand hygiene (hand washing with soap and water or use of an alcohol based sanitizer) while on campus.
Depending on your parent adviser position, you may have additional occupational health requirements that need to be completed before continuing. The PFCC staff will prompt you if this is necessary.
Based on your adviser role, you may have expenses which St. Jude is able to reimburse. These expenses will be related to the role you are assigned. For example, a Parent Mentor may need childcare to be able to meet another parent. A Patient Family Advisory Council member may have travel costs associated with attending a meeting or conference. Some expenses are paid in advance by the hospital and some are initially paid by you and then reimbursed.
For reimbursement, you will need to keep all receipts that include the date, cost, and to whom it was paid. Before any adviser-related travel, you will need to obtain pre-approval for anticipated out of pocket expenses. A PFCC staff member will give you approval in writing.
Please fill out the two forms below to ensure that you get reimbursed for expenses. We will not share your private information unless required for reimbursement.
- W-9 Form: This form is required by internal St. Jude policy and allows for us to reimburse you for approved expenses.
- Direct deposit agreement: Your refund will be deposited directly into the account that you provide us information for. Please return this form with a voided check so that we can begin the process of setting up your direct deposit as soon as possible.
Please return completed forms to Brin Schaechtel (email@example.com), Coordinator, Events and Programs for Family, Guest & Volunteer services, when you attend your first meeting or event as a PFCC adviser.
Paid in advance
by St. Jude
Paid out of pocket
but a reimbursable expense
Not a covered
Airline ticket X Baggage fee (limited to one bag) X Fee when required to have a pre-assigned seat on a flight X Fee to upgrade your seat on a flight X Mileage - car travel > 50 miles from Memphis X Hotel/Lodging X *Hotel parking X X Movies or other hotel services, including food X Ground transportation between airport, hotel and hospital X X Parking at your home airport X Food expenses on campus – for meals not provided by meetings/events X – will be given a cafeteria meal card **Food expenses at hotel, conference or restaurant X – at per diem rate Pre-volunteer health screens/immunizations provided by St. Jude Occupational Health Services X Pre-volunteer health screens/immunizations at facilities outside St. Jude X ***Childcare X – for Parent Mentors; special exceptions may be made
* Hotel parking is a covered expense, but may vary between being prepaid or reimbursed. Self-parking is preferred but not required.
** The meal per diem for breakfast is $14, lunch is $16 and dinner is $26. If you are eating outside of Memphis at a conference or educational activity, the daily food per diem rate will be consistent with the GSA domestic per diem meals and incidental rate found at www.gsa.gov/perdiem.
*** Advisers serving as Parent Mentors have a reimbursable allowance for personal childcare as needed to fulfil this role. Special exceptions may be made dependent on the assignment and need. Other childcare costs are not reimbursable.
The Travel Office has requested that you notify us BEFORE contacting them for arrangements. Please send an e-mail to PFCC@stjude.org stating that you are driving or flying and if you need a hotel room. Once notified, allow 3 business days before making plans with the travel office.
Please book all travel at least three weeks before the event date. Notify PFCC@stjude.org with the details of your travel plans.
If traveling by plane:
Please book airline travel and hotel with the St. Jude Travel Office three weeks prior to the event, but no later than 14 days before the event. You will receive a travel itinerary two weeks after booking the flight, which is approximately five days before your travel date. You will be provided $15 for transportation to and from the airport only if you do not park there.
If traveling by car:
Please contact the St. Jude Travel Office to book your hotel once you have responded to the travel RSVP request. You will receive a travel itinerary approximately five days before your travel date. You will need to review your travel itinerary and approve the information.
Please note that if travel planning deadlines are not met and/or extra costs for St. Jude may be incurred.
Adviser travel tips
Review and approve your airline travel itinerary. It has your:
- Hotel confirmation number
- Flight arrival and departure information
- Details about ground transportation to and from the airport, to the hotel and to St. Jude
- Contact information for travel assistance
Ground transportation to the airport leaves from the St. Jude Patient Care Center lobby or the hotel. The location will be noted on your travel itinerary.
We now use Uber Business to help our Parent Advisers get to and from St. Jude. This new service will enable you to call for an Uber driver whenever you need it in Memphis, and the ride will be direct billed to St. Jude. No more need for pre-scheduled cabs or shuttles! You will receive an email invite to join. When you schedule your ride, you’ll be able to see the estimated arrival time. At the airport and in the downtown area there are plenty of Uber drivers and arrival times should be quick. Have your ID badge ready when you are being dropped off. As the Uber driver approaches a gate, show your St. Jude ID badge and explain you’re being dropped off. Also, Security has requested that you have your Uber driver drop off and pick up in front of the Patient Care Center. A Security officer must escort Uber on campus and they would like to have that in one central location.
For travel assistance while traveling:
St. Jude Travel Office: 901-595-5000
Office hours are Monday-Thursday, 7 a.m. - 8 p.m. Central Time
If calling outside US/Canada, dial 901-236-0889
After-Hours Emergency Travel Service: 888-387-7315
Your Emergency Assistance Code is S-O0OG
There are many ways you can be a parent adviser at St. Jude. Click the link below to learn more.
All parent advisers are welcome to share their ideas for hospital process or program improvement. To ensure your voice is heard in the appropriate way, please complete this project request form. Please allow the staff in Patient Family Centered Care some time to consider your ideas and determine the best course of action. All ideas will be carefully considered, the appropriate hospital teams will be consulted, and you will be notified of the outcome. In some cases we will not be able to pursue your idea because something similar is already in place, because of timing, or budgetary and resource restrictions.
The Family Advisory Council and the Patient Family-Centered Care staff has developed a glossary for new advisers. We hope the below terms will help you in your new role.
- ACT - After Completion of Therapy
- ACU - Ambulatory Care Unit
- ALSAC - American Lebanese Syrian Associated Charities (the fundraising arm of St. Jude)
- BMC - Biomedical Communications
- BMT - Bone Marrow Transplant Unit
- CCC - Chili's Care Center
- CRA - Clinical Research Associate
- DOR - Day of Remembrance
- DYK - Do You Know… patient education handouts
- EBP - Evidence Based Practice
- FAC - Family Advisory Council
- FCC - Family-Centered Care
- FRC - Family Resource Center
- FS - Food Services
- GEC - Marlo Thomas Center for Global Education and Collaboration
- ICU - Intensive Care Unit
- IRB - Institutional Review Board
- KRCC - Kay Research and Care
- LOA - Leave of Absence
- M/R subcommittee - Membership/Recruitment subcommittee
- MSN - Master of Science, Nursing
- MTC - Marlo Thomas Center
- NP - Nurse Practitioner
- NSS - Nursing Surgical Services
- PCC - Patient Care Center
- PFCC - Patient Family-Centered Care
- PMP - Project Management Plan
- PSEC - Patient Special Events Committee
- QOL - Quality of Life
- QPSC - Quality Patient Safety Council
- RMH - Ronald McDonald House
- RN - Registered Nurse
- SJG - St. Jude Garden
- SPA - Spanish
- TDP - Tri Delta Place
- TH I (or TH 1) - Target House One
- TH II (or TH 2) - Target House Two
One of the most important activities of a St. Jude parent adviser is the ability to tell your story. This can be a story about a short aspect of your child’s care such as:
- A specific event (first trip to Procedures or signing the treatment protocol)
- A timeframe (diagnosis or transition to off-therapy)
- A short overview of your family’s experience throughout treatment
- Your involvement with PFCC
Here are resources to help you best share your story with others:
- A guide for telling your story.
- A guide to helping you develop and share different parts of your family’s treatment journey.
- Creating a draft of your story is an important first step. A template is provided for you.
- Information you will need if you are asked to present or share your story.
- Use this checklist to see how effective you were in sharing your story.