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.
History
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, Parent Mentor Steering Council and the Virtual Advisory 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.
Mission
The Patient Family-Centered Care program intends to advance family-centered care culture throughout the institution and assures that patient-family populations at St. Jude are well represented when sharing experiences and perspectives. All programs within PFCC aim to encompass the core values of dignity and respect, information sharing, involvement, and collaboration.
Vision
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.
Values
We believe:
- 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.
Resources For You as an Adviser
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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.
Paid in advance
by St. JudePaid out of pocket
but a reimbursable expenseNot a covered
expenseAirline 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.
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Please book airline travel and hotel with the St. Jude Travel Office three weeks prior to event, but no later than 14 days before travel event. They can be reached at 901.595.5000.
Please note that if travel planning deadlines are not met extra costs for St. Jude may be incurred.
If traveling by plane:
Please book airline travel and hotel with the St. Jude Travel Office three weeks prior to event, but no later than 14 days before travel event. You will receive a travel itinerary after booking the flight. You will need to review your travel itinerary and approve the information.
We use Uber Business to help our Parent Advisers get to and from St. Jude. This awesome 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! 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. Your name will be checked against a visitor registration list that has been submitted before you are granted access to campus. Please allow extra time to get through this process. A Security office must escort Uber on campus.
(If you are interested in using the St. Jude Uber account let us know. You will receive an email invite to join!)
If you are using Uber, at the security gate your name will be checked against a visitor registration list that has been submitted before you are granted access to campus. Please allow extra time to get through this process.
If traveling by car
When trips longer than 250 miles one way are contemplated, the most economical and time saving method of transportation may not be the use of an automobile. In such cases, it is expected that you consider air travel. Should you receive approval to travel by automobile or rail for personal convenience, you will be reimbursed the lesser of mileage/rail costs plus parking or the 14-day advance airfare costs plus ground transportation and baggage fees.
Please contact the St. Jude Travel Office to book hotel reservations. You will receive a travel itinerary. You will need to review your travel itinerary and approve the information.
If you do not have a SJ parking hangtag, at the security gate your name will be checked against a visitor registration list that has been submitted before you are granted access to campus. Please allow extra time to get through this process.
Adviser travel tips
Review and approve your airline travel itinerary. It has your:
- Hotel confirmation number
- Flight arrival and departure information
- Contact information for travel assistance
For travel assistance while traveling
St. Jude Travel Office: 901.595.5000
Office hours are Mon-Thurs 7am-8pm 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
Travel expenses reimbursement
You may have expenses which St. Jude is able to reimburse. Some expenses are paid in advance by the St. Jude and some are initially paid by you and then reimbursed. Examples: parking, transportation if Uber is not available, baggage fees. Receipts are required for all items greater than $30 (except meal per diems and mileage).
Reimbursement for use of a personal vehicle will be reimbursed $15.00 for each round trip to/from the airport when airport parking is not also reimbursed.
Automobile mileage is reimbursed at a rate per mile that conforms to current IRS rulings for necessary business travel. The amount reimbursed for auto mileage is based on the direct mileage from the point of origin to the destination and vice versa.
You will be reimbursed for personal meal expenses at a rate consistent with U.S. General Services Administration (GSA) Domestic Per Diem. The meal reimbursement for first and last travel days will be made at 75% of the per diem, consistent with the GSA. If a meal(s) is provided, the per diem will be reduced for the meal(s) provided.
Under normal circumstances, properly completed Travel Authorization and Travel Expense Report forms completed in the system by 5:00 pm on Thursday and being reimbursed by Direct Deposit will be paid the following week. So be sure to send in your expense information quickly so that we can get you reimbursed!
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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
Resources
Below are resources to help you prepare for your adviser role. You may only need to use some of these resources to participate in your adviser role. If you are not sure which resources your need or have questions about the resources, don’t hesitate to reach out to us at PFCC@stjude.org!
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Prepare for any meeting by reading these helpful guides!
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Need to hop on a Webex meeting? These guides can help you participate to the fullest.
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Check out these documents if you are logging into your St. Jude email for the first time or need some help with your password. You can also call the St. Jude helpdesk at (901) 595-2000
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Some advisers may be asked to join Microsoft Teams. These documents can help you get started.