Patient Family-Centered Care Volunteer Opportunities

Parent Mentor Program

Patient family-centered care (PFCC) volunteers may participate in a variety of ways, depending on the amount of time you can offer and your unique experiences related to care at St. Jude. Whether you are available for an afternoon or can commit to a monthly meeting, we have a way for you to join our efforts.

  1. Coffee Talk is a PFCC event where parent advisers on the Family Advisory Council (FAC) meet with other St. Jude parents for coffee and conversation. Coffee Talk is an informal event and open to all St. Jude parents, both inpatient and outpatient. The event is an excellent way for St. Jude parents to build connections, express ideas and concerns, and enjoy the company of other parents. Coffee Talk gives parents an outlet to meet other families, share their experiences, and build special bonds. Events are scheduled regularly.

    Those who wish to serve as a Parent Lead for Coffee Talk must be successfully on-boarded with the PFCC and Volunteer Services departments, trained as a parent adviser, serve on the FAC and receive additional training specific to the role.

  2. Embracing PFCC means we want to hear from you regarding topics such as campus design and construction projects, the safest and best ways to provide quality patient care, family support during treatment, food and nutrition services, and other aspects of patient care. We value your partnership with us in planning and delivering the best care possible.

    The PFCC E-Council is an online advisory group consisting of St. Jude patient families, caregivers and former patients interested in sharing their perspectives about care at St. Jude. Topics and discussions are posted, and E-Council members respond by email to share their perspective and suggestions with staff and other members.

    The online setting is especially helpful for patient family members who would like to be a part of an advisory council, but have time constraints or live outside the Memphis area. Those who wish to serve on the E-Council must be current or former St. Jude patients or family members or caregivers of current or former patients. All members of the E-Council must be at least 18 years of age or older. Applicants should have experience as a patient or have directly cared for a current or former St. Jude patient or family. They must also have access to an electronic device such as a computer, tablet or smart phone to correspond with other E-Council members. Members have flexibility with their hours; however, feedback and responses on topics of discussion are required in a timely manner.

    After successfully completing the application and onboarding process for PFCC and Volunteer Services, further training will be administered according to your specific role. This may be onsite, shadowing, one-on-one or group training, based on your role.

  3. The Family Advisory Council (FAC) is the cornerstone of the St. Jude PFCC program. The FAC consists of at least 18 parents, known as advisers, and five staff members who meet monthly to guide PFCC programming and related adviser roles.

    The FAC works from a strategic plan originated by the advisers and is supportive of the St. Jude strategic plan. The FAC reviews the projects, goals and outcomes of its subcommittees and other working groups to ensure parent involvement in the areas of improved clinical care experience, education, information sharing, transition of care, advancing PFCC culture and facilities-planning. FAC meetings are typically held every nine weeks on a Friday from 11 am–1 pm.

  4. Serving on a St. Jude hospital committee provides a PFCC adviser the opportunity to work alongside St. Jude staff and share the parent perspective in committee projects. Adviser members will be placed in this role based on the varied eligibility requirements of the committee and the related experience of the adviser. The length of time an adviser would spend in this role depends on the membership guidelines of the committee. Examples of current committees include: Quality Patient Safety Council (QPSC), Transition to Off-Treatment workgroup and the Institutional Review Board (IRB).

    After successfully completing the application and onboarding process for PFCC and Volunteer Services, further training will be administered according to your specific role with the PFCC department. This may be onsite, shadowing, one-on-one or group training, based on your role. 

  5. The Family Advisory Council (FAC) patients, families and health care staff work together to create policies, develop programs, implement changes and evaluate their work as it relates to facility design, professional education and delivery of care. The Information Table is an opportunity to meet parents from the FAC–Membership Recruitment Communication Subcommittee to learn more about partnerships in PFCC. We offer free goodies and a chance to sign up to join our growing E-Council.

    After successfully completing the application and onboarding process for PFCC and Volunteer Services, further training will be administered according to your specific role with the PFCC department. This may be onsite, shadowing, one-on-one or group training, based on your role.

  6. Each nursing unit at St. Jude has a council that meets once a month to discuss improvements and developments for patient care. Each nursing unit council (UC) includes parent advisers as members in order to gain the patient family perspective during discussions related to patient care and staff practices on that unit.

    After successfully completing the application and onboarding process for PFCC and Volunteer Services, further training will be administered according to your specific role with the department. This may be onsite, shadowing, one-on-one or group training, based on your role. Though fully onboarded as parent advisers, parent members of the UC do not necessarily have to serve on the Family Advisory Council. Dates and times of council meetings vary by unit. Generally, the UC meets monthly for one to two hours.

  7. Parent leads are responsible for managing respective projects, events and outcomes. Leads will work with the PFCC staff to help with communication and gather logistical information about each project. He or she will provide all pertinent information to fellow advisers regarding projects. In addition, parent leads are responsible for delegating tasks to fellow PFCC advisers on the day of the project and maintain project timelines.

  8. The Parent Mentor Program matches parents of past patients with new families who are walking through the doors of St. Jude for the first time. The program also matches newly bereaved parents with mentors who have also lost children.

    Mentors provide support, encouragement and insight to help families navigate their journey through treatment. They draw on their own experiences to provide a special connection for those trying to become accustomed to a new way of life in the hospital or at home.

    Mentors are parents of a patient who is at least one year off treatment. Mentors guide newly diagnosed families, families who are new to St. Jude, or families who are switching clinics. Mentors are matched with mentees for at least 12 weeks.

    Quality of Life (QoL) mentors are parents who have lost a child two years before becoming a mentor. They guide parents of patients on the QoL service facing end or parents of children who have died. Mentors are matched with mentees for at least 15 months.

    Mentors in the H Clinic are parents of a patient with a hematological disease. They will be matched with parents of children with similar diagnoses. H Clinic mentors are matched with mentees for at least 15 months.

    The process to become a parent mentor is extensive and includes the successful completion of the PFCC application, a phone interview and a day-long in-person training session at St. Jude. Potential mentors must be willing to commit a sufficient amount of time to successfully complete the onboarding and training. Mentors can expect to put in approximately one to five hours a month communicating with their mentees, managing encounters and monitoring their St. Jude emails. Mentors are not expected to be on campus any other time except for training. There is an annual meeting each fall that mentors are strongly encouraged to attend, but it is not mandatory.

  9. Parents from the St. Jude Family Advisory Council (FAC) like to help other parents make the most of their St. Jude journey. The council created St. Jude 101, a parent-to-parent welcome program for the newest St. Jude families. It is also for parents and caregivers who want to learn more about support and services offered at St. Jude.

    During St. Jude 101, parents from the FAC share personal stories and provide information caregivers need to help them feel more comfortable at the hospital. Caregivers can ask questions and learn from other parents in an informal setting.

    St. Jude 101 sessions will be held in the inpatient and outpatient areas. Look for dates and locations on posters and electronic boards around the hospital. Caregivers can ask their social worker about St. Jude 101 or call Patient Family-Centered Care at 901-595-6041.

    Drinks and snacks will be served, and Helping Hands volunteers can provide child care activities as needed. There is no need to register. Caregivers can arrive and stay for as long as their schedule allows.

    Topics covered include: Who is managing my child’s care; hospital services, campus highlights and support; keeping your child safe; patient and family-centered care; and managing concerns. The content is valuable for any St. Jude parent or caregiver at any stage of treatment. Parents leading the discussion will not cover medical information or talk specifically about a child’s diagnosis.

Education Opportunities for Parent Advisers

  1. End of Life Nursing Education Consortium (ELNEC) is a national education initiative to improve nursing care through specialized training in pediatric palliative care.

    The Division of Quality of Life and Palliative Care offers several courses to educate nurses on high quality nursing practices. This interactive course focuses on both palliative and end-of-life care in the pediatric population. Content covered during this training includes difficult conversations, ethical and cultural considerations in end-of-life care, as well as bereavement and self-care. Parent educators will go over case studies with nurses, facilitate discussion and help educate nurses on how to better serve patients. Parent educators also serve on the parent panel, a very powerful program dedicated to allowing parents to share their stories and answer questions from participants.

    Parent educators for ELNEC are bereaved parents who have a desire to improve end-of-life and bereavement care for patients and families by sharing their personal experiences with staff. Educators must complete the standard PFCC Parent Adviser training. ELNEC occurs twice a year and is two days in length. Parents are only involved in the second day of the course.

  2. Each year St. Jude hosts the Pediatric Palliative Oncology Symposium. This international symposium has attendants from all disciplines, across numerous institutions from around the world. It is a two-day event with various opportunities for parents to participate in seminars, parent panels and breakout sessions for difficult conversations. 

  3. The Quality of Life for Children Suffering from Serious Illness seminar is open to those in nursing and other disciplines. Participants will gain the knowledge and skills to integrate high-quality palliative and end-of-life care into their clinical practice. The role of parent educators for the Quality of Life Seminar includes facilitating small group discussions between participants during breakout sessions. Parent educators will go over case studies with participants, facilitate discussion and help educate participants on how to better serve patients. Parent educators also serve on the parent panel, share their stories and answer questions from participants.

    Parent educators for the Quality of Life Seminar are bereaved parents who have a desire to improve end-of-life and bereavement care for patients and families by sharing their personal experiences with staff. Educators must complete the standard PFCC Parent Adviser training. The Quality of Life Seminar occurs once a year and is one day in length. 

Quality of Life Parent Adviser Opportunities

  1. The Day of Remembrance weekend at St. Jude is a time for bereaved families to come back and honor the memories of their children. It’s also a time to renew, strengthen and acknowledge their connections with St. Jude staff and families and create new connections.

    The Parent Panel allows bereaved parents to share their grief journey with other parents in attendance through responding to questions that cover a series of grief-related topics. In addition to participating on the panel, these parents serve as hosts and ambassadors for St. Jude during the Day of Remembrance weekend. Parent panelists have the unique opportunity to arrive early in Memphis on the Thursday prior and attend a dinner provided by St. Jude. This dinner allows parent panelists to get to know one another before the start of the weekend’s events, as well as interact with staff and enjoy each other’s company.

    Day of Remembrance parent panelists are typically Quality of Life Parent Mentors. They have been identified by St. Jude staff as having reached a point in their grief journey where they are able to speak openly about their experience with loss. Sharing their experience in such a way allows other bereaved parents to gain insight and comfort as they continue their own journey with grief. Training for the parent panelists begins roughly 20 weeks in advance and consists of a series of email exchanges with the other parent panelists.

    Every two weeks, each panelist journals their personal experience with a different grief-related topic. Parent panelists must be willing to journal and respond by email every two weeks through nine topics related to grief. They must also be willing to share their responses with the other parent panelists, the parent trainer and appropriate St. Jude staff. Parent panelists must also be able to arrive on the Thursday before the start of the event and stay for the duration of the Day of Remembrance weekend.

  2. The Quality of Life Steering Council shares the mission of the Family Advisory Council. The Quality of Life Steering Council fosters a mutually beneficial partnership between patients, families and health care providers. It aims to create the highest level of care for St. Jude patients and families, with an emphasis on end-of-life and bereavement services.

    Members of the Quality of Life Steering Council include St. Jude bereaved parents and staff. The Division of Quality of Life and the Departments of Social Work, Child Life, Spiritual Care and Psychology each have staff representatives on the Council. Bereaved parents who serve on the Council are at least two years removed from the death of their child and have been trained as Parent Advisers.

    Parent Advisers who serve on the Council play an essential role in providing insight into strategies for improving care for patients at the end-of-life and for bereaved families, as well as for all St. Jude families.

    Some examples of the Council’s activities include helping plan the Day of Remembrance, participating in nursing education trainings, participating in the development of a St. Jude bereavement webpage and working with ALSAC to improve their quality of communication with recently bereaved parents.

    Requirements:

    • Complete Parent Adviser training and interviews with St. Jude PFCC and bereavement staff
    • Complete Parent Mentor training
    • Attend six steering council meetings per year (in person or via phone). Each meeting lasts one day.
    • Prepare for meetings by reading required materials
    • Participate on a subcommittee of the steering council
    • Respond to St. Jude emails on a weekly basis 
    • Serve as a parent educator by participating in staff educational events as needed. These typically occur the day prior to the Quality of Life Steering Council meetings. Training and support for educational events is provided.