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.

Volunteer Opportunities

Parent to Parent Opportunities

  1. The Information Table is an opportunity to meet parents from the PFAC–Membership Recruitment Communication Subcommittee to learn more about partnerships in PFCC. The Patient Family Advisory Council (PFAC) and PFCC believes patients, families and health care staff should 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 event offers free goodies, information about PFCC and a chance to sign up to join our Virtual Advisory Council.

    If you would like to volunteer at an information table, you must be accepted to the PFCC adviser program, train as an adviser and complete training specific to the information table.

    If you would like to attend an Information Table, listen for overhead announcements alerting you that the event is taking place.

    If you are interested in volunteering for the Information Table or would like to know when the next Information Table will be, email PFCC@stjude.org.

  2. Family Talk is a PFCC event where parent advisers on the Patient Family Advisory Council (PFAC) meet with other St. Jude parents for coffee and conversation. Family 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. Family Talk gives parents an outlet to meet other families, share their experiences, and build special bonds. Events are scheduled regularly.

    To volunteer at Family talk, you must be accepted to the PFCC adviser program, train as an adviser and complete training specific to Family Talk. 

    Family Talk is a time for St. Jude caregivers to talk to advisers whose family has experienced their own journey at St. Jude. Casual conversation between current caregivers and advisers lets families new to St. Jude ask questions, discuss their needs, and hear from someone who understands their perspective.

    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.

    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 email Patient Family-Centered Care at PFCC@stjude.org .

    If you are interested in volunteering for Family Talk or would like to know when the next Family Talk will be, email PFCC@stjude.org.

  3. To volunteer at Family talk, you must be accepted to the PFCC adviser program, train as an adviser and complete training specific to St. Jude 101.

    Advisers like to help other caregivers 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, advisers share personal stories and provide informational resources about the services offered at the hospital. Caregivers can ask questions, receive information to help the access services, and learn from other parents in an informal setting.

    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.

    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 email Patient Family-Centered Care at PFCC@stjude.org.

    If you are interested in volunteering for St. Jude 101 or would like to know when the next event will be, email PFCC@stjude.org.

  4. 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 facing end of life 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.

    If you are interested in learning more about the mentoring program, please email us at PFCC@stjude.org.

     
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    St. Jude Parent Mentor Video

    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.

Parent to Staff Opportunities

  1. 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. Training may be onsite and involve shadowing or one-on-one or group training based on your role. Participation in some committees may require onsite participation while others may have options to join over phone or web.

    Be sure to check the PFCC Alert, our newsletter, for volunteer opportunities like this one.

  2. Each division of nursing at St. Jude has a council that meets once a month to discuss improvements and developments for patient care. These nursing councils include parent advisers as members in order to gain the patient family perspective during discussions related to patient care and staff practices on that unit.

    To become an adviser on a nursing council, you must successfully complete the application and onboarding process to become a parent adviser and further training will be administered according to your specific role. Though you must be fully onboarded as an adviser to serve on a nursing council, you do not necessarily have to be a PFAC member or serve on other PFCC councils. Dates and times of council meetings vary by council. Generally, councils meet monthly for one to two hours.

  3. 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.

  4. The Patient Family Advisory Council (PFAC) is the cornerstone of the St. Jude PFCC program. The PFAC 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 PFAC works from a strategic plan originated by the advisers and is supportive of the St. Jude strategic plan. The PFAC 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. PFAC meetings are typically held every nine weeks on a Thursday and Friday.

    If you are interested in joining the PFAC, you must complete the application and onboarding process all advisers go through. The openings and needs of the PFAC are evaluated before extending advisers an offer to join as there are limited positions available.

    If you are interested in learning more about the PFAC, please email us at PFCC@stjude.org.

  5. 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.

  6. 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.
  7. Any parent or caregiver of a St. Jude patient is eligible to join St. Jude Voice, our Virtual Adviser Community. You can participate anytime, anywhere, from any device with internet access. Advisers on St. Jude voice provide feedback directly to St. Jude staff through taking surveys and participating in forums. St. Jude Voice is also a way to stay connected to what is happening at St. Jude by reading our latest posts.

    Learn more or join St. Jude Voice. 

Events

  1. 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. 

  2. 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. 

  3. 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.