Quality of Life Steering Council

Welcome to the Quality of Life Steering Council (QoLSC). We are glad you have decided to join this council. The group includes bereaved parent advisers, the bereavement coordinator, and psychosocial staff members. Your role on this council is invaluable to our team and to St. Jude Children’s Research Hospital.

When you join the QoLSC, an experienced steering council member will be your mentor. That mentor can answer your questions or concerns.

Thank you for your commitment to improve the quality of life for all children who have been diagnosed with life-threatening diseases; their families; and all of those who will care for them along the way.

Lisa Clark, PhD
Bereavement Coordinator/Psychologist, Quality of Life Division


 

The Quality of Life Steering Council is a group of parent advisers who represent the bereaved parent voice and serve as liaisons to St. Jude. The council advises St. Jude Quality of Life and Palliative Care about end-of-life and bereavement care for patients, families, and staff. QoL parent advisers provide insights into strategies for improving care for patients at the end-of-life and for bereaved families, as well as for all St. Jude families.

Training

  1. Be sure to review the Quality of Life Steering Council Manual before your first meeting. If you have questions, email Lisa Clark at lisa.clark@stjude.org.

    Read the Quality of Life Steering Council Training Manual. 
    Quick Reference Guide to Quality of Life

  2. This is a quick overview of your role as a Quality of Life Steering Council member and an overview of other member roles. 

  3. Reviewing our bylaws can help you understand your role and scope as you take part as a council member.

    Quality of Life Bylaws 

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!

  1. Prepare for any meeting by reading these helpful guides!

  2. Need to hop on a Webex meeting? These guides can help you participate to the fullest.       

  3. 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

  4. Some advisers may be asked to join Microsoft Teams. These documents can help you get started.

  5. It’s good to know about all the services and resources available to patients and families at St. Jude. Learn more by reading the guide below.

  6. The St. Jude Grief and Bereavement Support website has links to resources you may find helpful in your own journey and in your efforts to help others.

    Grief and Bereavement Support

Quality of Life Steering Council Subcommittees and Working Groups

  1. Council members can be essential in identifying and recommending potential parent volunteers. All bereaved volunteers must be 2 years past the date of their child’s passing before they can become parent advisers.

    Council members can also increase their impact by joining St. Jude Legacy Voice, the Quality of Life Virtual Advisory Community (VAC). As a Legacy Voice member you can:

    • Present topics from QoL Steering Council meetings that need feedback from the VAC Legacy Workgroup or VAC Steering Council.
    • Summarize feedback from Legacy Voice and report back to the QoL Steering Council.
    • Share bereaved parents’ concerns found on Legacy Voice with the QoL Steering Council.
    • Work with the Coordinator of Bereavement Services to identify and recruit bereaved members from Legacy Voice.
    • Help others join St. Jude Legacy Voice.

    If you would like to nominate a parent for the QoL Steering Council, you want to learn more about Legacy Voice or you would like to join, please email Hannah Crain at hannah.crain@stjude.org.

    Learn about other Parent Adviser Roles

    Learn more about St. Jude Voice

  2. Day of Remembrance (DOR) is an annual event to honor St. Jude patients who have passed away. This event ensures their families have a chance to honor the memories of their children here at the hospital. A committee of bereaved parent volunteers take part in DOR planning meetings. They attend by phone or in person. Committee members also attend the Day of Remembrance event and provide support to families as needed. After the event, advisers take part in meetings to access the event and prepare for next year’s DOR.

    The family panel is a primary feature of DOR. It is a group of bereaved family members who share their St. Jude stories. Committee members can help identify potential speakers, recruit them, and train them for the panel.

    If you are interested in helping plan DOR or volunteering at the event, email Lisa Clark at lisa.clark@stjude.org.

    Learn more about Day of Remembrance

  3. Patient Family-Centered Care recruits, reviews, and trains parents to mentor newly bereaved St. Jude families. QoL Steering Council members may take on mentoring in this formal way or it might happen more naturally as they connect with families. Either way, parent advisers can connect their mentees to the many resources and St. Jude staff members who can help them in their grief journeys. Mentors may also have a chance to identify and train new parent mentors or volunteers. Mentors may be called on to represent bereaved families at events, programs, meetings, or other occasions.

    If you know someone you would like to recommend for the mentor program, please email PFCC@stjude.org.

    If you meet someone who might benefit from a mentor, encourage that person to talk to their social worker.

    Learn more about the Parent Mentor Program

  4. Bereaved parent advisers have important experiences and perspectives to share. Parent educators help others learn from their experiences. Educators meet with St. Jude staff at events like End-of-Life Nursing Education Consortium (ELNEC), Pediatric Palliative Oncology Symposium (PPOS), Fellows Training, and Nursing Orientation. They talk about understanding the parent perspective, approaching difficult conversations, and working with patients on palliative care. In this role, parents can support the larger Quality of Life program by improving everyone’s quality of care through education.

    Learn more about QoL Education Events

  5. There will be chances to represent the QoL Steering Council while working with St. Jude departments on programs that support bereaved families and St. Jude staff. You can help the QoL team and QoL Steering Council by collecting feedback from other bereaved parents and St. Jude staff about the effectiveness of our bereavement support efforts. If you want to share insights you have gained from others, email Lisa Clark at lisa.clark@stjude.org or bring your thoughts to the QoL Steering Council.