We are grateful you are joining our volunteer team. As a bereaved caregiver of a St. Jude patient, you have important knowledge to share with St. Jude staff and other bereaved families.
Thank you for your commitment to improving the quality of life for all children who have been diagnosed with life-threatening diseases; their families; and all those who care for them along the way.
Theodore Roosevelt once said, “The more you know about the past, the better prepared you are for the future.”
Understanding our past will help you prepare for your new role as a parent adviser.
In 2010, the Patient Family Advisory Council (PFAC) launched a subcommittee of 13 bereaved parents and 2 St. Jude doctors. They held a series of focus groups over 4 months to better understand the needs of St. Jude bereaved parents. Their findings were used to create a palliative care strategic plan. Palliative care is specialized care for people living with serious illnesses. The subcommittee made 8 recommendations to improve palliative and end-of-life care at St. Jude.
In 2011, the subcommittee presented these ideas to top St. Jude leaders, and they were well received. This started a culture shift within the hospital for palliative and end-of-life care.
In 2012, the first St. Jude bereavement coordinator was hired and the Quality of Life Steering Council was formed.
Since then, St. Jude has expanded the volunteer roles for bereaved parents to better support the needs of St. Jude families. Today, bereaved parents actively serve as parent educators, parent mentors, and committee members.
With the help of bereaved parents, Quality of Life was able to create 8 recommendations to improve the quality of palliative and end-of-life care. These recommendations, along with the St. Jude Strategic Plan, drive everything we do. They also help parents and staff stay focused while creating annual goals for each volunteer role.
Please Visit the Training Pages for the Role You’ve Been Assigned
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.
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.
The Stay in Touch program is a parent adviser position that supports newly bereaved families. Advisers make monthly contact by phone, text, and email to offer condolences, check on the parent’s current needs, and share information about St. Jude resources for bereaved families. The training for this volunteer position is provided here.
The Quality of Life Parent Mentor program matches bereaved parent mentors with parents of patients facing end of life or parents of children who have died. 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.