Quality of Life Steering Council Member
10/2015, 5/2016, reviewed/updated 3/13/19
Serves as a Patient Family-Centered Care bereaved parent adviser, representative, and liaison for the QoL Steering Council. The Council is comprised of bereaved parents, a staff representative from each of the psychosocial departments, Quality of Life division leadership, bereavement coordinator, and several at-large members. The Council’s function is to advise QoL/Palliative Care and the institution regarding end-of-life and bereavement care for patients, families, and staff. 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.
- The steering council meets approximately 6 times a year for day-long, Friday meetings from 8:30 am – 3:30 pm
- Council members can expect to spend approximately 10 additional hours per month checking email, progressing projects, and communicating with QoL. The number of hours will vary based on participation in additional activities.
- Parent or caregiver of a deceased child who has been a patient at St. Jude Children’s Research Hospital
- At least 2 years from the anniversary of the child’s death
- Successfully completed application and onboarding with PFCC
- Commitment of 2 years of service at the discretion of the Patient Family-Centered Care director, QoL division leadership and the bereavement coordinator
- Previous leadership or volunteer experience is helpful
- Basic understanding and access to email, text, and a cellphone.
- Successful application and onboarding through PFCC
- Complete Parent Adviser training and interviews with St. Jude PFCC, QoL division leadership, and bereavement coordinator
- Complete Parent Mentor training
- Complete annual PFCC and volunteer training
- Independent work initiative
- Exceptional verbal, written, and interpersonal skills necessary for program/project development and implementation as well as parent and staff education
- Ability to relate to and work with people of diverse age and demographic background
- Collaborate effectively and respectfully with a multi-disciplinary team
- Understanding of the concepts of Patient Family-Centered Care
- Skilled in organization, problem-solving, negotiation, active listening, empathy, and compassion
- Engages and participates with the Council in a team style
- Flexible and adaptable in unique and challenging situations
- Advise the institution (from a patient and family-centered care point of view) on issues related to end-of-life, grief, bereavement support, care, and education for families and staff.
- Understands, respects, and protects the confidentiality of patients, families, and employees
- Serves as a QoL parent educator (see position description for Quality of Life Parent Educator)
- Participates on a subcommittee of the Steering Council
- Attend 6 Steering Council meetings per year (in person or via phone).
- Participates in Council meetings according to PFCC bylaws
- Responds to St. Jude emails on a weekly basis and comes prepared to meetings.
- Potentially participates on additional committees or steering councils such as the Day of Remembrance Planning Committee, Parent Mentor Program Steering Council, and St. Jude Voice-Legacy Steering Council
- Participates in annual self-review of attendance and participation