Patient Family-Centered Care
Program

At the heart of patient family-centered care (PFCC) is the belief that health care staff and the family are partners, working together to best meet the needs of the child. Excellence in health care happens when we work together and honor the expertise each of us brings to every health encounter. PFCC is a continual effort to be responsive to the needs and choices of each family.

The core concepts of PFCC are:

  • Dignity and Respect - To listen to and honor patient and family ideas and choices and to use patient and family knowledge, values, beliefs and cultural backgrounds to improve care planning and delivery.
  • Information Sharing - To communicate and share complete and unbiased information with patients and families in useful ways. Patients and families receive timely, complete and accurate details so they can take part in care and decision making.
  • Involvement - To encourage and support patients and families in care and decision making at the level they choose.
  • Collaboration - To invite patients and family members to work together with health care staff to develop and evaluate policies and programs.

The core concepts of PFCC place value on:

  • Recognizing that each child and each family is unique. Families have different personalities, life experiences, values, beliefs, education, and religious and cultural backgrounds. Care provided to all patients should be equal and flexible so that the needs and choices of families can be met.
  • Open honest communication between patients, their families, and health care staff. Being willing to talk about the bad as well as the good is important for changing, improving, and developing best care practices and policies. This kind of clear communication enhances the patient’s and family’s health care experience.
  • Empowering of families to join in their child’s health care journey. When families and patients understand their options, they are empowered to be involved in their child’s care.
  • Acknowledging that families are allies for quality and safety within the health care system. By working together, families and staff are strengthened by their partnership and shared knowledge. This results in the highest quality of care.

The PFCC program operates under a strategic plan focused on partnership with St. Jude staff and leaders, to reach the following goals:

  • Serve as an organized and effective resource to the institution by providing the structure for parent advisers to contribute to broad discussions and work groups that directly impact patients and families. Advance PFCC culture and engagement throughout the institution with the goal of improving the patient and family experience, documenting and expressing impact.  
  • Recruit adequate number of diverse parent advisers to meet institutional need.  
  • Ensure all parent advisers feel supported and are trained to be successful in their roles. Prepare staff partners to receive and engage parent advisers effectively.  
  • Support institutional efforts to improve patient satisfaction, safety, quality and communication specific to performance and improvement in the delivery of patient care, adding positively to the patient and family experience.  
  • Share our knowledge and expertise with the global community to advance the profession and field.

2017 PFCC Volunteer Achievements

  • Contributed 3,065 volunteer hours
    • Offered the parent perspective regarding pain management and Sickle Cell Disease
    • Shared their personal stories with staff as a part of Psychology Rounds
    • Participated in a panel discussion during the second annual Patient Care Services Research Symposium
    • Educated staff about the needs of families for support related to the following topics:
      • Patient care emergencies
      • Nursing bedside reporting
      • Patient safety
      • Inpatient discharge experience
      • Unexpected waiting for appointments
      • Enhancements to My StJude patient portal
      • On-therapy to off-therapy transition
    • Offered input for new patient education materials, the new Family Commons design and the patient app
    • Offered insight to the day to day non-clinical needs of patient families and partnered to share the mock Town Square design for input by other St. Jude families
    • Shared parent perspective with the Psychology Department, School Program and Child Life department in assistance with new programming
    • Shared examples of parent partnership in research, to support a successful reaccreditation related to St. Jude upholding rigorous standards of ethics, quality and protection for participants in research studies
    • Offered suggestions for patient and family implementation of a new evidence-based practice standard related to oral care and cryotherapy
    • Suggested ideas from a parent’s perspective, for meeting patient satisfaction survey goals
    • Served as members or leaders on the following hospital committees, councils & workgroups
      • Nursing Unit Councils
      • Quality Patient Safety Council
      • Grievance Committee
      • Transition of Care
      • Quality of Life Steering Council
      • Day of Remembrance Planning Committee
      • Parent Mentor Program Steering Council
    • Broadened the reach of the PFCC E-Council, an online advisory group for St. Jude families, by offering more opportunities for input and increasing membership to over 250 members
    • Advisors on the E-Council contributed to numerous discussions including:
      • Policies on whether or not food should be allowed in the waiting areas
      • Potential names for the new patient app
      • Changing the name of the Med Room
      • New locations for suggestion boxes
      • Room Service policies
      • Patient experience during Diagnostic Imaging
    • Designed the curriculum for St. Jude 101, a program that gives new parents the opportunity to meet experienced St. Jude parents and to learn more about services and support available to them
    • Hosted 3 Coffee Talks within inpatient units, outpatient units and the housing facilities to support parents in sharing with other parents in an informal setting
      • 20 Parent advisors connected with 40 parents
      • Provided support and answered questions about the hospital
      • Held at numerous locations in the hospital and at housing to reach a broad audience
      • Promoted PFCC to all who visited the tables
    • Coordinated hospital-wide recognition for patient family-centered care month, celebrating the organization’s commitment to family partnership
    • Hosted the bi-annual Breakfast of Champions to recognize St. Jude staff members who exemplify the concepts of PFCC in their area of work and beyond
    • Parent advisors served alongside the institutional Facilities Design and Construction Department, influencing the redesign of the Chili’s Care Center lobby
    • Co-sponsored Planetree International speaker Alan Manning to share reflections as a parent and as an expert in best patient family-centered care practice
    • Sponsored a parent to parent social during the St. Jude Teen Formal
    • Piloted expansion of the program to the Hematology Clinic (H Clinic)
    • Trained 18 new mentors: 6 for H Clinic, 8 for Quality of Life (QoL) and 4 for PAIR
    • Connected 23 PAIR mentors with 97 new patient parents for a total of 815 encounters
    • Connected 26 QoL parent mentors with 30 parent mentees utilizing Quality of Life services, for 369 encounters
    • Connected 4 H Clinic parents with 4 parents with children in H Clinic for a total of 17 encounters
    • Made significant improvements towards the implementation of Day of Remembrance to enhance and improve parent engagement
    • Participated as parent educators in numerous ways including
      • End-of-Life Nursing Education Consortium (ELNEC)
      • QOL Seminars
      • Pediatric Palliative Oncology Symposium (PPOS)
      • Fellows Communication Training
      • Schwartz Center Rounds
      • Presentations at national conferences
    • Advised national cancer website "Together" developers on appropriate content for patients and families at end-of-life and in bereavement
    • Worked with ALSAC to reconfigure their mailing programs to bereaved families and to develop ways to honor bereaved patient families in fundraising events, starting with the St. Jude Half Marathon