PFCC Awareness Month Re-Cap

Throughout October 2019, as part of Patient Family-Centered Care (PFCC) Awareness Month, St. Jude staff distributed treats and hosted a variety of events and special appreciation activities.

"PFCC Awareness Month is a great time to reflect on our strong culture of Patient and Family-Centered Care,” said Kathryn Berry Carter, director of Family, Guest and Volunteer Services. “It’s a time to further advocate for parent and staff partnerships and collaborations. It’s a time when we can think about how to encourage patient families to provide feedback and perspectives to St. Jude. Finally, it’s a time when we can celebrate our efforts to improve the patient family experience."

"An important focus during the month was to emphasize the importance of our patient-family voices and how their perspective is so incredibly crucial to the care that is provided at St. Jude,” she added.

Parents learned how to contribute their thoughts and opinions through St. Jude Family Voice, our new virtual advisory platform. Staff delivered care kits and treats to both inpatient and outpatient families. Parents also placed thank-you notes in special drop boxes in the clinics and at housing to thank staff who have gone above and beyond through their journeys.

Read on to learn more about PFCC Awareness month activities in this special recap.

St. Jude Voice, a new online virtual advisory community, launched October 1 to coincide with PFCC Awareness month. Efforts to build a culture of patient family-centered care will be greatly enhanced by including more patients and families in the feedback process.

St. Jude Voice will gather the caregiver and patient perspective using survey "activities" written in partnership with St. Jude staff. Caregiver feedback will allow for an expansion of the patient voice in conversations about hospital care and experience. The virtual platforms adapts to the needs of St. Jude caregivers, allowing them to interact on their own schedule at their own pace.

St. Jude Voice includes two separate communities in order to address the unique and diverse needs of our caregivers. One community, Family Voice, supports caregivers of active patients, active alumni and patients in the After Completion of Therapy Clinic. Our other community, Legacy Voice, serves our bereaved families.

Every Monday throughout PFCC month, staff and volunteers hosted St. Jude Voice Recruitment Tables in the Kay Kafe Corner. Parent advisers and staff also hosted another recruitment table at the Day of Remembrance event October 18 and 19.

Many parents, caregivers and staff members expressed interest in St. Jude Voice. As a result of the recruitment tables, more than 150 people left their names and emails to receive sign-up links. We are grateful for the continued interest, feedback and support for St. Jude Voice.

This month, parent advisers hosted two Family Talks, one on the Bone Marrow Transplant Unit and the other outside Kay Kafe, in conjunction with Teen Talk.

"Having Family Talk on the BMT unit allowed our inpatient families to meet and chat with others who've been through similar situations,” said Celeste Welch, a parent adviser. “I enjoyed listening and supporting other families who need a little encouragement."

The Patient Family Advisory Council sponsored a dinner at Tri Delta Place October 3 while simultaneously hosting a St. Jude 101.

"Many families attended to learn about resources available to them, get their questions answered and enjoy a quick bite to eat," said Cindy Howard, parent adviser.

Teenage patients often feel isolated and alone while in the hospital. Special efforts are underway to help connect our young adults with each other. One of these is Teen Talk. October 24, patient advisers and staff offered this event to gather ideas for future teen and young-adult–focused events and allow current patients to speak with former patients who have undergone similar experiences. Family Talk took place nearby to provide our parents with support and a listening ear.

We look forward to hosting another Teen Talk in April.

The Patient Family Advisory Council co-hosted Grand Rounds with Sean Phipps, PhD, chair of Psychology, October 3. The invited speaker was Joanna Breyer, PhD, a renowned psychologist known for her work with children with cancer and their families. After an introduction by PFAC Chair Jennifer Chavez, Breyer shared her experience and observation of parents of children who have medical conditions requiring hospitalization and lengthy treatments.

At the conclusion of the presentation, Chavez facilitated a question-and-answer session with the audience. Afterward, Breyer attended the PFAC meeting for an informal discussion. That afternoon, PFAC members hosted a reception allowing all St. Jude parents to stop by and talk to Breyer as well as pick up a copy of her book, When Your Child Is Sick: A Guide to Navigating the Practical and Emotional Challenges of Caring for a Child Who Is Very Ill.

The annual Breakfast of Champions was celebrated Friday, October 4, in the Kay Kafe Rotunda. The event recognizes staff whose actions and attitude promote and support PFCC culture and who exemplify the core concepts, values and philosophies of PFCC in their daily work.

Both Pat Flynn, MD, deputy clinical director, and Janice English, RN, patient experience officer, spoke at the event and expressed their thanks and appreciation. They applauded the Patient Family Advisory Council for hosting the event, recognized the positive growth of Patient Family-Centered Care, and thanked the honorees for doing a great job supporting and partnering with our families.

To raise staff awareness for PFCC, staff and advisers manned education tables outside the Kay Kafe each day during the week of October 7. Parents and caregivers provide feedback and partner with St. Jude in many ways. These include participation on the Patient Family Advisory Council, Quality of Life Steering Council, serving as St. Jude Voice members, taking part on St. Jude committees and workgroups, providing ad hoc assistance, supporting other parents and caregivers, and providing valuable perspective and education. Staff and advisers distributed written materials and fun give a-ways. The highlight of the week was handing out cake.

Families offered feedback to their care teams during our week-long event, “Petals for PFCC.” On flower-shaped cards at each outpatient clinic desk, families answered one of five questions:

How can your child's care team make everyone feel comfortable during a visit?
What conversation do you wish your care team would have with you and your child?
What do you wish your care team knew about you?
What is a fact about you (or the patient) you want to share with the care team?
What makes you and your child feel engaged with your care team?

The informative responses will be shared with hospital staff to improve the patient experience. Shown below are themes that emerged. The size of the flower represents the volume of response.