We rely on our Pediatric Family Advisory Council (PFAC) to do many things. We ask participants to identify issues, advise on what needs to change, champion best practices, support families who are hospitalized, represent the family voice and educate those who work here at the Children’s Center. It’s a big job, and we could not do it without them. Our PFAC holds us accountable and is firmly invested in making sure we are living up to our mission.
One of the most important roles of the PFAC is to educate: to focus on helping students and new staff members understand what it is like to have a child in their care and what patient- and family-centered care means to our families. Earlier in the year, two PFAC advisors, Jane Webster and Lisa Jones, were invited to attend the first and last classes of the Professionalism in Nursing course at the Johns Hopkins University School of Nursing, taught by faculty members Rebecca Wright and Angela Capello. In the first class, Jane and Lisa introduced the core concepts of patient- and family-centered care, which are dignity and respect, information sharing, participation and collaboration. These concepts were crafted by the Institute for Patient- and Family-Centered Care and were adopted by Johns Hopkins Children’s Center.
By highlighting these core concepts through their storytelling, Jane and Lisa were able to help nursing students better understand the patient and family experience. “My hope,” Lisa told me afterward, “is that the stories Jane and I shared will resonate with them throughout their careers in health care and empower them to be gentle, compassionate and, most importantly, loving and caring beings when dealing with each and every family they encounter. We reminded them that families do remember them and their treatment and care — both good and bad — of the entire family. Nurses truly are the constant in the chaos for the families.” During the final class, Jane and Lisa helped the professors evaluate the students’ use of patient- and family-centered care concepts in their final group projects.
The PFAC also educates at the bedside. PFAC members have worked with medical students and resident teams to help trainees refine best practices during Family-Centered Rounds. Before they hit the wards, medical students are given the opportunity to role-play, presenting patient information and the care plan with a PFAC member. This gives future doctors a safe place to practice and obtain real-time feedback. Likewise, members of the council audit resident teams during rounds, assessing simple things, like making sure the team introduces themselves, to more complex interactions, such as engaging with families and understanding their needs. Through this important component of medical training, the patient and family voice is amplified.
Including the parent and patient voice is a fundamental piece of clinician education; it is essential to patient care and to building resiliency among our students and employees. We remind them of why they got into health care in the first place — and how impactful their role can be for patients, families and their overall Johns Hopkins experience.
Sue Mead is a parent adviser on the staff of Johns Hopkins Children’s Center and co-chair of the Pediatric Family Advisory Council. Her daughter was successfully treated for a brain tumor at Johns Hopkins in 2006.