A Tale of Two Moms: Family-Centered Care in Pediatric Pulmonary Centers

By Angela MineyAngela Miney
University of Florida

Carla Salldin
University of Washington

Margaret Murphy, a mom and a World Health Organization Patient Safety Champion, whose son Kevin died in 1999 as a result of a series of medical errors, tells the medical community that "you ignore a mother’s instincts at your peril!" Too often, health-care providers have come to appreciate the value of patient and family involvement after a tragic event, but patient and family-centered care need not be built on the bricks of tragedy and grief. The six national Pediatric Pulmonary Centers (PPCs), funded by the Maternal and Child Health Bureau (MCHB), have embraced patient and family involvement at local, institutional, state, regional and national levels. The family partners from the Universities of Florida (UF) and Washington (UW) share their stories.

What is the Family Partner Mission? Carla Salldin

We focus on improving the lives of children and families and improving the systems that support them. As the parents of children with chronic illnesses, we feel uniquely qualified for this work. We believe that most health-care providers want to do the best for their patients. Health care is increasingly complicated because of new technologies, newly acquired knowledge, the definition of best practices, more defined guidelines for care and research findings. Although all of these can lead to improvements in care, the relationships and partnerships between people remain at the heart of patient care.

As family partners, we help patients, families and health-care providers create partnerships in care by teaching:

  1. Provider and family advocacy skills
  2. Best practices in family-centered care
  3. Ways to create effective partnerships
  4. Methods to participate in decision making at the institutional level

Through programs like the PPC, families and the family perspective are improving both the systems of care and the education of future health-care providers. Families also help to shape policy. As family partners, we facilitate this by bringing families "to the table."

What is the Family Partner’s Role?

In the early days of family involvement at UF and UW PPC, we struggled to define a role for family involvement, focusing on "telling our stories." In hearing our stories, the PPCs became aware of the family perspective from someone they knew and trusted. On the one hand, patients and families bring a perspective that questions relationships and asks why a patient and their family should trust "just because someone wears a white coat and slings a stethoscope around their neck." On the other hand, as members of our respective health-care teams, we sometimes scratch our heads and wonder why some of our patients and families do not do what we perceive as being in their best interests. In many cases, deeper understanding and more effective communication are what is lacking.

Partnering with the University of Florida

As a family partner at the UF PPC, I promote partnerships that will engage patients and families at an individual level in their health care. At the institutional and state levels, family involvement allows us to look at healthcare systems through a different lens. Here are some examples of what family involvement at the UF PPC looks like:

  1. I am the director on a study in our outpatient clinics that is looking to enhance communication and understanding between partners in care – the patient, the family and health-care workers
  2. Families are also involved in MCHB core competencies training by "telling their stories" and teaching a variety of University of Florida students in the Colleges of Medicine, Public Health, Nursing, and Food Science and Nutrition
  3. To bring about institutional change, families participate on multiple hospital committees, including the Patient and Family Advisory Board; the Pediatric Ethics Committee; and the Patient and Family- Centered Care Committee
  4. At the state level, we have family representation on the PPC state and regional advisory boards
  5. Family involvement is key on an Interdisciplinary Committee on Health and Education Transition (ICHET), which seeks to bring the worlds of education and health together in an effort to "transition" the individual from child to adulthood

Partnering with the University of Washington

As a family consultant of the UW PPC, I also focus on developing family training partnerships, trainee education, curriculum development and research. Families are ideally at the center of care for all children, other providers are the supports and knowledge that contribute to the child’s team. Training providers to share in the care of the child promotes a positive relationship between families and professionals.

At the UW PPC, we have a "Families as Teachers" program, where families teach PPC trainees and others about the complexity of their child, what works and what does not work in the different settings of the child’s life through their stories. However, providing a story is only the beginning of how family partnerships evolve.

Families in the UW PPC:

  1. Participate as faculty partners
  2. Mentor staff and families
  3. Provide input on didactic and practicum curricular development
  4. Guide and participate in research development and publication

Families As Teachers Program: UW PPC families teach trainees in the family’s home as part of the Families as Teachers program. Trainees experience what families do outside of the clinical setting with their child and family. This helps them begin to think differently about how to support the family. After each home visit, the trainees write a paper from the viewpoint of one of the family members, allowing them to get out of the clinical thought process and into the perspective of the family member. While this is challenging, many report it is also one of the most valuable parts of their training.

Family-Centered Care Tool: The Family Advisory Council at the UW PPC developed a Family-Centered Care (FCC) tool that is designed to record families’ perceptions of family-centered providers and looks at how providers perceive the way they deliver family-centered care.

MCHB – Strategic Planning Work Group: Nationally, the UW PPC Family Consultant participates on the MCHB – Strategic Planning Work Group, shaping the goals and objectives for the 2015-2020 training programs.

The Family Provider Perspective

Don Berwick, administrator at the Center for Medicare and Medicaid Services, reminds us that healthcare providers are "guests in their patients’ lives." If healthcare providers, patients and families regarded themselves as guests in each others’ lives, our interactions would look a little different. The family faculty at all six PPC training sites are partnering with patients, families, professionals and organizations in the care of children. Our goal is to empower others to be advocates at many levels – local, state and national – to improve the lives of all children and youth with special health care needs.