Children's Specialized Hospital is the largest pediatric rehabilitation health system in the United States. In 2013, the hospital treated over 22,000 children with a wide variety of medical, developmental, educational, and rehabilitative needs. The hospital has 12 locations throughout New Jersey, and provides inpatient and outpatient rehabilitation and therapies, medical day care, and pediatric long-term care to children from birth to 21 years old.

Children's Country Home was established in 1891 in Mountainside, NJ, and officially became Children's Specialized Hospital in 1962. In 1999, Children's Specialized Hospital became an affiliate member of the Robert Wood Johnson Health System. This affiliation led to the hospital's largest expansion in 2007, making it one of three buildings in the first pediatric medical campus in New Jersey. A newly built PSE&G Children's Specialized Hospital joined The Bristol Myers Squibb Children's Hospital at Robert Wood Johnson University Hospital and the Child Health Institute of New Jersey at Rutgers Robert Wood Johnson Medical School in New Brunswick, NJ, combining pediatric rehabilitation, acute care and research on one campus.

Patient-and Family-Centered Care Journey

In 2004, the VP of Business and Program Development, Director of Recreational Therapy & Child Life, and three other employees attended a one-week intensive training seminar hosted by the Institute for Patient- and Family-Centered Care. Their goal was to develop an action plan to include families as meaningful partners in all aspects of the organization. This was essential to fulfill the hospital's mission "to be the preeminent provider of specialized health care services for infants, children and young adults."

This seminar, combined with surveys of current families and research on best practices in hospitals that were leaders in family-centered care, resulted in the creation of five Family-Centered Care priorities in 2005: hire families, involve families in hospital orientation, involve families in reviewing all policies and procedures, include families on key hospital committees, and develop a Family Advisory Council. In one year the hospital met these goals and established the first dedicated Patient- and Family- Centered Care team led by Donna Provenzano, the first Director of Family-Centered Care as well as establishing the Family Advisory Council and the Family Faculty staff positions. This team provides the focus and unique family perspective required to build awareness, educate, engage, and fully integrate Patient-and Family-Centered Care principles into the health care policies and practices across the hospital.

Family Faculty

Family Faculty staff—parents and family members whose children have received or are still receiving services at Children's Specialized Hospital Inpatient, Outpatient, or Long Term Care sites—are per diem employees. Their own day-to-day experiences provide a unique perspective, understanding, and empathy for families going through similar situations. Family Faculty partner with staff and families to build a respectful and understanding relationship by listening, providing insights, and encouraging positive communication between staff and families. Family Faculty are highly valued as participants and advisors across all hospital committees. The cadre of Family Faculty has grown from two employees in 2007 to13 employees in 2014. The work of the Family Faculty increased from 4 to 179 combined hours per week. Examples of Family Faculty work include:

  • Hospital Committee Involvement. Family Faculty serve on many teams and committees. Examples include: Quality Board Committee, Executive Medical Committee, Operation Excellence Management Pillar Teams, Performance Improvement Committee, Clinical Operations, and Patient Safety, Rights and Ethics.
  • Family Educator. Family Faculty help to educate and provide meaningful information to patients and families by coordinating a bi-monthly email blast to over 10,000 families, as well as helping to educate staff members. They also organize and maintain the Family Resource Centers, and coordinate Family-to-Family Bulletin boards and Hospital Monitors. They develop the educational curriculum and teach staff across numerous Patient- and Family-Centered Care topics such as Sensitivity Awareness, Customer Service, Effective Communication, and Successful First Impressions.
  • Employee Customer Service Training. Family Faculty co-facilitate with the Education staff to provide employees on-going customer service training, providing a family perspective to ensure staff understands how their interactions, no matter how brief, effect families. Family Faculty also developed educational sessions and materials for training clinical staff, such as: Sensitivity Awareness and the Essential Ingredient and Partnering with Your Families and Patients: Effective Communication to Nurture Positive Relationships and Outcomes.
  • Family Advocates. Since 2006, Children's Specialized Hospital has included Family Faculty and their children as partners and advocates for Children's Specialized Hospital at the state and federal level. For example, Children's Hospital Association sponsors an opportunity for children and families to tell their stories to members of Congress on Capitol Hill.
  • New Employee Hospital Orientation. Family Faculty provide an overview of Patient- and Family-Centered Care and share stories about how Patient- and Family- Centered Care has lasting and positive affects on the families served.
  • Community Outreach. Family Faculty serve on the New Jersey State Special Education and Traumatic Brain Injury Task Force, New Jersey Brain Injury Association Teen and Adolescent Committee, Safe Kids, and Children's Home Society of New Jersey.
  • Website Development. Family Faculty teamed with the Marketing Department to develop the Children's Specialized Hospital website. They provide on-going enhancements to ensure that the website meets the families needs.
  • Family and Staff Mentor. Family Faculty "walk the talk" serving as role models on how to build positive and productive relationships for staff and families.
  • Family Advisory Council. Family Faculty participate in the interviewing and selection of Family Advisory Council members.
  • Family Support. Family Faculty provide families emotional support through personal visits, conversation, and empathetic listening, assisting families in acquiring resources or making the necessary contacts to advocate for their child.
  • Family Event. Family Faculty actively support and assist in ongoing family and child events such as Friday Night Fever for teenagers, National Family Caregiver Month, Spring Prom, Family Photo Day, and the Annual Walk and Roll.
  • Conference Presenters. Staff and Family Faculty present at national and international conferences on a variety of topics.

Family Advisory Council

The Family Advisory Council has 25 members and is led by the Director of Family-Centered Care. The council is comprised of family members and staff at a 3:1 ratio. Family members receive a stipend. Members serve approximately a three-year term and are interviewed by the Director of Family-Centered Care and Family Faculty prior to joining the Council. The Family Advisory Council meets monthly to discuss progress towards annual goals and new areas where the Council can be of assistance. The Council collaborates with senior leadership and staff to establish annual goals that support the organization's mission and promote Patient-and Family-Centered Care.

Family Faculty and Family Advisory Council Resources

Family Faculty and the Family Advisory Council, in partnership with staff, reviewed and developed many meaningful patient and family resources. Examples include:

Patient- and Family-Centered Care Commitment and Recognition

Patient- and Family-Centered Care is enthusiastically and widely embraced across the organization due to the President/CEO and Senior Leadership Team commitment and support. In 2013, this commitment was demonstrated through the development of a stand alone Patient- and Family-Centered Care Strategic Plan. This was a collaborative effort that involved the newly formed Patient- and Family-Centered Care Leadership team comprised of representatives from the Family Faculty, Clinical and Non-Clinical staff, and Senior Leadership.

As a part of the review process, the Patient- and Family-Centered Leadership team included Family Faculty and the Family Advisory Council. As a result of all input, the team defined four key Patient- and Family-Centered Care Strategic Priority Areas: Service Excellence, Flow, Environment, and Branding/Marketing.

The team then developed Operation Excellence initiatives, with Action Plan Components for each Strategic Priority Area and concise strategies for implementing the plan over the next three years.

In June 2013, the Director of Family-Centered Care presented the Strategic Plan to the President/CEO and Senior Leadership Team for approval. Once approved, the Patient- and Family-Centered Care Strategic Plan became a key driver of the corporate-wide strategic planning process. The core values of Patient- and Family-Centered Care changed the lens through which the corporate team members viewed the strategic decision-making process. Family Faculty and the Family Advisory Council played an integral role in collaborating with staff, leading ongoing discussions, contributing to the development and implementation process, and actively participating on Children's Specialized Hospital Operation Excellence Corporate Pillar leadership teams.

As a result of the Patient- and Family-Centered Care Strategic Plan, Children's Specialized Hospital implemented several action plans through its Operation Excellence Model of Performance Improvement. For example:

  • Family Faculty work side-by-side with Children's Specialized Hospital Toms River site. They provide ongoing customer service training to Registration, Scheduling, and Therapy staff. This work has resulted in improvements in Press Ganey Patient Satisfaction Scores, including their Net Promoter Score (likelihood to recommend the hospital score) for outpatient services.
  • The Family Advisory Council partnered with staff to provide solutions for reducing the wait list for high volume services, reducing the new patient appointment wait list for one service from 2500 to fewer than 100 children over a one year period of time.
  • The Patient and Family Centered Leadership Operation Excellence initiative included the Service Excellence Standards of Behavior survey. This survey ranked behaviors by importance for how staff treats patients, their families and each other. This information will be incorporated into new standards of behaviors to redefine a revised employee recognition program.

Excellence in Quality Improvement Award

In 2014, the New Jersey Hospital Association (NJHA), through its Institute for Quality and Patient Safety, recognized the innovative Patient- and Family-Centered Care (PFCC) program at Children's Specialized Hospital (CSH), by awarding Children's Specialized Hospital the Excellence in Quality Improvement Award. According to Amy Mansue, President and CEO of CSP, "...Ms. Provenzano, Director Family-Centered Care, and her team have created a partnership with the families where we are working together, real time, shoulder to shoulder to improve the clinical care and patient experience for every child we serve...."