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Family-Centered Care Program

Parents and families have long recognized and valued the expertise of the healthcare providers who give them care. Parents and families, however, have their own expertise: they know their children and families best. Members of the Partnerships Empowering Parents and Professionals (PEPP) project believe that families and professionals can have a true partnership, where the expertise and opinions of each are important when making decisions about the healthcare of children.

The aspects of family-centered care which are most valued by parents are:

Parent-professional partnerships
Parental decision-making that is informed, valued, and collaborative
Access to critical information

These have not been key elements of healthcare in the traditional medical model. This project seeks to instill these practices into the current healthcare system.

In addition, the project is researching the effectiveness of the family-centered care efforts and components. Families whose children are waiting for liver transplant can participate in the study. These families receive training and support from the PEPP team before, during, and after hospitalization of their child.

Family Intervention

Families attend training and discussion sessions on the following topics:

Before Transplant
Transplantation
Becoming a Partner
Helping During Painful Procedures
Navigating the Insurance Maze
After Transplant
Family Plan for the Transplant
Evaluation
Family Plan for Care

The families develop strategies for coping with aspects of hospitalizations, transplantation, and healthcare partnerships. Through ongoing contact with Parent Mentors and the Family-Centered Care Resource Specialists, they learn to implement and modify these strategies as needed.

Hospital Staff

Staff attend PEPP training and discussion sessions, incorporating what they learn into their own family-centered care practices. These sessions are followed by opportunities (embedded in existing rounds and meetings) to present case studies and resolve issues that arise in the process of implementing this project. Staff will also receive input regarding current practices from the Parent Mentors and the Family-Centered Care Resource Specialists.

Parent Mentor Program

The Parent Mentor Program is one of the key elements of this project. The goal of this program is to provide support, information and resources not available from the professional staff because it comes from the experiences of the parent mentors.

There will be two levels of parent mentors. The first Senior Parent Mentors have been involved in the development of this project through a long-term Family Focus Group. The second level of Parent Mentors are new recruits to the program who will be receiving Parent Mentor Training. Parent Mentors will provide ongoing peer support to study families.

The research component will answer these questions:

Does family-centered care improve consumer satisfaction with patient care?
Does it increase a family's sense of control and self-efficacy over the healthcare process?
Does it improve staff satisfaction?
Does it increase the competency of the family to manage their child's care?
Is it cost-effective?
Does it improve the practice of patient care in terms of communication, collaboration, trust and efficiency among staff and families?

For More Information

Partnerships Empowering Parents and Professionals
A Family-Centered Care Project at Lucile Packard Children's Hospital
750 Welch Road
Palo Alto, CA 94304
(650) 498-6410