Patient- and Family-Centered Care Toolkit (2019)

EMSC National Resource Center

AftertheInjury.org

Developed by Children’s Hospital of Philadelphia through an EMSC Targeted Issue grant, this website is designed to help parents learn what to expect and what they can do to help their child recover from an injury. This online parent resource provides healthcare professionals an alternative way to communicate to parents who, at the time of injury, may not be able to absorb all that there is to know. (Updated 2014)

Getting Started, Staying Involved: An EMSC Toolkit for Family Representatives

This guide provides tips on everything needed to help family representatives get started and stay involved in the planning and implementation of state EMSC activities – including maintaining an effective working relationship with the state EMSC program manager, recruiting community partners, and educating legislators. (2008)

Parent to Parent (P2P) USA

P2P Website

Parent to Parent programs across the country have been providing emotional and informational support to families of children who have special needs most notably by matching parents seeking support with an experienced, trained 'Support Parent'. (Accessed October 2015)

Learn Psychology

Navigating Grief: A Guidebook for Grief Awareness & Understanding

Grief is normal and healthy, and grieving people should honor these feelings of loss. They need loved ones to listen to them when they want to talk about their loss and to hold them when they feel overcome by emotions. Most importantly, the bereaved need patience from others. Although grief has stages, it does not have a specific timeline. Learn more about grief, including the different types of grief and how grief counselors can help, with this guide.

Delaware EMSC

The Delaware EMSC project serves as a model for the integration of patient- and family-centered care practices in prehospital pediatric emergency medical services.

At the local level, the family representative assists with the ongoing implementation of the Special Needs Alert Program (SNAP). Through SNAP, the State Office of EMS collects medical information from families who have a child with special health care needs and, upon receiving consent, shares this information with area Basic and Advanced Life Support agencies. SNAP provides the mechanism to help local EMS providers gain a better understanding of individual families’ medical, cultural, linguistic, and psychological needs.

At the state level, the family representative serves on Delaware’s EMSC Advisory Committee not only as an advocate for child and family consumers of EMS services but also as a relevant voice in the activities and charges of the Committee. This is achieved by involving the family representative in the review of pediatric EMS protocols and in the strategic planning for future EMSC projects. In addition, the family representative serves on several formal councils and committees, including the following:

• Delaware Coordinating Council for Children with Disabilities;
• Delaware Interagency Coordinating Council for Birth to Three;
• Delaware Medical Home Program;
• Family Voices (state office);
• the Delaware Partners in Policymaking Training Coordinator; and
• Delawareans with Special Healthcare Needs Medicaid Managed Care Panel.

At the national level, Delaware’s family representative participates in the EMSC Family Advisory Network, is a member of the Bright Futures Title V National Review Panel, and serves as a family representative to the Association of Maternal and Child Health Programs.

Intermountain Regional EMS for Children Coordinating Council

The Intermountain Regional EMS for Children Coordinating Council (IRECC) was formed in 1992 as an alliance of eight states involved in EMSC activities: Arizona, Colorado, Idaho, Montana, Nevada, Northern Marianas Islands, Utah, New Mexico, and Wyoming. The IRECC has since developed into a nonprofit corporation operating under a regional continuing education grant from the Maternal and Child Health Bureau and other revenue sources. IRECC has developed a number of family-centered care resources for emergency care providers and agencies.

Children’s Hospital of Philadelphia

Family-Centered Care Programs continue to influence patient care practices at Children’s Hospital of Philadelphia (CHOP). This is demonstrated through both the procedural changes and the physical enhancements instituted within the hospital. For example, hospital practices incorporate: (1) family presence at physician-led patient rounds and in the emergency department during resuscitation, (2) family sleep spaces as part of the new unit design of critical beds in the cardiac and pediatric intensive care units, and (3) family member representation on key hospital committees – including bioethics, clinical research, and patient safety.

CHOP also created the Family Consultant Program through which four paid “professional family leader” staff members (whose children are patients at CHOP) meet with families, create programs, and bring patient and family voices to communications and patient care. Other relevant CHOP initiatives include “Coffee Hours,” offering inpatient parents a break from patient wards, and CHOP Family News, a quarterly newsletter containing useful information for patients and families, with articles offering tips on everything from proper hand washing techniques to explaining how social workers can assist a family whose child is hospitalized. The information highlights the wide array of services available to families at CHOP.

Finally, the hospital has also established the Family Advisory Council, a group that serves to represent family issues before senior administrators and clinical leaders at the strategic planning level. Some of Council’s family-centered care projects completed to date include: a family-friendly website, family beepers, communications materials, such as "A Families' Guide to Billing;" and a patient/family orientation video. A separate Youth Advisory Council serves to bring the perspectives of pediatric patients and siblings regarding policies and programs at the Children’s Hospital.

Cincinnati Children’s Hospital Medical Center

Cincinnati Children’s Hospital Medical Center incorporates a variety of family-centered care resources for families and health professionals within their care delivery system. Elements of their family-centered care approach include:

• A Family Resource Center, where staff members are available to assist families and medical professionals in learning about clinical conditions. The Resource Center also provides areas for relaxation, parent-to-parent networking opportunities, internet access, and resources for Hispanic communities. Finally, the Center is also available to help families build CarePage, a personalized website designed to keep friends and relatives updated on a child’s condition;
• The Patient Advisory Council, gives patients a voice in the decisions that affect how they receive care and also support current patients, help staff see hospital from patient perspectives, advocate on behalf of patients, and identify ways to make Cincinnati Children’s a better place; and
• The Family Advisory Council, a group consisting of adult patients, family members of pediatric patients, and hospital employees that participates in hospital-wide decision making processes and is a valuable resource for educating families and employees on the topic of family centered care.