Patient- and Family-Centered Care Toolkit

Patient- and family-centered care is an innovative approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care patients, families, and providers. Patient- and family-centered care applies to patients of all ages, and it may be practiced in any health care setting. The process encompasses the following: providing care with dignity and respect to ensure that patient and family perspectives, choices, knowledge, values, beliefs, and cultural backgrounds are incorporated into the planning and delivery of care; sharing information with patients and families that is timely, complete, unbiased, and accurate to foster effective participation in care and decision-making; and encouraging patient and family involvement at the institutional level through collaboration on policy and program development, health care facility design, professional education, and the overall delivery of care. (Adapted from Advancing the Practice of Patient- and Family-Centered Care, Institute of Family-Centered Care)

As it relates to the provision of pediatric emergency medical services, patient- and family-centered care:

(1) recognizes the value of a family’s knowledge about the patient’s condition

(2) encourages information-sharing to promote participation in medical care decision-making

(3) seeks to help family members retain a sense of control during emergency medical care crises

(4) provides the opportunity for family presence during medical transport or invasive procedures

(5) supports the inclusion of family representatives on committees and advisory councils designed to guide health care organizations and create health care policy

EMSC National Resource Center

EMSC Family Advisory Network

This section of the EMSC National Resource Center (NRC) website provides details on its Family Advisory Network, a project developed to facilitate the inclusion of family representatives in state EMSC programs, and includes information on the project’s family-focused listserv and newsletter. (Accessed October 2015)

EMSC Federal Performance Measures.

This section of the EMSC NRC website outlines the 10 performance measures required for the federal EMSC Program that reflect national outcomes needed to improve the delivery of emergency care services to children. Performance Measures 79-80 require permanent establishment of an EMSC presence in a state or territory’s EMS system, and part of this strategy for permanence is the assignment of a family representative to the state or territory’s EMSC Advisory Committee to ensure that family issues are addressed in the emergency care system. (Accessed October 2015)

Family-Centered Prehospital Care: Partnering with Families to Improve Care

Developed by NAEMT in collaboration with the EMSC Program, this resource establishes key definitions and goals associated with family-centered care. It also provides recommendations for providers on family presence and participation in the prehospital environment and during care transfers, and includes tips on how to: provide culturally competent care; engage families of children with special healthcare needs within a response area; and involve family members in local EMS training programs. (2000)

Guidelines for Providing Family-Centered Prehospital Care

The result of a two-day Consensus Panel Meeting held in July 2000 and hosted by NAEMT through a EMSC contract, this resource articulates recommended guidelines for the provision of family-centered prehospital care. The guidelines address topics such as: EMS provider and family member safety, family involvement in EMS training and care provision, the integration of family-centered and culturally competent practices within prehospital care, family preparedness for health emergencies, and the development of stress management programs for EMS providers. (2000)

American Academy of Pediatrics

Technical Report: Patient- and Family-Centered Care of Children in the Emergency Department

This revised technical report draws on previously published policy statements and reports, reviews the current literature, and describes the present state of practice and research regarding patient- and family-centered care for children in the emergency department setting, as well as some of the complexities of providing such care. (January 2015)

Policy Statement: Role of the Medical Home in Family-Centered Early Intervention Services

This policy statement is designed to assist the pediatric health care professional in assuming a proactive role with the interdisciplinary teams, including families and community-based programs, that provide early intervention services. (November 2007)

Policy Statement: Family-Centered Care and the Pediatrician’s Role

This policy statement outlines the core principles of family-centered care, summarizes the recent literature linking family-centered care to improved health outcomes, and lists various other benefits to be expected when engaging in family-centered pediatric practice. The statement concludes with specific recommendations for how pediatricians can integrate family-centered care in hospitals, clinics, and community settings, as well as in more broad systems of care. (September 2012)

Policy Statement: Patient- and Family-Centered Care and the Role of the Emergency Physician Providing Care to a Child in the Emergency Department

Developed in collaboration with the American College of Emergency Physicians (ACEP), this policy statement defines patient- and family-centered care as an approach to health care that recognizes the role of the family in providing medical care; encourages collaboration between the patient, the family, and the health professional; and honors individuals' and families' strengths, cultures, traditions, and expertise. (Reaffirmed January 2012)

American Association of Critical Care Nurses

Improving Family Satisfaction and Participation in Decision Making in an Intensive Care Unit

This study aims to develop and implement an evidence-based communication algorithm and evaluate its effect in improving satisfaction among patients’ families. (October 2013)

Understanding Health Care Professionals’ Views of Family Presence During Pediatric Resuscitation

This study aims to examine the conflicting perceptions that health care professionals hold regarding family presence during pediatric resuscitation. (May 2011)

American College of Emergency Physicians

Guidelines for Care of Children in the Emergency Department

Developed concurrently by ACEP, the AAP, and the Emergency Nurses Association (ENA) – with support for the federal EMSC Program – this policy statement addresses family-centered care issues in health emergencies, including education of the patient, family, and regular caregivers; discharge planning; and family presence during care. (April 2009)

Death of a Child in the Emergency Department

This ACEP/AAP joint policy statement recognizes that emergency physicians should use a family-centered and team-oriented approach when a child dies in the emergency department and should provide personal, compassionate, and individualized support to families while respecting social, religious, and cultural diversity. (Revised April 2014)

American Hospital Association

Patient-Centeredness Bibliography

This section of the AHA’s website provides a bibliography of both current and archived publications and articles related to patient- and family-centered care. (July 2015)

Strategies for Leadership: Patient- and Family-Centered Care

Developed in partnership with the Institute for Family-Centered Care, this toolkit includes a video and discussion companion, a resource guide, and a self-assessment tool to support patient-and family-centered care practices within healthcare provider organizations. (Accessed August 2015)

Emergency Nurses Association

Family Presence During Invasive Procedures and Resuscitation in the Emergency Department

This policy statement affirms that emergency nurses should play an important role in making the option of family presence available to all families who request it. (Revised September 2010)

Family Voices

About Family-Centered Care

Scrolling down to the section “About Family Care,” this Family Voices web page – which focuses on providing leadership for implementing core components of a system of care for children with special healthcare needs – includes links to PDF documents that explain definitions and principles of family-centered care and to family-centered care self-assessment tools for both providers and families. (Accessed October 2015)

Institute for Healthcare Improvement

Patient- and Family-Centered Care Organizational Self-Assessment Tool

This self-assessment tool allows organizations to understand the range and breadth of elements of patient- and family-centered care and to assess where they are against the leading edge of practice. (June 2013)

Society of Critical Care Medicine

Clinical Practice Guidelines for Support of the Family in the Patient-Centered Intensive Care Unit: American College of Critical Care Medicine Task Force 2004–2005

These recommendations – developed through a consensus-panel process – address such topics as: care conferencing to reduce family stress and improve consistency in communication; honoring culturally appropriate requests for truth-telling and informed refusal; spiritual support; staff education; family presence at both rounds and resuscitation; open flexible visitation; family-friendly signage; and family support before, during, and after a death. (2007)

Society of Pediatric Nurses

Position Statement: Safe Staffing for Pediatric Patients

This position statement endorses the belief that all children and families should receive high quality family-centered care. It also addresses staffing issues and recommends that the needs of families be taken into account during patient care. (September 2011)

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.