The symposium in this issue of AACN Advanced Critical Care focuses on family-centered care (FCC). Family-centered care differs from patient/family-centered care or person-centered care in its focus on care of the family of intensive care unit (ICU) patients. The Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU1 used the following definitions:
Family is defined by the patient or, in the case of minors or those without decision-making capacity, by their surrogates. In this context, the family may be related or unrelated to the patient. Family members are individuals who provide support and have a significant relationship with the patient.
Family-centered care is an approach to health care that is respectful of and responsive to individual families’ needs and values.
It should be noted that during development of these FCC guidelines, the authors sought out validation of the definitions from ICU survivors and families, including members of the LBGTQ (lesbian, bisexual, gay, transgender, and queer/questioning) community before advocating guideline use. This symposium further explores how to bring the concepts found within the FCC guidelines into practice.
This symposium provides a description of the nurse’s role in moving recommendations into practice offered by nurse-members of the FCC guidelines writing panel.1 Maureen Coombs and colleagues present evidence in each of the key areas of the guidelines and make recommendations for how critical care nurses can use the information to guide FCC. In David Hwang’s article, he and colleagues describe translation tools used to enhance the speed clinicians can act to make local change. Ruth Kleinpell presents a review of the outcomes associated from Project Dispatch: Disseminating Patient-Centered Outcomes Research to Healthcare Professionals.2 Like Hwang et al, Kleinpell aims to help clinicians find best practices to enhance FCC in their work environments.
Within the articles of this symposium, the word visitation is replaced with engagement. Nursing practices are moving from simply allowing family to be present (ie, visit) to encouraging family engagement by helping the family to be active members of the healing team. Breanna Hetland and colleagues describe research findings that identify factors in the environment enhancing family presence. With this information, nurses can help eliminate any barriers family members may feel.
Patient and Family Sleep
The FCC guidelines carry forward previous recommendations encouraging and endorsing open flexible family presence.1,3 Encouraging open family presence may lead to family being present at night. Taking into account that family members’ sleep is disturbed during exposure to the patient’s critical illness and that sleep deprivation can lessen a person’s ability to problem solve and make decisions, the FCC guidelines offers recommendations on how to decrease family sleep deprivation (eg, providing family a sleep surface).1 The recommendation to consider family sleep complements the recommendations in the Pain Agitation and Delirium Guidelines that promote preservation of patient sleep.4 Rob Owens and colleagues provide a balanced view of the potential impact of family presence on patient and family sleep. They also provide useful strategies to improve sleep hygiene.
ICU diaries have been used in the Netherlands, Denmark, and other European countries for more than 20 years, but have been slow to make their way into practice in the United States.5–7 These diaries can be written by staff and families and presented to patients at a time when they are able to absorb the information. For families, long-term stress disorders may decrease with diary use7 ; thus, the FCC guidelines recommend using such diaries.1 Truong-Giang Huynh and colleagues describe a replicable process for diary implementation. Further, Elizabeth Scruth and colleagues discuss a novel model for electronic implementation of diaries currently being tested.
Sidney Zisook and I present facilitated sensemaking, a mid-range theory for operationalizing family engagement as a framework for implementing the recommendations within the updated FCC guidelines. The model can be used to teach new ICU nurses how to integrate the principles of FCC into their daily work of caring for critically ill patients.
Writing these aticles has been an interprofessional effort. This is noteworthy because FCC was once considered a topic central only to nursing interest. In this symposium, there is an author collaboration of nursing and physicians from intensive care, psychiatry, bioinformatics, quality management, and sleep science.
The aim of the symposium is to provide readers with best practices for FCC. We now know that FCC is important for preventing post-intensive care syndrome–family, the constellation of long-term mental health, physical, and social outcomes associated with exposure to critical illness.8,9 Actions taken in the ICU can have far-reaching long-term consequences—either preserving or harming patients’ families. Therefore, delivering FCC is not only an extra service or an effort at raising satisfaction scores, but also a matter of public health.
We hope that the articles in this symposium will supplement the FCC guidelines1 by helping clinicians move recommendations into practice for the health of our communities and stimulate advances in the profession through continued testing of FCC interventions.
The author declares no conflicts of interest.