Family Engagement and Empowerment

Within the ABCDEF bundle, the F element, Family Engagement and Empowerment, focuses on examining the concept of family presence in the ICU and identifying strategies to create family engagement and empowerment.

Guidelines and Tools
Guidelines for Family-Centered Care in the Neonatal, Pediatric, and Adult ICU
Gap Analysis Tool - Identification of Your ICU's Practice Differences
Family-Centered Care Guidelines - Gap Analysis Tool Instructional Video
Family-Centered Care Guidelines - Implementation Tools
Implementing the F component of the ABCDEF bundle
Family-Centered Care Guidelines - Teaching Slides


Patient-centered care is defined as providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions. Empowering family members with shared decision-making, safety and future care expectations engages them in the patient’s care.

Family and patient-centered care focuses on the following characteristics:

  • Keeping patients and families informed
  • Actively involving patients and families in decision-making
  • Actively involving patients and families in self-management
  • Providing both physical comfort and emotional support to patient and families
  • Maintaining a clear understanding of patients’ concepts of illness and cultural beliefs

Social isolation separates patients from their families. Flexible visitation, including an open ICU, daily meetings with the family, and redesign efforts that target family comfort can all positively impact family presence.

Patient benefits of family presence and flexible visitation (Bell L. American Association of Critical-Care Nurses Practice Alert) include:

  • Decreased anxiety, confusion, and agitation
  • Reduction in cardiovascular complications
  • Decreased ICU lengths of stay
  • Providing feelings of security
  • Increase in patient satisfaction
  • Increase in quality and safety
 

 Family and Patient Engagement

 
MyICUCare.org
MyICUCare.org provides numerous resources to help engage patients and families throughout the ICU experience, including:
  • Information on post-intensive care syndrome (PICS)
  • Printable brochures on various care topics
  • Glossary of terms
  • Information on the THRIVE initiative, which aims to help patients and families network with one another through in-person and online support groups.
ICU Issues and Answers Brochures
This series of brochures is available for purchase to distribute in the ICU. A series is available for adult and pediatric populations.
 
In this video series, patients share their perspectives on life after the intensive care unit (ICU).
 
ICU Diary
Families can also help keep an ICU diary for patients and even participate in ICU rounds. It is suggested that ICU diaries benefit patients by decreasing the incidence of PICS.
ICU diaries can be created using standardized print or online templates. A great resource for learning about ICU diaries is icu-diary.org.
Suggested ICU diary contents:
  • Calendar of events and/or milestones
  • Photographs, both of the patient and the unit
  • Entries by staff and/or family
 

 Additional Reading

 

Jabre P, Belpomme V, Azoulay E, et al. Family presence during cardiopulmonary resuscitation. N Engl J Med. 2013 Mar 14;368(11):1008-1018.

Azoulay E, Pochard F, Chevret S, et al. Family participation in care to the critically ill: opinions of families and staff. Intensive Care Med. 2003 Sep;29(9):1498-1504.

Zier LS, Burack JH, Micco G, et al. Doubt and belief in physicians’ ability to prognosticate during critical illness: the perspective of surrogate decision makers. Crit Care Med. 2008 Aug;36(8):2341-2347.

Jabre P, Tazarourte K, Azoulay E, et al. Offering the opportunity for family to be present during cardiopulmonary resuscitation: 1-year assessment. Intensive Care Med. 2014 Jul;40(7):981-987.

Azoulay E, Pochard F, Chevrets S, et al. Half the family members of intensive care unit patients do not want to share in the decision-making process: a study in 78 French intensive care units. Crit Care Med. 2004 Sep;32(9):1832-1838.

Bakitas M, Lyons KD, Hegel MT, et al. Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial. JAMA. 2009 Aug 19;302(7):741-749.

Aslakson R, Cheng J, Vollenweider D, Galusca D, Smith TJ, Pronovost PJ. Evidence-based palliative care in the intensive care unit: a systematic review of interventions. J Palliat Med. 2014 Feb;17(2):219-235.

Scheunemann LP, McDevitt M, Carson SS, Hanson LC. Randomized, controlled trials of interventions to improve communication in intensive care: a systematic review. Chest. 2011 Mar;139(3):543-554.

Schneiderman LJ, Gilmer T, Teetzel HD, et al. Effect of ethics consultations on nonbeneficial life-sustaining treatments in the intensive care setting: a randomized controlled trial. JAMA. 2003 Sep 3;290(9):1166-1172.

Norton SA, Hogan LA, Holloway RG, Temkin-Greener H, Buckley MJ, Quill TE. Proactive palliative care in the medical intensive care unit: Effects on length of stay for selected high-risk patients. Crit Care Med. 2007 Jun;35(6):1530-1535.

Stapleton RD, Engelberg RA, Wenrich MD, Goss CH, Curtis JR. Clinician statements and family satisfaction with family conferences in the intensive care unit. Crit Care Med. 2006 Jun;34(6):1679-1685.

Selph RB, Shiang J, Engelberg R, Curtis JR, White DB. Empathy and life support decisions in intensive care units. J Gen Intern Med. 2008 Sep;23(9):1311-1317.

Thornton JD, Pham K, Engelberg RA, Jackson JC, Curtis JR. Families with limited English proficiency receive less information and support in interpreted intensive care unit family conferences. Crit Care Med. 2009 Jan;37(1):89-95.

Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld GD. Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005 Apr 15;171(8):844-849.

Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007 Feb 1;356(5):469-478.

McDonagh JR, Elliott TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004 Jul;32(7):1484-1488.

Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010 Mar 23;340:c1345.

 

 

 Additional Resources