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:
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
Discharge Letters and Checklists
 

 Additional Reading

 
Family Outcomes

Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome - family. Crit Care Med. 2012 Feb;40(2):618-624.

Keenan HT, Runyan DK, Nocera M. Child outcomes and family characteristics 1 year after severe inflicted or noninflicted traumatic brain injury. Pediatrics. 2006 Feb;117(2):317-324.

Functional Outcomes

Abdulsatar F, Walker RG, Timmons BW, Choong K. “Wii-Hab” in critically ill children: a pilot trial. J Pediatr Rehabil Med. 2013 Jan 1;6(4):193-204.

Bennett TD. Functional status after pediatric critical care: is it the disease, the cure, or both? Pediatr Crit Care Med. 2015 May;16(4):377-378.

Cameron S, Ball I, Cepinskas G, Choong K, et al. Early mobilization in the critical care unit: a review of adult and pediatric literature. J Crit Care. 2015 Aug;30(4):664-672.

Choong K, Al-Harbi S, Siu K, et al; Canadian Critical Care Trials Group. Functional recovery following critical illness in children: the “wee-cover” pilot study. Pediatr Crit Care Med. 2015 May;16(4):310-318.

Choong K, Foster G, Fraser DD, et al; Canadian Critical Care Trials Group. Acute rehabilitation practices in critically ill children: a multicenter study. Pediatr Crit Care Med. 2014 Jul;15(6):e270-e279.

Choong K, Koo KK, Clark H, et al. Early mobilization in critically ill children: a survey of Canadian practice. Crit Care Med. 2013 Jul;41(7):1745-1753.

Farris RW, Weiss NS, Zimmerman JJ. Functional outcomes in pediatric severe sepsis: further analysis of the researching severe sepsis and organ dysfunction in children: a global perspective trial. Pediatr Crit Care Med. 2013 Nov;14:835-842.

Hopkins RO, Choong K, Zebuhr CA, Kudchadkar SR. Transforming PICU culture to facilitate early rehabilitation. J Pediatr Intensive Care. 2015 Dec;4(4):204-211.

Knoester H, Bronner MB, Bos AP. Surviving pediatric intensive care: physical outcome after 3 months. Intensive Care Med. 2008 Jun;34(6):1076-1082.

Namachivayam P, Taylor A, Montague T, et al. Long-stay children in intensive care: long-term functional outcome and quality of life from a 20-yr institutional study. Pediatr Crit Care Med. 2012 Sep;13(5):520-528.

Ong C, Lee JH, Leow MK, Puthucheary ZA. Functional outcomes and physical impairments in pediatric critical care survivors: a scoping review. Pediatr Crit Care Med. 2016 May;17(5):e247-e259.

Pollack MM, Holubkov R, Funai T, et al; Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Pediatric intensive care outcomes: development of new morbidities during pediatric critical care. Pediatr Crit Care Med. 2014 Nov;15(9):821-827.

Taylor A, Butt W, Ciardulli M. The functional outcome and quality of life of children after admission to an intensive care unit. Intensive Care Med. 2003 May;29(5):795-800.

Global Outcomes

Butt W, Shann F, Tibballs J, et al. Long-term outcome of children after intensive care. Crit Care Med. 1990 Sep;18(9):961-965.
Buysse CM, Raat H, Hazelzet JA, Hop WC, Maliepaard M, Joosten KF. Surviving meningococcal septic shock: health consequences and quality of life in children and their parents up to 2 years after pediatric intensive care unit discharge. Crit Care Med. 2008 Feb;36(2):596-602.

De Mos N, van Litsenburg RR, McCrindle B, Bohn DJ, Parshuram CS. Pediatric in-intensive-care-unit cardiac arrest: incidence, survival, and predictive factors. Crit Care Med. 2006 Apr;34(4):1209-1215.

Jones S, Rantell K, Stevens K, et al; United Kingdom Pediatric Intensive Care Outcome Study Group. Outcome at 6 months after admission for pediatric intensive care: a report of a national study of pediatric intensive care units in the United 
Kingdom. Pediatrics. 2006 Nov;118(5):2101-2108.

Namachivayam SP, Alexander J, Slater A, et al; Paediatric Study Group and Australian and New Zealand Intensive Care Society. Five-year survival of children with chronic critical illness in Australia and New Zealand. Crit Care Med. 2015 Sep;43(9):1978-1985.

Namachivayam P, Shann F, Shekerdemian L, et al. Three decades of pediatric intensive care: who was admitted, what happened in intensive care, and what happened afterward. Pediatr Crit Care Med. 2010 Sep;11(5):549-555.

Pratt CM, Hirshberg EL, Jones JP, et al. Long-term outcomes after severe shock. Shock. 2015 Feb;43(2):128-132.

Quasney MW, López-Fernández YM, Santschi M, Watson RS; Pediatric Acute Lung Injury Consensus Conference Group. The outcomes of children with pediatric acute respiratory distress syndrome: proceedings from the Pediatric Acute Lung Injury Consensus Conference. Pediatr Crit Care Med. 2015 Jun;16(5 Suppl 1):S118-S131.

Van der Heide P, Hassing MB, Gemke RJ. Characteristics and outcome of long-stay patients in a paediatric intensive care unit: a case-control study. Acta Paediatr. 2004 Aug;93(8):1070-1074.

Watson RS, Crow SS, Hartman ME, Lacroix J, Folafoluwa OO. Epidemiology and outcomes of pediatric multiple organ dysfunction syndrome (MODS). Pediatr Crit Care Med. 2016. In press.

Health-Related Quality of Life

Ambuehl J, Karrer A, Meer A, Riedel T, Schibler A. Quality of life of survivors of paediatric intensive care. Swiss Med Wkly. 2007 Jun 2;137(21-22):312-316.
Aspesberro F, Mangione-Smith R, Zimmerman JJ. Health-related quality of life following pediatric critical illness. Intensive Care Med. 2015 Jul;41(7):1235-1246.

Colville GA, Pierce CM. Children’s self-reported quality of life after intensive care treatment. Pediatr Crit Care Med. 2013 Feb;14(2):e85-e92.

Conlon NP, Breatnach C, O’Hare BP, Mannion DW, Lyons BJ. Health-related quality of life after prolonged pediatric intensive care unit stay. Pediatr Crit Care Med. 2009 Jan;10(1):41-44.

Cunha F, Mota T, Teixeira-Pinto A, et al. Factors associated with health-related quality of life changes in survivors to pediatric intensive care. Pediatr Crit Care Med. 2013 Jan;14(1):e8-e15.

Ebrahim S, Singh S, Hutchison JS, et al. Adaptive behavior, functional outcomes, and quality of life outcomes of children requiring urgent ICU admission. Pediatr Crit Care Med. 2013 Jan;14(1):10-18.

Knoester H, Bronner MB, Bos AP, Grootenhuis MA. Quality of life in children three and nine months after discharge from a paediatric intensive care unit: a prospective cohort study. Health Qual Life Outcomes. 2008 Mar 11;6:21.

Morrison AL, Gillis J, O'Connell AJ, Schell DN, Dossetor DR, Mellis C. Quality of life of survivors of pediatric intensive care. Pediatr Crit Care Med. 2002 Jan;3(1):1-5.

Polic B, Mestrovic J, Markic J, et al. Long-term quality of life of patients treated in paediatric intensive care unit. Eur J Pediatr. 2013 Jan;172(1):85-90.

Winthrop AL, Brasel KJ, Stahovic L, Paulson J, Schneeberger B, Kuhn EM. Quality of life and functional outcome after pediatric trauma. J Trauma. 2005 Mar;58(3):468-473; discussion 473-474.

Psychosocial Outcomes

Colville G, Kerry S, Pierce C. Children’s factual and delusional memories of intensive care. Am J Respir Crit Care Med. 2008 May 1;177(9):976-982.

Manning JC, Hemingway P, Redsell SA. Protocol for a longitudinal qualitative study: survivors of childhood critical illness exploring long-term psychosocial well-being and needs—The SCETCH Project. BMJ Open. 2014 Jan;15;4(1):e004230.


Nelson LP, Gold JI. Postraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: a review. Pediatric Crit Care Med. 2012 May;13(3):338-347.

PICS Reading
  • Herridge, et al. One-year outcomes in survivors of acute respiratory distress syndrome. NEJM. 2003.
  • Jackson, et al. Six-month neuropsychological outcome of medical intensive care patients.
These two cohort studies followed patients for 6 to 12 months after critical illness.They were some of the very first studies to show that patients do not return to normal after critical illness, but instead frequently experience significant impairments (e.g., weakness, reduced quality of life, depression, anxiety).

  • Iwashyna, et al. Long-term cognitive impairment and functional disability among survivors of severe sepsis. JAMA. 2010.
This study extended the findings of the early cohort studies to show -- in a national population with pre-illness assessments -- that new cognitive impairment and functional disability are common after critical illness.

  • ​Needham, et al. Improving long-term outcomes after discharge from intensive care unit: report from a stakeholders’ conference. Crit Care Med. 2012.
This report named the common new problems after critical illness “Post-Intensive Care Syndrome”, or PICS. This syndrome includes mental health, cognitive function, and physical function domains, as well as mental health problems in families (PICS-family).

  • Woon, et al. Predicting Cognitive Sequelae in Survivors of Critical Illness with Cognitive Screening Tests. Am J Resp Crit Care. 2012.
This study showed that cognitive screens at one month are a poor predictor of cognitive impairment at 6 months after intensive care. This is because the progression of PICS varies across patients (some improve, while others continue to decline after intensive care). We need better tools to predict which patients will experience which problems after critical illness.

  • Melhlhorn, et al. Rehabilitation Inteventions for Post-Intensive Care Syndrome: A Systematic Review. Crit Care Med. 2014.
We are early in our understanding of treating PICS. This systematic review showed that rehabilitation interventions for PICS have had limited success so far.

  • Cameron, et al. One-Year Outcomes in Caregivers of Critical Illness. NEJM. 2016.
This study shows that caregivers of critically ill patients experience high rates of depressive symptoms that often persist for a full year.

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