Sophia Children’s Hospital
Family-Centered Care:
From bench to bedside and back
Jos M. Latour RN, PhD
Nurse Scientist
Disclosure
No financial interest and
no conflict of interest to declare
Jos M. Latour
23 October 2012
Sophia Children’s Hospital
Route to Knowledge
Sophia Children’s Hospital
Bench-to-Bedside
Basic research first, but then adding clinical experience to
bring ideas to patients
Bedside-to-Bench
‘nurse/physician-scientists' — spending time primarily in the
clinic but seek to do science
Bench/Bedside to Bedside/Bench
Few come from both ways aiming for a specific research niche
Kreeger. From Bench to Bedside. Nature 2003:424:1090-1091
History Family-Centered Care
Sophia Children’s Hospital
 Developed after World War II
 Changing social expectations for the care delivery
 Originate from US and UK
 Research “right time - right place”
 Social readiness for change
Jolley and Shields. The evolution of family-centered care. J Pediatr Nurs 2009:24:164-170
History Family-Centered Care
Sophia Children’s Hospital
Patient-Centered Care versus Family-Centered Care
Which came first, the chicken or the egg?
Family-Centered Care
Sophia Children’s Hospital
 Aims for Quality Improvement:
1. Safety
2. Effectiveness
3. Patient-Centred Care
4. Timeless
5. Efficiency
6. Equity
Committee on Quality of Health Care in America, 2001
Crossing the Quality Chasm: A new health system for the 21st century
Family-Centered Care
Sophia Children’s Hospital
Definition
The professional support of the child and family through a
process of involvement, participation, and partnership,
underpinned by empowerment and negotiation’ Smith et al. 2002
Patient- and family-centered care is an approach to the
planning, delivery, and evaluation of health care that is
grounded in mutually beneficial partnerships among health
care providers, patients, and families. It redefines the
relationships in health care.
Institute for Patient- and Family-Centered Care, www.ipfcc.org
Bench / Bedside
Sophia Children’s Hospital
Principles of family-centered care are well-known
but not consistently implemented into daily practice
Latour. Is family-centred care in critical care units that difficult? A view from Europe. Nurs
Crit Care 2005:10;51-3
What is family?
Needs-experiences as outcome variable
Minimal focus on satisfaction (and limitations)
Latour and Haines. Families in ICU: Do we truly consider their needs, experiences and
satisfaction? Nurs Crit Care 2007:12;173-4
Bench / Bedside
Sophia Children’s Hospital
Work across health care departments
 Bodenheimer et al. Patient self-management of chronic disease in
primary care. JAMA 2002;288:2469-2475
 Boudreaux et al. Family presence during invasive procedures and
resuscitations in the emergency department: A critical review and
suggestions for future research. Ann Emerg Med 2002;40:193-205
 Richter et al. Listening to the voices of hospitalized high-risk
antepartum patient. J Obstetr Gynecol Neonat Nurs 2007;36:313-318
 DiGioia et al. Patient and family-centered collaborative care: An
orthopaedic model. Clin Orthop Related Res 2007;463:13-29
Family-Centered Care
Sophia Children’s Hospital
Crit Care Med 2007; 35:605-622
Objective: To develop clinical practice guidelines for
support of patient and family in adult, pediatric, or
neonatal patient-centered ICU
Family-Centered Care
Sophia Children’s Hospital
 Decision-making
 Family Coping
 Staff stress related to family interaction
 Cultural support of family
 Spiritual and religious support
 Family visitation
 Family environment of care
 Family presence on rounds
 Family presence at resuscitation
 Palliative care
Davidson et al. Crit Care Med 2007
Families in European NICUs
Sophia Children’s Hospital
n=9
n=9
n=35
n=10
n=10
n=45
n=22
n=35
Greisen G et al. Parents, siblings and grandparents in the Neonatal Intensive Care Unit. A survey
of policies in eight European countries. Act Paediatrica 2009;99:1744-1750
Parents during Rounds
Sophia Children’s Hospital
FACTS and MYTHS influencing Round Policies
ICU design: single rooms vs multiple bedded rooms
Length of time: presence has no effect on time
Privacy: Patients and ICU professionals
Teaching: Reduced teaching time
Presence (Aronson et al. Pediatrics 2009)
98 parents
Sophia Children’s Hospital
Family during Resuscitation
Sophia Children’s Hospital
European Position Statement
Sophia Children’s Hospital
Fulbrook P, Latour JM, Albarran JW et al: Nursing in Critical Care 2007;12:250-252
Eur J Cardiovasc Nurs 2007;6:255-258
Infant 2008;4:44-45
Paediatric Nursing 2008;20:34-36
Sophia Children’s Hospital
EURYDICE II Study
Sophia Children’s Hospital
 Data collection: November 2009 to April 2010
 409 consecutive children died in 45 PICUs
(N/W Europe, n=351; C/E Europe, n=58)
 Overall median mortality rate was 4.3% (range 1-11.2%)
Devictor DJ, Latour JM, and the EURYDICE II study Group. Forgoing Life Support: How the
decision is made in European pediatric intensive care units. Intensive Care Medicine
2011;37:1881-1887
EURYDICE II Study
Sophia Children’s Hospital
 86% cases a staff meeting was organized to make
the decision
 Physicians were the primary decision makers in all
groups, with little involvement of the parents in the
final decision
Devictor DJ, Latour JM, and the EURYDICE II study Group. Forgoing Life Support: How the
decision is made in European pediatric intensive care units. Intensive Care Medicine
2011;37:1881-1887
Decision Making process
Sophia Children’s Hospital
Shared-decision model
Family’s
autonomy
Family make
the decision
Family and
physicians
share the decision
Rol
nurses
No decision
is made
Physicians
make the
decision
Doctors’ autonomy
Devictor D, Latour JM, Tissières P. Forgoing Life Sustaining or Death Prolonging Therapy in
the PICU. Ped Clin North Am 2008;55(3):791-804
Bedside / Bench
Sophia Children’s Hospital
Patient/Family satisfaction
 Politics
 Health care insurance
 Patient organisations
 Hospital management
 Medical/Nursing professions
Patient & Family
Satisfaction
=
Quality
Performance
Indicator
Sophia Children’s Hospital
Latour et al. Parent satisfaction in the pediatric intensive care Pediatr Clin N Am
2008;55:779-790
The EMPATHIC Study
Sophia Children’s Hospital
Multi-center, descriptive, cross-sectional,
psychometric, prospective cohort study to develop,
test, and implement a parent satisfaction instrument
EMPATHIC = EMpowerment of PArents in THe Intensive Care
Explorations
Sophia Children’s Hospital
Latour et al. A qualitative study exploring the experiences of parents of children admitted to seven
Dutch pediatric intensive care units. Intensive Care Med 2011;37:319-325
Cohesion PICU
Sophia Children’s Hospital
Parents vs Healthcare Professionals
Latour et al. Differences in perceptions of parent and healthcare professionals on pediatric
intensive care practices. Ped Crit Care Med 2011;12:e211-e215
Cohesion NICU
Sophia Children’s Hospital
Latour et al. Perceptions of parents, nurses, and physicians on neonatal intensive care practices.
J Pediatr 2010;157:215-220
EMPATHIC – Questionnaire (65 items)
Sophia Children’s Hospital
Latour et al. Construction and psychometric testing of the EMPATHIC questionnaire measuring
parent satisfaction in the pediatric intensive care unit. Intensive Care Med 2011;37:310-318
EMPATHIC – N Questionnaire (57 items)
Sophia Children’s Hospital
Latour et al. Development and validation of a neonatal intensive care parent satisfaction
instrument. Pediatr Crit Care Med 2012;13:554-559
Outcome
Sophia Children’s Hospital
High ratings given to satisfaction items
But… items below our established standard
 Daily consultation with physician
 Discharge planning
 Noise levels and IC-bed space
 Involvement in decision-making on care and treatment
 Differences in information provision by nurses and physicians
 Assigning a primary nurse
Sophia Children’s Hospital
Latour JM. Empowerment of parents in the intensive care. 2011
Summary
Sophia Children’s Hospital
 Bench needed
but with input from the bedside
 Individual patient and family care
but with knowledge of their needs
 Training of intellectual intelligence
but also social intelligence - empathy
Sophia Children’s Hospital
Thank You
Jos Latour
j.latour@erasmusmc.nl
 Free download thesis:
 http://repub.eur.nl/res/aut/17863/