Family-Centered Care: From bench to bedside and back

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Family-Centered Care From bench to bedside and
back
Sophia Childrens Hospital

• Jos M. Latour RN, PhD
• Nurse Scientist

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Disclosure

• No financial interest and
• no conflict of interest to declare
• Jos M. Latour
• 23 October 2012

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Route to Knowledge

• 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
20034241090-1091
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History Family-Centered Care

• 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
200924164-170
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History Family-Centered Care

• Patient-Centered Care versus Family-Centered Care
• Which came first, the chicken or the egg?

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Family-Centered Care

• 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
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Family-Centered Care

• 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

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Bench / Bedside

• 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 20051051-3
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 200712173-4
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Bench / Bedside

• Work across health care departments
• Bodenheimer et al. Patient self-management of
  chronic disease in primary care. JAMA
  20022882469-2475
• 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 200240193-205
• Richter et al. Listening to the voices of
  hospitalized high-risk antepartum patient. J
  Obstetr Gynecol Neonat Nurs 200736313-318
• DiGioia et al. Patient and family-centered
  collaborative care An
• orthopaedic model. Clin Orthop Related Res
  200746313-29

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Family-Centered Care
Crit Care Med 2007 35605-622

• Objective To develop clinical practice
  guidelines for support of patient and family in
  adult, pediatric, or neonatal patient-centered ICU

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Family-Centered Care

• 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

43 recommendations
Davidson et al. Crit Care Med 2007
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Families in European NICUs
n9
n9
n35
n10
n10
n45
n22
n35
Greisen G et al. Parents, siblings and
grandparents in the Neonatal Intensive Care Unit.
A survey of policies in eight European countries.
Act Paediatrica 2009991744-1750
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Parents during Rounds

• 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

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Presence (Aronson et al. Pediatrics 2009)
98 parents
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Family during Resuscitation
Erfahrungen deutschsprachiger Intensive- und
Anästhesiepflegekräfte mit der Angehörigenanwesenh
eit während der kardiopulmonalen Reanimation.
Stefan Köberich. intensiv 200715294-298.
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European Position Statement
Fulbrook P, Latour JM, Albarran JW et al Nursing
in Critical Care 200712250-252 Eur J Cardiovasc
Nurs 20076255-258 Infant 2008444-45 Paediatri
c Nursing 20082034-36
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EURYDICE II Study

• Data collection November 2009 to April 2010
• 409 consecutive children died in 45 PICUs
• (N/W Europe, n351 C/E Europe, n58)
• 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 2011371881-1887
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EURYDICE II Study

• 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 2011371881-1887
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Decision Making process
Caring and Sharing by Nurses

• Shared-decision model

Familys autonomy
Family make the decision
Family and physicians share the decision
Rol nurses
Physicians make the decision
No decision is made
Doctors autonomy
Devictor D, Latour JM, Tissières P. Forgoing Life
Sustaining or Death Prolonging Therapy in the
PICU. Ped Clin North Am 200855(3)791-804
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Bedside / Bench

• Patient/Family satisfaction
• Politics
• Health care insurance
• Patient organisations
• Hospital management
• Medical/Nursing professions

Patient Family Satisfaction Quality Performanc
e Indicator
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Latour et al. Parent satisfaction in the
pediatric intensive care Pediatr Clin N Am
200855779-790
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The EMPATHIC Study

• 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

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Explorations
Latour et al. A qualitative study exploring the
experiences of parents of children admitted to
seven Dutch pediatric intensive care units.
Intensive Care Med 201137319-325
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Cohesion PICU

• Parents vs Healthcare Professionals

Latour et al. Differences in perceptions of
parent and healthcare professionals on pediatric
intensive care practices. Ped Crit Care Med
201112e211-e215
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Cohesion NICU
Latour et al. Perceptions of parents, nurses, and
physicians on neonatal intensive care practices.
J Pediatr 2010157215-220
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EMPATHIC Questionnaire (65 items)
Latour et al. Construction and psychometric
testing of the EMPATHIC questionnaire measuring
parent satisfaction in the pediatric intensive
care unit. Intensive Care Med 201137310-318
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EMPATHIC N Questionnaire (57 items)
Latour et al. Development and validation of a
neonatal intensive care parent satisfaction
instrument. Pediatr Crit Care Med 201213554-559
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Outcome

• 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

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Latour JM. Empowerment of parents in the
intensive care. 2011
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Summary

• 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

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• Thank You
• Jos Latour
• j.latour_at_erasmusmc.nl

• Free download thesis
• http//repub.eur.nl/res/aut/17863/