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Family-Centered Care: From bench to bedside and back

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. Route to Knowledge. Bench-to-Bedside

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Family-Centered Care: From bench to bedside and back

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  1. Sophia Children’s Hospital Family-Centered Care: From bench to bedside and back Jos M. Latour RN, PhD Nurse Scientist

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

  3. 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 2003:424:1090-1091

  4. 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 2009:24:164-170

  5. History Family-Centered Care Patient-Centered Care versus Family-Centered Care Which came first, the chicken or the egg?

  6. 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

  7. 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 Family-Centered Care

  8. 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 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

  9. Bench / Bedside 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

  10. Objective: To develop clinical practice guidelines for support of patient and family in adult, pediatric, or neonatal patient-centered ICU Family-Centered Care Crit Care Med 2007; 35:605-622

  11. 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 Family-Centered Care 43 recommendations Davidson et al. Crit Care Med 2007

  12. Families in European NICUs n=9 n=35 n=9 n=35 n=10 n=10 n=45 n=22 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

  13. 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

  14. Presence (Aronson et al. Pediatrics 2009) 98 parents

  15. Family during Resuscitation Erfahrungen deutschsprachiger Intensive- und Anästhesiepflegekräfte mit der Angehörigenanwesenheit während der kardiopulmonalen Reanimation. Stefan Köberich. intensiv 2007;15:294-298.

  16. European Position Statement 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

  17. EURYDICE II Study • 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

  18. 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 2011;37:1881-1887

  19. Caring and Sharing by Nurses Decision Making process 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

  20. Patient/Family satisfaction Politics Health care insurance Patient organisations Hospital management Medical/Nursing professions Bedside / Bench Patient & Family Satisfaction = Quality Performance Indicator

  21. Latour et al. Parent satisfaction in the pediatric intensive care Pediatr Clin N Am 2008;55:779-790

  22. 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

  23. 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 2011;37:319-325

  24. 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 2011;12:e211-e215

  25. Cohesion NICU Latour et al. Perceptions of parents, nurses, and physicians on neonatal intensive care practices. J Pediatr 2010;157:215-220

  26. 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 2011;37:310-318

  27. EMPATHIC – N Questionnaire (57 items) Latour et al. Development and validation of a neonatal intensive care parent satisfaction instrument. Pediatr Crit Care Med 2012;13:554-559

  28. 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

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

  30. 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

  31. Thank You Jos Latour j.latour@erasmusmc.nl • Free download thesis: • http://repub.eur.nl/res/aut/17863/

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