The Process and Impact of Stakeholder Engagement in Developing a Pediatric Intensive Care Unit Communication and Decision-Making Intervention

Author:

Michelson Kelly N123,Frader Joel245,Sorce Lauren6,Clayman Marla L7,Persell Stephen D8,Fragen Patricia9,Ciolino Jody D10,Campbell Laura C1,Arenson Melanie111,Aniciete Danica Y1,Brown Melanie L12,Ali Farah N21314,White Douglas15,

Affiliation:

1. Division of Pediatric Critical Care Medicine, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

2. Department of Pediatrics, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA

3. Center for Bioethics and Medical Humanities, Northwestern University, Chicago, IL, USA

4. Division of Academic General Pediatrics and Primary Care, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

5. Program in Medical Humanities and Bioethics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

6. Department of Nursing, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

7. Health and Social Development, American Institutes for Research, Chicago, IL, USA

8. Division of General Internal Medicine and Geriatrics, Department of Medicine, Center for Primary Care Innovation, Institute for Public Health and Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

9. Normal Moments, Inc, Naperville, IL, USA

10. Division of Biostatistics, Department of Preventive Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL, USA

11. University of California San Francisco, San Francisco, CA, USA

12. The University of Chicago Comer Children’s Hospital, Chicago, IL, USA

13. Division of Kidney Diseases, Ann & Robert H. Lurie Children’s Hospital of Chicago, Chicago, IL, USA

14. Baxter Healthcare, Deerfield, IL, USA

15. Program in Ethics and Decision Making in Critical Illness, Department of Critical Care Medicine, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA

Abstract

Stakeholder-developed interventions are needed to support pediatric intensive care unit (PICU) communication and decision-making. Few publications delineate methods and outcomes of stakeholder engagement in research. We describe the process and impact of stakeholder engagement on developing a PICU communication and decision-making support intervention. We also describe the resultant intervention. Stakeholders included parents of PICU patients, healthcare team members (HTMs), and research experts. Through a year-long iterative process, we involved 96 stakeholders in 25 meetings and 26 focus groups or interviews. Stakeholders adapted an adult navigator model by identifying core intervention elements and then determining how to operationalize those core elements in pediatrics. The stakeholder input led to PICU-specific refinements, such as supporting transitions after PICU discharge and including ancillary tools. The resultant intervention includes navigator involvement with parents and HTMs and navigator-guided use of ancillary tools. Subsequent research will test the feasibility and efficacy of our intervention.

Publisher

SAGE Publications

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