Facilitating Shared Decision Support for Pediatric Tracheostomy

OVERVIEW

In pediatric and neonatal critical care units, a growing number of children with serious underlying illness can only continue to survive with artificial respiratory support. Placement of a tracheostomy and possibly long term mechanical ventilation is a high takes decision that in many situations could be ethically either an acceptable or a non-acceptable choice. Shared decision-making leads to more acceptable outcomes for these children and their parents and relieves the overwhelming burden that parents can face when asked, ‘what do you want us to do?’The materials in PART ONE of this package describe include the approaches developed by parents and clinicians at our children’s hospital for supporting the shared decision-making process when a decision regarding placement of a tracheostomy needs to be made.    

The first resource on the site is a video of parent stories and advice regarding their decision journey. Next, is a training module directed at the clinicians outlining the process of shared decision making along with suggested language to be used in these situations, followed by a ‘Road Map’ for identifying patients who are appropriate for a shared decision and the processes and materials designed to support the shared decision-making process. Other resources include more parent-narrated videos, written and on-line resources available to parents, and guidelines for the content of team and family meetings.    

For our colleagues who wish to initiate or participate in the research that might evaluate and advance these approaches, PART TWO of this package of resources includes the background surveys and interviews with critical care unit staff and with parents that indicate the need for the educational tools and supports found In part one, along with PDF’s of the posters and presentations with results. These approaches and guidelines can be used and adapted for implementation in any children’s hospital’s intensive care unit where high stakes decisions need to be made.

INNOVATION

Part one: The Decision Support Intervention Resources.  

• Parent Video A Tough Decision: Parents’ Perspective on Pediatric Tracheostomy.  
• Learning Module. Facilitating Shared Decision-Making in Pediatric Tracheostomy  
• Guidebook to the comprehensive intervention (The Road Map)
• Videos of Patient Outcomes (8 short videos) 
• Booklet -- Understanding the Tracheostomy Option—Other Parents’ Experiences

Part two: The Research Components. (to be added later)

• Learning Module Survey form 
• Pre-and Post Intervention Parent Survey Forms 
• Pre-and Post Intervention Parent Interview Form
• Pre-and Post Intervention Staff Survey Form
• Pre-Intervention Chart Review protocol

BIBLIOGRAPHY

Talks:  

Kukora S, Ryan K, Arslanian-Engoren C, Yan H, Clarke R, Pituch K, Development and Acceptability Testing of a Tracheostomy Decision Support Video for Parents, Pediatric Academic Societies 2024, Pediatric Academic Societies, Toronto, Canada. (May 2024).

Clarke R, Ryan K, Saul D, Taylor L, Pituch K, Kukora S, Major Decisions for Mature Minors: Navigating Misaligned Patient and Parent Values in Adolescent Tracheostomy Decision-Making, American Society for Bioethics and Humanities Annual Meeting, American Society for Bioethics and Humanities (ASBH), Baltimore, MD. (October 2023).

Baughman K, Clarke R, Ryan K, Pituch K, Kukora S, Tracheostomy: An Opportunity for Improved Shared-Decision Making, American Society for Bioethics and Humanities Annual Meeting, American Society for Bioethics and Humanities (ASBH), Baltimore, MD. (October 2023).

Clarke, R. G., Yan, H., Ryan, K., Arslanian-Engoren, C., Pituch, K. J., & Kukora, S.K. (May 2023). Survey of parent experiences in tracheostomy decision-making. Pediatric Academic Societies Meeting, Washington, D.C.

Kukora, S. K., Yan, H., Clarke, R. G., Arslanian-Engoren, C. & Pituch, K. J. (April 2022). Interprofessional clinicians’ perceptions of family engagement in pediatric tracheostomy decision-making. Pediatric Academic Societies Meeting, Denver, CO.

Yan, H., Kukora, S. K., Pituch, K., Deldin, P. J., Arslanian-Engoren, C., & Zikmund-Fisher, B. J. (October 06, 2020). Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy. The 42nd Annual Meeting of Society for Medical Decision Making, virtual/video recording.

Majumdar, R., Yan, H., Deldin, P., Arslanian-Engoren, C, Graham-Bermann, S., Kukora, S. K., Yates, J. F., & Pituch, K. (July 2018). Parental preferences in decisional autonomy and values-guided approaches in tracheostomy decisions. Pedi-Hope 10th Anniversary Conference, League City, TX.

Posters:      

Clarke R, Ryan K, Yan H, Arslanian-Engoren C, Pituch K, Kukora S, Decision Difficulty and Support from Palliative Care Consultation in Pediatric Tracheostomy Decision-Making: A Qualitative Study of Parents’ Perspectives, Pediatric Academic Societies 2024, Pediatric Academic Societies, Toronto, Canada. (May 2024).

Taylor LC, Arslanian-Engoren C, Kim G, Kukora S, Pituch K, Saul D, Yan H, Baughman K, Shared Decision-Making in Tracheostomy: Development of an Online Learning Module and Survey for Pediatric Medical Teams, Pediatric Academic Societies 2024, Pediatric Academic Societies, Toronto, Canada. (May 2024).

Yan H, Ryan K, Arslanian-Engoran C, Clarke R, Pituch K, Kukora S, Parents' Perception of Shared Decision-Making in Pediatric Tracheostomy Decisions, Society for Medical Decision Making 45th Annual North American Meeting, Society for Medical Decision Making, Philadelphia, PA. (October 2023).

Yan, H., Arslanian-Engoren, C., Pituch, K., Deldin, P. J., & Kukora, S. K. (October 2, 2020). Parent experiences and considerations when facing tracheostomy decisions for a critically ill child. American Academy of Pediatrics National Conference & Exhibition Section on Hospice and Palliative Medicine, virtual.

Yan, Arslanian-Engoren C, Pituch K, Deldin P, Kukora S, Parent Experiences and Considerations when Facing Tracheostomy Decisions for A Critically Ill Child, American Academy of Pediatrics National Conference and Exhibition, American Academy of Pediatrics, Virtual. (2020).

Yan, H., Deldin, P. J., Kukora, S. K., Pituch, K., Arslanian-Engoren, C., & Zikmund-Fisher, B. J. (October 23, 2019). Using narratives to correct forecasting errors in pediatric tracheostomy decision making. The 41st Annual Meeting of Society for Medical Decision Making, Portland, OR.

Majumdar, R., Yan, H., Pituch, K., Deldin, P., Arslanian-Engoren, C., & Kukora, S. K. (May 2019). Decisional authority and values in shared decision-making: Are they enough? Pediatric Academic Societies Meeting, Baltimore, MD. 

Yan, H., Arslanian-Engoren, C., Kukora, S. K., Pituch, K., October, T., Deldin, P. J., Graham-Bermann, S. A., & Yates, J. F. (March 13, 2019). How are pediatric tracheostomy decisions discussed? An analysis of pediatric tracheostomy decision processes. The Annual Assembly of Hospice and Palliative Care, Orlando, FL. 

Publications:

Yan, H.*, Kukora, S. K., Pituch, K., Deldin, P. J., Arslanian-Engoren, C., & Zikmund-Fisher, B. J. (2022). Adapting user-centered design principles to improve communication of peer parent narratives on pediatric tracheostomy. BMC Medical Informatics and Decision Making, 22, Article 197. doi:10.1186/s12911-022-01911-9 

Yan, H.*, Deldin, P. J., Kukora, S. K., Arslanian-Engoren, C., Pituch, K., & Zikmund-Fisher, B. J. (2021). Using narratives to correct forecasting errors in pediatric tracheostomy decision making. Medical Decision Making, 41(3), 305–316. doi:10.1177/0272989X21990693  

Yan, H.*, Kukora, S. K., Arslanian-Engoren, C., Deldin, P. J., Pituch, K., & Yates, J. F. (2020). Aiding end-of-life medical decision making: A Cardinal Issue Perspective. Palliative & Supportive Care, 18(1), 1–3. doi:10.1017/S147895151900098