Abstract
Objective
Identify stakeholders’ tracheostomy decision-making information priorities in the Neonatal Intensive Care Unit (NICU).
Study design
English-speaking caregivers and clinicians who participated in NICU tracheostomy discussions between January 2017 and December 2021 were eligible. They reviewed a pediatric tracheostomy communication guide prior to meeting. Interviews focused on tracheostomy decision-making experiences, communication preferences, and guide perceptions. Interviews were recorded, transcribed, and analyzed using iterative inductive/deductive coding to inform thematic analysis.
Results
Ten caregivers and nine clinicians were interviewed. Caregivers were surprised by the severity of their child’s diagnosis and the intensive home care required, but proceeded with tracheostomy because it was the only chance for survival. All recommended that tracheostomy information be introduced early and in phases. Inadequate communication limited caregivers’ understanding of post-surgical care and discharge requirements. All felt a guide could standardize communication.
Conclusions
Caregivers seek detailed information regarding expectations after tracheostomy placement in the NICU and at home.
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Data availability
The qualitative datasets generated and analyzed during the current study are available from the corresponding author upon reasonable request.
References
Wang CS, Kou YF, Shah GB, Mitchell RB, Johnson RF. Tracheostomy in extremely preterm neonates in the United States: a cross-sectional analysis. Laryngoscope. 2020;130:2056–62. https://doi.org/10.1002/lary.28304
Lee JH, Smith PB, Quek MBH, Laughon MM, Clark RH, Hornik CP. Risk factors and in-hospital outcomes following tracheostomy in infants. J Pediatr. 2016;173:39–44.e1. https://doi.org/10.1016/j.jpeds.2016.01.072
Chang J, Sidell DR. Tracheostomy in infants in the neonatal intensive care unit education/practice gaps. http://neoreviews.aappublications.org/
Mahida JB, Asti L, Boss EF, Shah RK, Deans KJ, Minneci PC, et al. Tracheostomy placement in children younger than 2 years 30-day outcomes using the national surgical quality improvement program pediatric. JAMA Otolaryngol Head Neck Surg. 2016;142:241–6. https://doi.org/10.1001/jamaoto.2015.3302
Amar-Dolan LG, Horn MH, O’Connell B, Parsons SK, Roussin CJ, Weinstock PH, et al. This is how hard it is family experience of hospital-to-home transition with a tracheostomy. Ann Am Thorac Soc. 2020;17:860–8. https://doi.org/10.1513/AnnalsATS.201910-780OC
Graham RJ, Rodday AM, Weidner RA, Parsons SK. The impact on family of pediatric chronic respiratory failure in the home. J Pediatr. 2016;175:40–6. https://doi.org/10.1016/j.jpeds.2016.05.009
Nageswaran S, Golden SL, Gower WA, King NMP. Caregiver perceptions about their decision to pursue tracheostomy for children with medical complexity. J Pediatr. 2018;203:354–60.e1. https://doi.org/10.1016/j.jpeds.2018.07.045
October TW, Jones AH, Michals HG, Hebert LM, Jiang J, Wang J. Parental conflict, regret, and short-term impact on quality of life in tracheostomy decision-making. Pediatr Crit Care Med. 2020:136–42. https://doi.org/10.1097/PCC.0000000000002109
Brenner M, Larkin PJ, Hilliard C, Cawley D, Howlin F, Connolly M. Parents’ perspectives of the transition to home when a child has complex technological health care needs. Int J Integr Care. 2015;15. https://doi.org/10.5334/ijic.1852
Carson SS, Vu M, Danis M, Camhi SL, Scheunemann LP, Cox CE, et al. Development and validation of a printed information brochure for families of chronically critically ill Patients. Crit Care Med. 2012;40:73–8. https://doi.org/10.1097/CCM.0b013e31822d7901
Flanagan F, Healy F. Tracheostomy decision making: From placement to decannulation. Semin Fetal Neonatal Med. 2019;24. https://doi.org/10.1016/j.siny.2019.101037
Nelson JE, Kinjo K, Meier DE, Ahmad K, Morrison RS. When critical illness becomes chronic: Informational needs of patients and families. J Crit Care. 2005;20:79–89. https://doi.org/10.1016/j.jcrc.2004.11.003
Edwards JD, Morris MC, Nelson JE, Panitch HB, Miller RL. Decisions around long-term ventilation for children: perspectives of directors of pediatric home ventilation programs. Ann Am Thorac Soc. 2017;14:1539–47. https://doi.org/10.1513/AnnalsATS.201612-1002OC
Edwards JD, Panitch HB, Nelson JE, Miller RL, Morris MC. Decisions for long-term ventilation for Children perspectives of family members. Ann Am Thorac Soc. 2020;17:72–80. https://doi.org/10.1513/AnnalsATS.201903-271OC
Hebert LM, Watson AC, Madrigal V, October TW. Discussing benefits and risks of tracheostomy: what physicians actually say. Pediatr Crit Care Med. 2017;18:e592–7. https://doi.org/10.1097/PCC.0000000000001341
Xu L, El-Jawahri AR, Rubin EB. Tracheostomy decision-making communication among patients receiving prolonged mechanical ventilation. Ann Am Thorac Soc. 2021;18:848–56. https://doi.org/10.1513/AnnalsATS.202009-1217OC
Stacey D, Légaré F, Lewis K, Barry MJ, Bennett CL, Eden KB, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2017;2017. https://doi.org/10.1002/14651858.CD001431.pub5
Winnipeg Regional Health Authority. Child Tracheostomy Decision Guide; 2013. https://professionals.wrha.mb.ca/old/extranet/eipt/EIPT-023.php. Accessed 19 April 2023.
Damschroder LJ, Aron DC, Keith RE, Kirsh SR, Alexander JA, Lowery JC. Fostering implementation of health services research findings into practice: a consolidated framework for advancing implementation science. Implement Sci. 2009;4. https://doi.org/10.1186/1748-5908-4-50
Stacey D, Légaré F, Boland L, Lewis KB, Loiselle M, Hoefel L, et al. 20th Anniversary Ottawa Decision Support Framework: Part 3 overview of systematic reviews and updated framework. Med Decis Mak. 2020;40:379–98. https://doi.org/10.1177/0272989X20911870
Sandelowski M. Focus on research methods whatever happened to qualitative description? Vol 23. (John Wiley & Sons, 2000).
Sandelowski M. What’s in a name? Qualitative description revisited. Res Nurs Health. 2010;33:77–84. https://doi.org/10.1002/nur.20362
Hennink M, Kaiser BN. Sample sizes for saturation in qualitative research: a systematic review of empirical tests. Soc Sci Med. 2022;292:114523. https://doi.org/10.1016/j.socscimed.2021.114523
Shipman KJ, Mercer AH, Raisanen JC, Jabre NA, Vo HH, Miles A, et al. “What would give her the best life?”: understanding why families decline pediatric home ventilation. J Palliat Med. 2023. https://doi.org/10.1089/jpm.2022.0426
Acknowledgements
The chosen decision guide is being adapted with permission from: HSC Winnipeg Children’s Hospital. Child Tracheostomy Decision Guide, 2011.
Funding
This project was funded in whole or in part by St. Louis Children’s Hospital, and by the Washington University Institute of Clinical and Translational Sciences which is, in part, supported by the NIH/National Center for Advancing Translational Sciences (NCATS), CTSA grant #UL1 TR002345.
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KB designed the study, acquired funding, completed investigation, analyzed, and interpreted data, wrote, and edited the manuscript. KC completed investigation, analyzed, and interpreted the data, wrote, and edited the manuscript. MP designed the study, supervised investigation, analyzed and interpreted data, and edited the manuscript. SB designed the study and edited the manuscript. AH designed the study, acquired funding, supervised investigation, analyzed, and interpreted data, and edited the manuscript.
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The author, MP, was a consultant for UCB Biopharma in 2022 on a topic unrelated to this manuscript.
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The study protocol #202109163 was reviewed and approved by the Washington University in St. Louis Institutional Review Board (IRB). Appropriate consent was obtained from all participants prior to participation.
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Bushroe, K.M., Crisp, K.D., Politi, M.C. et al. Evaluating caregiver-clinician communication for tracheostomy placement in the neonatal intensive care unit: a qualitative inquiry. J Perinatol (2023). https://doi.org/10.1038/s41372-023-01793-3
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DOI: https://doi.org/10.1038/s41372-023-01793-3