J Pediatr Intensive Care 2024; 13(01): 063-074
DOI: 10.1055/s-0041-1736547
Original Article

“I Didn't Realize How Hard It Was Going to Be Just Transitioning Back into Life”: A Qualitative Exploration of Outcomes for Survivors of Pediatric Septic Shock

Jonna D. Clark
1   Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, Washington, United States
2   Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, Washington, United States
3   Division of Pediatric Critical Care Medicine, University of Washington, Seattle Children's Research Institute, Seattle, Washington, United States
,
Stephanie A. Kraft
1   Department of Pediatrics, Division of Bioethics and Palliative Care, University of Washington School of Medicine, Seattle, Washington, United States
2   Treuman Katz Center for Pediatric Bioethics, Seattle Children's Hospital and Research Institute, Seattle, Washington, United States
,
Leslie A. Dervan
3   Division of Pediatric Critical Care Medicine, University of Washington, Seattle Children's Research Institute, Seattle, Washington, United States
,
Jane L. Di Gennaro
3   Division of Pediatric Critical Care Medicine, University of Washington, Seattle Children's Research Institute, Seattle, Washington, United States
,
Jill Hurson
4   Medable, Inc., New York, New York, United States
,
Robert S. Watson
3   Division of Pediatric Critical Care Medicine, University of Washington, Seattle Children's Research Institute, Seattle, Washington, United States
5   Center for Child Health, Behavior and Development, Seattle Children's Research Institute, Seattle, Washington, United States
,
Jerry J. Zimmerman
3   Division of Pediatric Critical Care Medicine, University of Washington, Seattle Children's Research Institute, Seattle, Washington, United States
,
Kathleen L. Meert
6   Department of Pediatrics, Children's Hospital of Michigan, Central Michigan University (formerly affiliated with Wayne State University), Detroit, Michigan, United States
,
for the Life After Pediatric Sepsis Evaluation (LAPSE) Investigators › Author Affiliations
Funding This qualitative study was funded by Seattle Children's Research Institute, Center for Clinical and Translational Research, Pediatric Pilot Fund PI Jonna Clark and Seattle Children's Research Institute, Center for Clinical and Translational Research, Faculty Research Support Fund PI Jerry Zimmerman. Life After Pediatric Sepsis was funded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, National Institutes of Health, Department of Health and Human Services ( Grant No.: R01HD073362), and was supported, in part, by the following cooperative agreements: UG1HD050096, UG1HD049981, UG1HD049983, UG1HD063108, UG1HD083171, UG1HD083166, UG1HD083170, U10HD050012, U10HD063106, and U01HD049934.

Abstract

Recovery following pediatric critical illness is multifaceted and complex. While most critically ill children survive, many experience morbidities in physical, emotional, cognitive, and social function. We aimed to deeply explore and describe the multidimensional impact of pediatric septic shock for affected children and their families at the granular level using exploratory qualitative methodology. We performed semistructured telephone interviews of adolescents and caregivers of children admitted with community-acquired septic shock to two tertiary pediatric intensive care units in the United States. Interviews were conducted within two years of hospital admission, and were recorded, transcribed, and analyzed using thematic analysis. Two adolescents and 10 caregivers were interviewed. Participants described meaningful and long-lasting outcomes of septic shock on multiple dimensions of their lives. The adolescents and caregivers described substantial negative consequences on physical health and function which resulted in increased medical complexity and heightened caregiver vigilance. The physical impact led to substantial psychosocial consequences for both the child and family, including social isolation. Most caregivers expressed that septic shock was transformational in their lives, with some caregivers describing posttraumatic growth. This preliminary study provides a novel, granular view of the multidimensional impact of septic shock in pediatric patients and their families. Exploring these experiences through qualitative methodology provides greater insight into important patient and family outcomes. Deeper understanding of these outcomes may support the development of meaningful interventions to improve quality of life for children and their families following critical illness.

Previous Presentation

Limited aspects of this manuscript have previously been presented in abstract form at the 2018 Society of Critical Care Medicine Annual Congress.


* The appendix A is a list of (LAPSE) Investigators.


Supplementary Material



Publication History

Received: 01 July 2021

Accepted: 04 September 2021

Article published online:
22 October 2021

© 2021. Thieme. All rights reserved.

Georg Thieme Verlag KG
Rüdigerstraße 14, 70469 Stuttgart, Germany

 
  • References

  • 1 Balamuth F, Weiss SL, Neuman MI. et al. Conceptualizing post intensive care syndrome in children-the PICS-p framework. Pediatr Crit Care Med 2014; 15 (09) 798-805
  • 2 Manning JC, Pinto NP, Rennick JE, Colville G, Curley MAQ. Conceptualizing post-intensive care syndrome in children – the PICS-p framework. Pediatr Crit Care Med 2018; 19 (04) 298-300
  • 3 Watson RS, Choong K, Colville G. et al. Life after critical illness in children-toward an understanding of pediatric post-intensive care syndrome. J Pediatr 2018; 198: 16-24
  • 4 Bronner MB, Knoester H, Sol JJ, Bos AP, Heymans HS, Grootenhuis MA. An explorative study on quality of life and psychological and cognitive function in pediatric survivors of septic shock. Pediatr Crit Care Med 2009; 10 (06) 636-642
  • 5 Czaja AS, Zimmerman JJ, Nathens AB. Readmission and late mortality after pediatric severe sepsis. Pediatrics 2009; 123 (03) 849-857
  • 6 Farris RW, Weiss NS, Zimmerman JJ. Functional outcomes in pediatric severe sepsis: further analysis of the researching severe sepsis and organ dysfunction in children: a global perspective trial. Pediatr Crit Care Med 2013; 14 (09) 835-842
  • 7 Killien EY, Farris RWD, Watson RS, Dervan LA, Zimmerman JJ. Health-related quality of life among survivors of pediatric sepsis. Pediatr Crit Care Med 2019; 20 (06) 501-509
  • 8 Hodgson CL, Udy AA, Bailey M. et al. The impact of disability in survivors of critical illness. Intensive Care Med 2017; 43 (07) 992-1001
  • 9 Merriam SB, Tisdell EJ. What is qualitative research?. In: Qualitative research: A guide to design and implementation. San Francisco, CA: Jossey-Bass; 2016: 3-21
  • 10 Moyson T, Roeyers H. ‘The overall quality of my life as a sibling is all right, but of course, it could always be better’. Quality of life of siblings of children with intellectual disability: the siblings' perspectives. J Intellect Disabil Res 2012; 56 (01) 87-101
  • 11 Steinhauser KE, Barroso J. Using qualitative methods to explore key questions in palliative care. J Palliat Med 2009; 12 (08) 725-730
  • 12 Vaismoradi M, Turunen H, Bondas T. Content analysis and thematic analysis: Implications for conducting a qualitative descriptive study. Nurs Health Sci 2013; 15 (03) 398-405
  • 13 Atkins E, Colville G, John M. A ‘biopsychosocial’ model for recovery: a grounded theory study of families' journeys after a Paediatric Intensive Care Admission. Intensive Crit Care Nurs 2012; 28 (03) 133-140
  • 14 Carnevale FA, Alexander E, Davis M, Rennick J, Troini R. Daily living with distress and enrichment: the moral experience of families with ventilator-assisted children at home. Pediatrics 2006; 117 (01) e48-e60
  • 15 Colville G, Darkins J, Hesketh J, Bennett V, Alcock J, Noyes J. The impact on parents of a child's admission to intensive care: integration of qualitative findings from a cross-sectional study. Intensive Crit Care Nurs 2009; 25 (02) 72-79
  • 16 Cox CE, Docherty SL, Brandon DH. et al. Surviving critical illness: acute respiratory distress syndrome as experienced by patients and their caregivers. Crit Care Med 2009; 37 (10) 2702-2708
  • 17 Cutler LR, Hayter M, Ryan T. A critical review and synthesis of qualitative research on patient experiences of critical illness. Intensive Crit Care Nurs 2013; 29 (03) 147-157
  • 18 Gallop KH, Kerr CE, Nixon A, Verdian L, Barney JB, Beale RJ. A qualitative investigation of patients' and caregivers' experiences of severe sepsis. Crit Care Med 2015; 43 (02) 296-307
  • 19 Williams CN, Eriksson C, Piantino J. et al. Long-term sequelae of pediatric neurocritical care: the parent perspective. J Pediatr Intensive Care 2018; 7 (04) 173-181
  • 20 Manning JC, Hemingway P, Redsell SA. Stories of survival: Children's narratives of psychosocial well-being following paediatric critical illness or injury. J Child Health Care 2017; 21 (03) 236-252
  • 21 Zimmerman JJ, Banks R, Berg RA. et al; Life After Pediatric Sepsis Evaluation (LAPSE) Investigators. Critical illness factors associated with long-term mortality and health-related quality of life morbidity following community-acquired pediatric septic shock. Crit Care Med 2020; 48 (03) 319-328
  • 22 Zimmerman JJ, Banks R, Berg RA. et al; Life After Pediatric Sepsis Evaluation (LAPSE) Investigators. Trajectory of mortality and health-related quality of life morbidity following community-acquired pediatric septic shock. Crit Care Med 2020; 48 (03) 329-337
  • 23 Dey I. Coding. In: Grounding Grounded Theory: Guidelines for Qualitative Inquiry. London, United Kingdom: Academic Press; 1999: 95-113
  • 24 Ebrahim S, Singh S, Hutchison JS. et al. Adaptive behavior, functional outcomes, and quality of life outcomes of children requiring urgent ICU admission. Pediatr Crit Care Med 2013; 14 (01) 10-18
  • 25 Torres-Andres F, Fink EL, Bell MJ, Sharma MS, Yablonsky EJ, Sanchez-de-Toledo J. Survival and long-term functional outcomes for children with cardiac arrest treated with extracorporeal cardiopulmonary resuscitation. Pediatr Crit Care Med 2018; 19 (05) 451-458
  • 26 Watson RS, Asaro LA, Hertzog JH. et al; RESTORE Study Investigators and the Pediatric Acute Lung Injury and Sepsis Investigators (PALISI) Network. Long-term outcomes after protocolized sedation versus usual care in ventilated pediatric patients. Am J Respir Crit Care Med 2018; 197 (11) 1457-1467
  • 27 Yu YR, Carpenter JL, DeMello AS. et al. Evaluating quality of life of extracorporeal membrane oxygenation survivors using the pediatric quality of life inventory survey. J Pediatr Surg 2018; 53 (05) 1060-1064
  • 28 Als LC, Picouto MD, Hau SM. et al. Mental and physical well-being following admission to pediatric intensive care. Pediatr Crit Care Med 2015; 16 (05) e141-e149
  • 29 Rennick JE, McHarg LF, Dell'Api M, Johnston CC, Stevens B. Developing the children's critical illness impact scale: capturing stories from children, parents, and staff. Pediatr Crit Care Med 2008; 9 (03) 252-260
  • 30 Buysse CM, Raat H, Hazelzet JA, Hop WCJ, Maliepaard M, Joosten KFM. Surviving meningococcal septic shock: health consequences and quality of life in children and their parents up to 2 years after pediatric intensive care unit discharge. Crit Care Med 2008; 36 (02) 596-602
  • 31 Colville G. The psychologic impact on children of admission to intensive care. Pediatr Clin North Am 2008; 55 (03) 605-616 , x
  • 32 Colville GA. Psychological aspects of care of the critically ill child. J Pediatr Intensive Care 2015; 4 (04) 182-187
  • 33 Nelson LP, Gold JI. Posttraumatic stress disorder in children and their parents following admission to the pediatric intensive care unit: a review. Pediatr Crit Care Med 2012; 13 (03) 338-347
  • 34 Hefferon K, Grealy M, Mutrie N. Post-traumatic growth and life threatening physical illness: a systematic review of the qualitative literature. Br J Health Psychol 2009; 14 (Pt 2): 343-378
  • 35 Colville G, Cream P. Post-traumatic growth in parents after a child's admission to intensive care: maybe Nietzsche was right?. Intensive Care Med 2009; 35 (05) 919-923
  • 36 Rodríguez-Rey R, Alonso-Tapia J. Predicting posttraumatic growth in mothers and fathers of critically ill children: a longitudinal study. J Clin Psychol Med Settings 2019; 26 (03) 372-381
  • 37 Rodríguez-Rey R, Alonso-Tapia J, Colville G. Prediction of parental posttraumatic stress, anxiety and depression after a child's critical hospitalization. J Crit Care 2018; 45: 149-155
  • 38 Aspesberro F, Fesinmeyer MD, Zhou C, Zimmerman JJ, Mangione-Smith R. Construct validity and responsiveness of the pediatric quality of life inventory 4.0 generic core scales and infant scales in the PICU. Pediatr Crit Care Med 2016; 17 (06) e272-e279
  • 39 Shudy M, de Almeida ML, Ly S. et al. Impact of pediatric critical illness and injury on families: a systematic literature review. Pediatrics 2006; 118 (3, suppl 3): S203-S218
  • 40 Herbsman JM, D'Agati M, Klein D. et al. Early mobilization in the pediatric intensive care unit: a quality improvement initiative. Pediatr Qual Saf 2020; 5 (01) e256