Lived Experiences and Impact of Delirium in Critically Ill Children: a Qualitative Study

Summary of the project: Delirium, a disorder of brain dysfunction characterized by fluctuations in attention, consciousness and cognition, is an important but under-recognized problem in critically ill children. Well known to affect critically ill adults, we now understand that delirium also affects children, and is associated with increased mortality and length of stay as well as long-term adverse functional and quality-of-life sequelae. Delirium is common in critically ill children, affecting at least 25% of the overall population. However, the detection and management of pediatric delirium is challenging due to the lack of awareness of clinicians and researchers and the insufficient understanding of the impact delirium can have on children's physical, emotional and quality of life outcomes. Furthermore, the caregivers (family members and health care providers) of patients who witness PICU delirium will often identify their perception of the child's distress and similarly undergo their own trauma secondary to the impact of caring for the child.While there are numerous publications outlining delirium experiences in adult patients, there is no such body of research evaluating the pediatric experience. The investigators objective is to conduct a qualitative study evaluating the memories and personal experiences in critically ill children with delirium, as well as the caregiver's perception of the experience. The overall goals of this study are to build on the knowledge and understanding of PICU delirium, from the patient's perspective. To the investigator's knowledge this will be the first qualitative study on PICU delirium, and hence will be a significant contribution to this expanding field of research. These results will enable us to better understand the lived experience of delirium and thereby develop management strategies which may include modifying the PICU environment, sleep hygiene and neuro-physical rehabilitation strategies, to address this commonly acquired PICU complication and ultimately optimize the recovery of critically ill children.

Project Plan:

Aim and Objectives: The investigators aim to conduct a qualitative study evaluating the short-and long-term recollection and experiences of critically ill children with delirium. Given that a majority of children may be pre-verbal by nature of age, investigators will aim to determine the caregiver's perception of the child's experience of delirium as well as the personal impact of caring for a child with delirium. The objective is to determine if there are common themes to these experiences, and if these themes are associated with specific pediatric delirium subtypes (hypoactive, hyperactive, and mixed). The overall goal is to better understand the impact of delirium on patients and their caregivers, and develop strategies to improve education, prevention and management when caring for children with PICU-acquired delirium.

Study Design: This qualitative study will be conducted at 2 pediatric ICUs, at McMaster Children's Hospital and New York-Presbyterian Komansky Children's Hospital. The study will initially start at McMaster Children's Hospital and expand to Komansky Children's Hospital once an initial pilot study (estimated 5 interviews) is completed. Critically ill children aged under 18 years, who are diagnosed with delirium during their PICU admission, and/or their caregivers and health care providers, will be approached for consent to participate in qualitative interviews. PICU-acquired delirium will be diagnosed by the Cornell Assessment of Pediatric Delirium (CAPD) score of ≥ 9 for a duration of at least 48 hours from the PICU database. There will be 2 cohorts in the research study; 1) a retrospective cohort, having had diagnosis of delirium within the last 12 months to understand long-standing lived experience of delirium and 2) a prospective cohort with delirium diagnosis within the last 4 weeks to evaluate the immediate, short-term effects of delirium.This prospective cohort will also undergo a 2nd interview to evaluate the long-term effects of delirium.

Methods: Investigators will obtain the demographic data on each participant (age,gender, reason for PICU admission, severity of illness score (PIM 3), the details of their delirium (onset, subtype, duration and management), and which caregivers are interviewed. Hermeneutic qualitative research methods will be used in this study. Hermeneutic approaches are suitable to clarify incomplete, confusing or conflicting data, thus being a beneficial approach in qualitative research. Investigators plan to conduct face-to-face, semi-structured interviews with the patient, their family member and/or the healthcare provider involved in the care in order to understand the patient's lived experience of the event. Prospective interviews will be conducted within 4 weeks following the initial diagnosis of PICU delirium and resolution of critical illness for the child to personally participate in the interview (if cognitively able). A second interview will be conducted 2-6 months post hospital discharge, to determine if there is any perceived longer lasting impact from PICU delirium. Retrospective interviews will be conducted with patients captured from the PICU database who experienced delirium in the last 12 months while admitted to the PICU. Interviews will be guided by an interview key developed by the research team who have expertise in PICU, delirium and qualitative methods, and a patient and family member who have experienced delirium. All interviews will be audio recorded, transcribed verbatim, and anonymized. Participants will be interviewed until data saturation is reached, as is the standard of rigor in qualitative research. Investigators anticipate this will require approximately 30 patients(15 at each site).