On the Road to Understanding: Using Qualitative Research to Shape Trauma-Informed Pediatric Critical Care

Critical illness in pediatrics can be a traumatic experience for patients and their families. Approximately 15% of parents of critically ill children have been shown to experience post-traumatic stress disorder (1), a potentially preventable mental health condition that has negative impacts not only on affected parents but also on children, in whom parental traumatic stress has been associated with worse emotional health and decreased ability to progress in rehabilitation for the child (2,3). For years, “family-centered care” has been recognized as a standard of care and encouraged in Society of Critical Care Medicine guidelines as having the power to improve outcomes, mitigate the impact of critical illness, and prepare family members to participate in decision-making (4). More recently, in response to increasing recognition of critical illness as a traumatic event, the essential role of trauma-informed care within family-centered care has become apparent. Trauma-informed care is defined as “physical health, behavioral health, or social services that are provided in a way that acknowledges the prevalence of traumatic experiences among patients, their family members, providers, and staff; accommodates the needs and vulnerabilities of trauma survivors; and minimizes the likelihood that re-traumatization occurs within care systems” (5). To develop evidence-based strategies for family-centered, trauma-informed care, the perspectives and experiences of families are invaluable. Prior studies have evaluated the specific experience of being a caregiver in the PICU during discrete time points, including morning rounds (6), and resuscitations and procedures (7). Although quantitative methods are useful to measure and describe numerical survey data in this field, qualitative methods hold unique and complementary value by offering a rich means of exploring the family experience through data that only words and descriptions of the human experience can fully capture, leading to new theories to guide further inquiry. A study by Ames et al (8) demonstrates the value of qualitative methods in describing the family experience of critical illness in a study exploring the perceived “parent role” in the PICU. In this issue of Pediatric Critical Care Medicine, Evans et al (9) effectively utilize qualitative methodology to understand the experience of families of critically ill children during another discrete phase of pediatric critical illness—the transfer process leading up to PICU admission, emphasizing the value of qualitative research in understanding the lived experience to guide trauma-informed care. This qualitative study conducted open-ended semi-structured interviews of 30 parents (27 in-person; three by telephone) of critically ill children who underwent transfer to a PICU within England or Wales between January 2018 and January 2019. Families were screened initially within the first 48 hours of admission to the PICU with a questionnaire that included consent for future follow-up; diversity of patient age, diagnosis, and pediatric critical care transport experience were sought. Caregivers were then approached for the interview 2–8 months after PICU admission. The study found that the transport process represents a pivotal moment in a patient’s care and can spark complicated emotions. While it is clear that some parts of the experience are shared among many parents—including feeling anxious while awaiting transfer and during times of separation from their child—parents’ experiences are unique and personal. We interpret these findings in the context of a parent’s desire to protect their child and regain some sense of control in an otherwise uncontrollable situation. Many parents preferred to travel with their children; by being present and up to date with their child’s medical needs, parents can regain some power in their ability to provide in-the-moment support and protection to their child. Conversely, parents who found it helpful to travel to the hospital separately may find a sense of control in having a moment to regain a sense of calm while on their own. Parents also demonstrate different needs when it comes to direct interactions with the transfer team and may benefit from the opportunity to express how they would like to communicate or not communicate with the team (e.g., “small talk” as comforting vs detrimental). The study by Evans et al (9) effectively uses qualitative methods to elicit family perspectives which may then be used to guide future evidence-based interventions to reduce the emotional burden and trauma encountered by families of critically ill children during the earliest parts of their child’s illness and PICU stay. This approach of using qualitative research to identify themes/issues (i.e., hypothesis generating) that can be tested using quantitative methods (i.e., hypothesis testing) is a valuable, efficient, and practical approach to complementary scientific inquiry that many fields can benefit from employing. Specifically, concepts from the study by Evans et al (9) may help healthcare teams take tangible steps toward providing trauma-informed care, potentially including early engagement with family members at the bedside to prepare them for the process of transport and initial arrival in the PICU, eliciting and responding to preferences for communication, and perhaps the provision of small “care packs” for parents. Caregiver presence in the ambulance should be offered when possible and time away from caregivers after arrival to the PICU should be minimized. When a prolonged period of separation is necessary, efforts should be made to assign a member of the healthcare team to provide frequent updates to the family. As the health of children cannot be separated from the health of families, it is important to consider the emotional health needs of our patients’ families as we provide trauma-informed care. Post-Intensive Care Syndrome in pediatrics (PICS-p) acknowledges that admission to the PICU can have lasting impacts on a patient’s physical, cognitive, and emotional health and the health of their family as a whole (10). This article’s approach is in line with recommendations regarding PICS in that it breaks down the “silos” separating different phases of a patient’s care and recovery (11), which ultimately aids in the development of evidence-based targeted interventions. It is worth noting that the study by Evans et al (9) only evaluated ambulance transport, and thus further investigation is necessary to understand the unique perspectives of families whose children are transported via helicopter or airplane. Additionally, the high proportion of parents of infants among the study population leads us to question the transferability of described themes to caregivers of older children. As prior studies have demonstrated an association between caregiver stress and various social determinants of health (12), it may be insightful to specifically investigate the role of social determinants of health in shaping the transport experience in future work. Although not a primary aim of the study by Evans et al (9), there is no discussion of the unique challenges encountered in transport medicine, including limited time, personnel, physical space, and available resources, as well as vehicle safety restrictions, all of which may practically limit the ability of transport teams to effectively enact interventions aimed at trauma-informed care. Ultimately, transport medicine providers will be essential partners in this work. Although our priority as critical care providers is to care for the ill child, the study by Evans et al (9) exposes the emotional burden families experience prior to, during, and immediately after the transfer of their child to a PICU, which may have profound and lasting impacts on both the child and his or her family. By utilizing qualitative methodology to elicit rich details about parents’ lived experiences, the study by Evans et al (9) highlights the value of pre- and intra-hospital care teams in minimizing trauma by preparing families for the transport process and PICU admission and communicating in an individualized manner guided by caregiver preference, when possible. Future studies using qualitative methodology to explore the experience and perspectives of patients and families during various time points of critical illness are invaluable in guiding the development of evidence-based interventions in trauma-informed, family-centered care.