A Sudden Deprivation: Children’s Experiences of Pediatric Intensive Care and Delirium Explored Through Photovoice

Children cared for in a pediatric intensive care unit (PICU) while experiencing delirium are a vulnerable group, at risk of undergoing traumatic experiences that may lead to negative outcomes post-discharge. Little is known about how children remember and experience their time in a PICU during severe illness, complicating the implementation of child-centered care that could potentially help them cope with these challenging times. Utilizing the photovoice method, this study aimed to explore the PICU experiences of children who had experienced delirium. Post-discharge, children revisited the ward to photograph their former rooms, thereby capturing and reflecting upon their memories from their time in the unit. The interviews, informed by the photographs taken by the children, were analyzed in conjunction with the images using reflexive thematic analysis. The analysis revealed two main themes, seven subthemes, and an overarching theme: "Sudden Deprivation," which serves as a unifying thread throughout the children's narratives, encompassing losses of control, agency, self-identity, physical autonomy, and reality perception. This deprivation was likely amplified by the delirium experienced by all participants. The two main themes, "The Bed: An Unsafe Haven" and "Anchors in the Chaos: Navigating Care and Constraint," capture the children's experiences throughout their care journey, with "Sudden Deprivation" permeating both themes. This deprivation is further underscored by the lack of effective child-centered care in the PICU; despite the intention to pursue such an approach, key aspects were often overlooked, particularly the need to engage children's agency in creating a supportive environment and involve them in decision-making processes.