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

Abstract

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.

Background

Delirium, defined as a sudden and temporary disturbance of attention, cognition, and awareness, is increasingly recognized in children receiving care in pediatric intensive care units (PICUs) (Liviskie et al., 2023; Semple et al., 2022). These units care for children who require support of vital functions or extended monitoring following surgery or other medical interventions. Delirium affects a significant proportion of children admitted to PICUs, with an incidence ranging from 25% to 60% (Khan et al., 2024; Lei et al., 2023).

Research about the risk factors and outcomes associated with delirium in children is gaining attention. Identified risk factors include the length of stay in the PICU, the need for mechanical ventilation, and the use of benzodiazepines (Xu et al., 2023). Furthermore, studies indicate that children who experience delirium may suffer negative long-term effects on their health-related quality of life (Silver et al., 2020; Thibault et al., 2024).

However, research on how children perceive or remember their time in the PICU while experiencing delirium is very limited. Much of the existing literature on delirium in the intensive care context focuses on the adult perspective (Darbyshire et al., 2016; Gaete Ortega et al., 2020). These studies describe feelings of uncertainty, vulnerability, and existential concerns among adult patients. Furthermore, supportive care during this critical time has shown to be crucial for recovery (Steffen et al., 2025). Additionally, adult patients have reported that addressing these memories can be beneficial in coping with their experiences (Gaete Ortega et al., 2020).

Children’s experiences of PICU care and delirium can also be understood through different psychological perspectives. Children’s ability to interpret and make sense of frightening events is closely linked to their developmental level where younger children tend to rely on concrete reasoning and have limited capacity to grasp medical complexity (Piaget, 1954), potentially making experiences of confusion and loss of control particularly challenging for younger children. Delirium has been described as a potentially traumatizing state (Siegel & Traube, 2020). Trauma research shows that overwhelming or unpredictable situations can lead to fragmented memories, strong emotional reactions, and difficulties integrating the experience (Pynoos et al., 1999; Van der Kolk, 2014). At the same time, children utilize coping strategies (Compas et al., 2012). From a resilience perspective, both contextual factors as well as the individual can buffer distress and promote recovery even in highly stressful healthcare environments (Borge & Larsson, 2011; Ungar, 2012). These psychological frameworks offer important complementary perspectives when examining a child’s subjective experience of delirium and staying at the PICU.

Child-centered care has been increasingly emphasized over the last decade (Ford et al., 2018), drawing inspiration from the United Nations Convention on the Rights of the Child (1989) which underscores children’s right to freely express their views on matters affecting them and mandates that their opinions be seriously considered, reflecting their evolving capacities. This approach also aligns with related concepts like family-centered and person-centered care (Coyne et al., 2018). A recent review identified five key themes of child-centered care: agency, participation, decision-making, communication, and impact (Carter et al., 2024), highlighting that these can be either constrained or facilitated by adults. Given that many children in the PICU suffer from delirium, understanding their perceptions is crucial for implementing a child-centered care approach. Enabling these children to express and share their experiences aligns with the UN Convention on the Rights of the Child (1989) and enhances our ability to deliver child-centered care. Moreover, it helps shape future care practices for this vulnerable population, ensuring their needs and rights are prioritized (Ford et al., 2018). Therefore, this study aims to describe the experiences through the memories of children who have suffered from delirium while hospitalized in the PICU.

Methods

Study Design

This qualitative interview study used photovoice as a method, enabling the participants, in this case children, to identify, represent, and gain control over their experiences through the medium of photography (Wang & Burris, 1997).

Setting

The study was conducted in a six-bed PICU at a tertiary hospital in Sweden. The unit is composed of four single rooms and one double room, which is intended for shorter stays that do not exceed 24 hr. It is expected that one parent will remain with their child continuously, 24/7, during their stay in the PICU. Parents have access to a bed within the same room to facilitate their presence and support for their child throughout the hospital stay. Additionally, nearby facilities are available for basic necessities, such as a shower and the option to prepare simple meals. Both parents, siblings, and other family members are welcome to visit the child at any time. The unit does not employ child life specialists; psychosocial support is provided by counsellors, and pet and music therapy are available on demand. Routine multidisciplinary rounds take place outside patient rooms and primarily address parents rather than directly engaging children. This PICU does not provide cardiac surgery and does not offer ECMO.

Participants

Children who were cared for more than three days and experienced at least one episode of delirium during their stay were eligible for inclusion in the study. Delirium was screened using the Cornell Assessment of Pediatric Delirium (Åkerman et al., 2024; Traube et al., 2014), where a score of 9 or higher indicates the presence of delirium. In the current PICU, nurses conduct assessments at the end of each shift to evaluate the child’s condition. Eligibility criteria also required that these children and their parents could communicate in either Swedish or English. Participants were identified through the follow-up clinic between 1 and 8 months post-discharge. A purposeful sampling method was employed to ensure the inclusion of children across various age groups and with different reasons for admission. Parents to children who had been cared for in the PICU were initially contacted via letter or email, followed by a phone call. Information about the study was provided for parents and tailored to the age of the children in written communication and verbally to the parents during the phone conversation. If they expressed willingness to participate, a meeting was scheduled. If they did not answer the first phone call, a second phone call was made. A total of 13 families were contacted. Three families declined to participate, citing reasons such as the belief that their child would not remember the experience or not having the possibility to come to the hospital. Three other families did not respond to the phone calls, while seven families agreed to participate in the study. Subsequently, seven children were included in the study. Their median age was 6 years, with the interquartile range (Q1–Q3) spanning from 4 to 9 years. Among these participants, three were girls. The children’s length of stay in the PICU averaged 9 days, with individual stays varying from 4 to 21 days. During their time in the PICU, three of the children required invasive mechanical ventilation. The majority of the children (n = 5) reported Swedish as their first language. The mean number of positive delirium screenings per child was 4, ranging from 1 to 8. At the time of the interviews, the median time since their discharge from the PICU was 3 months, with an interquartile range from 1.5 to 9 months. Although the primary focus was on capturing the memories and experiences of the children who stayed in the PICU, parents and siblings were also invited to be present during the photovoice sessions and subsequent interviews. All seven interviews included the presence of at least one parent, with both parents present in five of these sessions. Additionally, siblings were present during three of the interviews. After each session, we debriefed the child and family, provided written contact details for the research team, and offered referral to psychological support or clinical follow-up if needed.

Data Collection

The first interview was conducted in June 2025, and the final interview took place in November of the same year. Contact with the family was initiated by the first author. The interviews were performed by first (n = 4) and second (n = 3) authors. During the photovoice session, initial meet-and-greet time was spent in the interview room to make all participants comfortable and allow them to get to know the interviewer. For the younger children, coloring books and pens were provided so they could draw and play. After a while, when the child seemed more comfortable with the situation, instructions were given, verbally and in writing, on what was going to happen. These instructions were supplemented with drawings from the study participant information, so that even young, non-literate children would understand the written information. They were instructed to use the phone camera, either the interviewer’s or the parents, and together with the interviewer and, if preferred, one or two parents, to visit the PICU room where they had been admitted and take photographs of what they remembered. Rooms were shown as they had appeared during care; mechanical ventilators, bedside monitors, and other equipment (e.g., dialysis) were present but turned off (neutral/display mode) during the photo session. Children took between 3 and 15 photographs each. After the photo session, the child, the parent(s), and interviewer returned to the first room. The photos were printed and reviewed with the child, parent(s), and interviewer; children selected those they remembered best (typically 3–6) to discuss. The child was asked questions about the photos they had taken; the questions were tailored to the child’s age, but their purpose was to encourage the child to describe what was in the photo, what they remembered about what was in the photo, what it meant to them, and any feelings they had regarding the photographs they had taken. Probing questions were used to gain deeper understanding. At the end of each interview, parents were also invited to comment on the photos or memories the child had discussed. The whole session was recorded using two voice recorders. The interviews lasted between 32 and 110 min with a mean of 55 min.

Data Analysis

To analyze the photos and interviews, reflexive thematic analysis was employed, following the six steps outlined by Braun and Clarke (Braun & Clarke, 2006, 2021). Inspiration on how to include the photos in the analytic process was taken from the textual-visual thematic analysis described by Trombeta and Cox (Trombeta & Cox, 2022). This process of analyzing both the interviews and photos began with immersion in the data (Step 1, Searching for themes). This involved active listening during interview transcription and/or focused reading of the interview content. A crucial aspect of this step was the concurrent review of the photographs alongside the interview data, which facilitated a holistic understanding of the children’s experiences. During Step 2 (Generating initial codes), notes taken during Step 1 rendered the generation of initial codes. These codes were derived from recurring themes, emotions, and significant moments identified in both the transcribed interviews and the associated photographs. Building upon these initial codes, we then proceeded to search for broader themes (Step 3). This involved a deeper analysis of the photographs in conjunction with the coded textual data, enabling the identification of underlying connections and overarching narratives reflective of the children’s experiences in the PICU. The identified themes were subsequently subjected to rigorous review (Step 4). This critical assessment ensured that the themes were consistent with both the original interview transcripts and the visual data from the photographs, and accurately aligned with the overarching aims of the study. This iterative process facilitated the refinement of each theme. Following refinement, the themes were precisely defined and clearly named (Step 5). This step also involved distinguishing between main themes and their corresponding subthemes, thereby articulating the intricate nuances of the children’s experiences. Finally, a comprehensive thematic map was developed (Step 6) to visually represent the interrelationships between the identified themes. The ultimate output was a detailed report that encapsulated our findings, illustrating the children’s narratives through the integration of both the textual analysis and the original photographs. The analysis was collaboratively performed by the first, second, and last authors, ensuring a comprehensive approach that drew on multiple perspectives to enhance the rigor of our findings.

Rigor and Reflexivity

The analytic process of this report was significantly shaped by the diverse backgrounds and experiences of the authors, each bringing unique perspectives and pre-understandings from their respective roles in healthcare. The research team’s diverse professional and personal backgrounds enhanced the study’s rigor and reflexivity. The first author, with nearly 15 years in intensive care and current work in the PICU, offered hands-on insight into patient care dynamics and the emotional aspects of pediatric nursing, informed by her own parental experience. The second author, a master’s student in clinical psychology, brought a psychological lens, drawing on her work in maternal and child health psychology, preschool settings, and women’s shelters, while acknowledging that her non-parental perspective might shape her interpretations. The last author, an Associate Professor and pediatric nurse with extensive neonatal intensive care experience, contributed both clinical and research perspectives, enriched by her experiences as a mother.

All three researchers engaged in reflexivity throughout the analysis, consciously considering how their backgrounds and potential biases could influence interpretation. This collective awareness strengthened the depth, empathy, and comprehensiveness of the study’s findings. Additionally, the three authors who did not actively engage in the analysis brought valuable experience in children’s healthcare: one has a background in the PICU setting, while the other two specialize in psychological care. Their contributions enriched the study by providing psychological insights and perspectives on the experiences of families and children during their time in the PICU.

Result

The analysis yielded two main themes: “The bed: an unsafe haven” and “Anchors in the chaos: navigating care and constraint,” along with seven subthemes. Additionally, we identified an overarching theme, “Sudden deprivation,” that emerged as a conceptual backdrop for all other findings, serving as a unifying thread throughout the narratives of the children (Figure 1). This overarching theme encapsulates the shared experiences and emotions expressed by the children, providing a comprehensive understanding of their journeys within the PICU. The main themes and subthemes collectively highlight the complexities of the children’s PICU experience, as well as the varying perceptions and coping mechanisms employed by the children during this challenging time.

Figure 1.

A thematic map of the results

Sudden Deprivation

Being admitted to the PICU was in different ways described as a sudden deprivation, and this overarching theme aims to capture the different forms of abrupt losses associated with the experience. The children conveyed different types of loss in both their interviews and the photographs they took. These included loss of control, loss of agency, loss of self, physical loss, and a loss of reality. Many of the pictures revealed the PICU room from the child’s perspective (Figure 2), featuring a central bed that symbolized its significance in the care experience. This visual representation underscored the emotional weight of being confined to the bed, highlighting the children’s feelings of vulnerability and displacement during their time in the PICU.

Figure 2.

A PICU room from a child’s perspective. The hospital bed surrounded by various medical equipment used by staff, with the outside view visible behind the bed. To the left, there’s a bed for the parent to sleep on, and next to it is a glimpse of a chair where parents can sit close to the child’s bed. Photograph taken by John

The Bed: An Unsafe Haven

The hospital bed was central and mentioned in all the interviews. It was where the children spent most of their time and where essentially everything happened while they were receiving care in the PICU. From the pictures, it became obvious that the children’s point of view was very different from the perspective of the adults. Figure 3 shows a photo capturing what a child sees while being cared for in bed. The image conveys the feeling of being confined to the bed, unable to walk away, emphasizing the child’s perspective and emotional experience of being physically constrained. All children were offered the chance to lie in the bed during the photo sessions, but most refused and all of them showed clear aversive feelings toward it or tried to take control over the situation by setting the terms for how they would lie in bed: “Can I lie the other way around, where I had my feet” (Maja). The bed served a critical role in the healthcare journey not only as a physical space but also as a symbol of vulnerability.

Figure 3.

A view of a bed from the head end. Photograph taken by Molly

Making It Bearable

The children described using different strategies to endure the time in the PICU. Some described ways to try to regain some sense of control over their situation, such as raising the bed up and down using buttons they had access to (Figure 4): “I lowered and lowered and raised. I lowered and lowered and raised, Up and down” (Erik).

Figure 4.

The control buttons that can be reached while in bed. Photograph taken by Erik

The patient table served as a frequent focal point for these control enhancing activities, allowing children to interact with their surroundings and participate in play or meals. This table was commonly photographed (Figure 5) and utilized for multiple purposes, highlighting its importance not only as a functional piece of furniture but also as a symbol of stability and a means for children to assert some agency during their stay in the PICU. When asked about the table, many children answered by describing different activities that took place on the table: “Meatballs and Pringles, painted and played” (Erik). These activities were interpreted as coping strategies that provided the children with opportunities to distract themselves from their circumstances while providing a sense of autonomy in a challenging environment.

Figure 5.

A patient table in the PICU. Photograph taken by Sam

Ways to try to escape or distance oneself from the current situation were also described. It could range from sleeping to pass the time or choosing to look away: “The lights, they were well … a place to look away at instead of just looking at the floor. It was like … towards the lights” (Liam). The patient screen (Figure 6) was frequently mentioned and provided them with a sense of control over their situation. It offered opportunities for them to choose how to spend their time, allowing for moments of distraction and engagement during their stay in the PICU. This element of choice, even in a restricted environment, contributed to their ability to navigate the challenges they faced: “This I definitely remember … I could look at this, I could look at different things, like Bluey” (Molly). The children found ways to make their time at the PICU as bearable as possible with the means that were within their power.

Figure 6.

The screen where the child can watch children’s TV in bed. Photograph taken by Molly

Emotional Turmoil

The interviews and photographs vividly conveyed the emotional turmoil experienced by individuals who find themselves in the vulnerable position of being ill and confined to a hospital bed, with little control over their circumstances. The children expressed feelings of anger, irritation, and frustration: “Yes, frustrated … I remember that I was angry” (Molly). Others described a sense of disconnect or not “being there”: “And then, I mean, those other dark periods would turn up. There were days when I was completely gone, I remember that. And also, I might not have said much that day because I was very tired and my thoughts were just not really there. Uhh, and dad explained it like this: there were certain days when you were completely gone (…) I didn’t want to be myself, or I couldn’t remember myself, and it was more of a scary feeling because, uhh, I recognized that I wasn’t myself. And then it was more like: am I going to become myself again? Waiting, like, I’ll wait another day, maybe I won’t feel this way then” (Liam).

To express their frustration and anger, some children described resorting to actions that reflected their emotional turmoil. After a particularly traumatic experience during a procedure, Maja received a teddy bear as a comfort item (Figure 7). During the interview, she described how she threw the teddy bear to the foot of the bed, making it unreachable. This act symbolized her feelings of helplessness and frustration during her care: “Actually, I was very angry, so I just put it far away so I couldn’t reach it. Because I was so angry” (Maja). These expressions and experiences highlight the complex emotional landscape faced by children during hospitalization.

Figure 7.

Two stuffed animals, including a teddy bear, received by Maja, during her care in the PICU. Photograph taken by Maja

Parents also described significant changes in their child’s behavior and demeanor during their time in the PICU, and expressed concern over their child’s emotional state, observing shifts in their level of engagement and interaction: “I think it was like this Maja, that it was here at the PICU you were gaming the least. No motivation to do anything, you were too worn out for that” (Parent to Maja).

Multifaceted Inferiority in an Imposed Situation

The children interviewed expressed a clear sense of frustration regarding their lack of control over their surroundings, highlighting the oppressive nature of their imposed situations. They described the lack of control over the bed and the presence of numerous cables and lines connected to them: “Let’s start with the bed, I remember lying here, pretty irritated … the bed that kept moving, all the wires. (It was) difficult” (Molly). The bed’s automatic adjustments, intended to reduce the risk of bedsores, were often a source of frustration for the children, highlighting their lack of control: “This (the bed) was a bit annoying, because you know, every other 15 minute it changes, so that if I sat perfectly and comfortable, then I could only sit like that for 15 minutes and then the back could go up, the head could go down and the legs go up so I was lying like this” (Maja). This experience underscored how even the simplest aspects, like choosing how to lie in bed, were beyond their control, emphasizing their sense of inferiority in the PICU environment.

The children reflected on the unavoidable sounds of healthcare staff performing routine checks, such as assessing suction during each shift. The suction equipment, located at the head of Maja’s bed (Figure 8), was tested by staff at the beginning of each shift but was never used on her. Despite this, Maja chose to photograph it, indicating its significance in her experience. This image symbolized routine clinical procedures and highlights the frequency of medical checks, occurring three times a day, within an environment where the child has little to no control.

Figure 8.

Suction equipment. Photograph taken by Maja

During their hospital stay, many procedures were performed without the children’s consent, which contributed to feelings of helplessness: “They put a feeding tube on me … I screamed louder than those neighbors … I couldn’t talk for a whole day. I had to use sign language, and you didn’t understand it very well” (Maja). They also described feeling compelled to comply with procedures despite their desire to escape: “I think I shut my eyes and like crawled under the cover or something or turned around and looked away from everybody but then it was like: come up again! Because they needed to check if I was doing well (…) they were very worried so I had to sit up and look at everybody so that they could see if I was doing well or not and that only made it worse” (Liam). These accounts highlight the children’s sense of inferiority in the PICU setting, where they have little control over what happens to them, underscoring the emotional and psychological challenges they face during their hospitalization.

The photographs taken during this time further illustrated the children’s sense of being in an inferior environment, emphasizing the emotional toll of their conditions. For instance, a photo capturing the largeness of a hospital bed from a child’s perspective (Figure 9) highlights the feelings of overwhelm associated with their experience and serves as a poignant reminder of how daunting the hospital environment can feel from a child’s viewpoint.

Figure 9.

A hospital bed from the child’s perspective. Photograph taken by Lisa

Notably, one child, while wearing a microphone during the interview, articulated a fear of being once again tethered to an infusion: “Am I stuck? (…) I don’t what another infusion … so now I can move freely?” (Maja). This reflected the anxiety and discomfort tied to their experiences of a challenging hospital setting. This lack of autonomy and the frequent interruptions to their sense of normalcy contributed significantly to their emotional distress.

Anchors in Chaos: Navigating Care and Constraint

In the midst of the overwhelming uncertainty and distress, certain elements could serve as anchors, providing stability and support for children and families within the challenging healthcare environment. These anchors could either help or hinder children when navigating the chaotic emotions and experiences they encountered during their stay in the PICU. For instance, a toy car placed behind a glass window (Figure 10), intended to offer distraction and comfort, could instead evoke feelings of confusion, anger, and frustration or even hallucinations. This situation captured both the intended purpose and the unintended emotional impact of these items, including associations with hallucinations experienced during episodes of delirium. It is essential to recognize the dual role these elements play when shaping the emotional landscape of the PICU experience, ultimately influencing how children cope with the challenges they face.

Figure 10.

A toy car behind a glass window. Photograph taken by Liam

The Role of Healthcare Personnel

The children described recalling the presence of healthcare personnel during their stay in the PICU, represented by the specific details noted about the staff’s actions, such as the use of gloves and aprons (Figure 11).

Figure 11.

Apron and gloves used by healthcare personnel. Photograph taken by Sam

The constant observation in the PICU created a sense of being continually surveilled, which may have contributed to feelings of vulnerability, but could also provide a sense of comfort. Molly noted, “This I remember that the staff was always doing things with it (screen used for documenting).” This transparent window wall reinforced the feeling of surveillance experienced by the children, emphasizing how they felt constantly observed during their care. Molly further elaborated, “I remember that the staff was always sitting here (Figure 12) … they were there watching me. They wanted to keep an eye on me.” This dual experience of being monitored illustrated the complexities of children’s emotions in a high-stress environment, highlighting both the reassurance and anxiety that come from constant attention.

Figure 12.

The glass window where staff sit behind during the shift. Photograph taken by Molly

But the healthcare personnel also represented ways to help the children endure their stay in the PICU by playing with them: “And the ones who work here have been fantastic. There were some who would sit down and play with John, and you could really see the difference it made, that they were not just taking care of him. So, you noticed things like that made a big difference” (Parent to John).

The Importance of Family

The children emphasized the importance of having their parents present during their stay in the PICU. The bed used by parents (Figure 13) was an important part of the children’s experiences, associated with a sense of security, as it allowed their parents to stay close during their PICU stay: “It was nice with someone close” (Molly). The physical presence of a mom or dad provided a vital anchor of security in an otherwise unfamiliar and often hostile environment: “You were there close; Ah there’s dad’s body!” (Erik).

Figure 13.

A bed used by parents, it can be unfolded. Photograph taken by Molly

The screen used as a temporary wall in front of the parental bed (Figure 14) served as a privacy barrier and was associated with positive feelings by the children. Throughout the child’s time in the PICU, the screen was often positioned in front of the parental bed, and therefore, it was associated with sense of security and emotional support, since the children remembered that their parents were present behind that screen. This helped them feel more secure in an otherwise stressful environment.

Figure 14.

The screen used as a temporary wall in front of the parental bed. Photograph taken by Liam

The presence of siblings and engaging in everyday activities, such as playing, were described as helping children cope with their time in the PICU: “My little brother was a bit in the bed. He played with me … I think we played a bit with stuffed animals” (Lisa). Further, being able to sit in the arms of a parent served as a significant source of reassurance and feelings of security. This close physical contact allowed them to feel comforted and supported during a challenging time: “That I sat there …. with dad” (Erik).

Beyond the Room

The children recalled memories of events occurring outside their own room, which significantly impacted their experience in the PICU. They mentioned other children in adjacent rooms, noting sounds and activities from their surroundings. There are doors to adjacent patient rooms (Figure 15), potentially affecting the experiences of patients. This connection between patient spaces highlights the shared environment within the PICU: “I remember the neighbors … they screamed like they were idiots, just: iiiihhh iiihhh. I thought they were freaking dumbheads … that made me angry” (Maja).

Figure 15.

The door to the adjacent patient room. Photograph taken by Maja

The children mentioned the helicopter lifting or landing during their stay in the PICU, somewhat connecting them to the outside world (Figure 16): “Parent: You sat here and what did you see? Erik: A helicopter!”

Figure 16.

The view from the patient room, where you can see a helicopter landing. Photograph taken by John

They also recalled things from home, such as pets or friends from school: “Then he brought a bunch of letters that my friends had written—there were about three handwritten letters, so three of my friends had sent these letters (…) Oh, I still have those letters; I’m going to frame them” (Liam). These external memories served a dual purpose. On the one hand, they provided a sense of comfort and connection to the outside world, helping the children endure their stay by reminding them of normalcy and familiarity. On the other hand, these same memories could also become sources of frustration, as they highlighted the limitations of their current situation. “Then I became home sick … the first thing I saw when I came home was the cat” (Molly).

Assumptive Understanding

During the interviews, it became evident that both parents and healthcare personnel often operated with an assumptive understanding of what children want or do not want. This assumption can be particularly problematic, especially considering that the children are already in inferior and imposed situations within the PICU. For instance, while healthcare personnel may place toys in the environment with the intention of making it more child-friendly (Figure 17), these efforts could have the opposite effect capturing feelings of exclusions and loss of control: “Maybe not as positive. Mmm (…) Yes. Like the doors in the back, those were the ones, like wait, those look a little familiar. Then there’s the way it looks shiny. You want to touch it and see if it’s smooth; it looks smooth, at least in there” (Liam).

Figure 17.

A toy robot behind a glass window. Photograph taken by Erik

The children expressed frustration when seeing toys placed behind glass screens, as they felt unable to reach or play with them: “That it (the robot) was there but I didn’t have it” (Erik). Many times, these toys were also placed facing away from the patient room (Figures 18 and 19). These placements, and the distance they created, not only rendered the toys ineffective in providing comfort but also highlighted the lack of control the children experienced in their surroundings. These photographs illustrate the failed attempt to create a child-centered care environment, demonstrating how such placements can inadvertently contribute to feelings of isolation and frustration for children.

Figure 18.

A stuffed animal placed behind a glass window, facing away from the patient room. Photograph taken by Erik

Figure 19.

A teddy bear behind a glass window facing away from the patient room. Photograph taken by Sam

Additionally, while screens are often mentioned as tools for distraction, they can appear hostile to children, especially those experiencing delirium: “The TV. I watched a little TV, not that much (…) Maybe Peppa Pig. I like Peppa Pig. (Do you remember if you thought it was good or bad to be able to watch TV?) Bad” (Maja). The bright lights and constant changes on screens may exacerbate feelings of confusion and anxiety rather than provide the intended relief: “I remember because she talked a lot of nonsense, or whatever you want to call it, and she talked a lot that when she sat and watched TV, and her dad said that she got scared by what was on” (Parent to Maja).

Moreover, the assumption that children do not want to see things happening to them during their care, such as having their blood taken, contradicts their actual desires for agency and participation. Many children expressed a wish to be informed and involved in their treatment processes, indicating that they seek understanding and control amid their helpless situations: “He was really upset when we were trying to protect him … Get him not to see. He was screaming ‘noo I wan’t to see’” (Parent to Sam). This disconnects between the assumptions of adults and the actual needs and wants of the children and underscores the importance of actively engaging pediatric patients in their care and acknowledging their perspectives to improve their overall experience in the hospital setting.

Discussion

This study provides insight into how children cared for in a PICU, while experiencing delirium, remember their time in the PICU. Our primary finding highlights that children in PICUs undergo significant deprivation, which includes loss of control, agency, self-identity, physical agency, and even a sense of loss of reality. Notably, since all children in this study experienced at least one episode of delirium, it is likely that this condition played a role in intensifying these feelings of deprivation. The feeling of being bereaved of their autonomy and agency became evident, alongside the adults’ assumptive understanding of what is best for them. Furthermore, the experiences indicating a perceived lack of child-centered care, particularly in terms of creating a supportive environment and involving children in decision-making processes within the PICU, further exacerbate these experiences of loss. This underscores a broader ethical imperative to genuinely listen to children’s voices, embracing a “thick conception” that recognizes their experiences and concerns as fundamental to their well-being, as advocated by Carnevale (2020).

These findings align with psychological theories of child development, trauma, coping, and resilience. Differences in children’s narratives reflect developmental variation: younger children tended to use concrete, literal explanations, while older children were more able to contextualize their experiences in abstract terms (Piaget, 1954; Vygotsky, 1978). The overarching theme, “Sudden deprivation,” capturing children’s loss of control, agency, and sense of self, reflects core features of potentially traumatic pediatric medical experiences. Central stressors include unpredictability and loss of bodily autonomy (Marsac et al., 2014). Experiences such as frightening hallucinations, disrupted orientation, or being unable to communicate resonate with mechanisms underlying acute traumatic stress and may help to explain the emotional intensity reflected in a lot of the children’s narratives. Some accounts also reflected characteristics commonly described in pediatric trauma literature including fragmented recall, intense affect, and potential symbolic descriptions as the children attempted to make sense of, and talk about, an unpredictable and trying time (Cohen et al., 2018; Pynoos et al., 1999). Concurrently, the subtheme “Making it bearable” highlighted diverse coping strategies and protective relational processes: seeking comfort from parents or staff, using distraction, and mentally distancing from distress. These strategies align with established models of childhood coping and emotion regulation (Compas et al., 2012) and with resilience theory, which emphasizes the interplay of individual strengths and supportive social contexts (Borge & Larsson, 2011; Ungar, 2012). Together, these perspectives provide a deeper understanding of how children navigate the challenges of delirium and intensive care. The children’s delirium accounts in our study were less dramatic than those reported in adult ICU studies, which frequently describe vivid and persecutory hallucinations (Gaete Ortega et al., 2020). This discrepancy may be explained by age-related differences in delirium phenomenology, including developmental stage and limitations in verbalizing complex themes (Piaget, 1954; Vygotsky, 1978). Additionally, sedative/analgesic regimens affecting memory encoding, and the mitigating influence of greater parental presence in the PICU, could have reduced perceived distress (Steffen et al., 2025).

Our findings indicate that the aspects included in the concept of child-centered care: agency, participation, decision-making, communication, and impact, often are overlooked by both parents and staff during the child’s time in the PICU. Consequently, children are deprived of their ability to engage in their own care. Crucially, a truly child-centered approach must be rooted in the philosophical recognition of children as active agents, whose perspectives and experiences hold ethical weight (Carnevale, 2022). A prerequisite for participating in their care and making decisions is effective communication (Carter et al., 2024; Davies et al., 2025). In a child-centered care approach, this involves creating a supportive environment that allows children to express their views, ultimately enabling them to take part in decision-making processes (Boland et al., 2019; Coyne & Gallagher, 2011). It is important to note that a child’s health status may complicate or inhibit their ability to maintain agency, communicate, and participate fully in their care. However, the intention from both parents and healthcare personnel should be to include children in decisions regarding their care whenever possible. To genuinely pursue child-centered care in a PICU setting, it is crucial to reflect on the aspects of agency, participation, communication, and decision-making (Carter et al., 2024). This does not imply that children can decide whether they will undergo procedures like blood draws or if they require monitoring; rather, it recognizes their right to be informed in a manner they can understand and to make decisions within their scope of control, facilitating a child-centered practice (Davies et al., 2025). Ensuring that children feel involved and acknowledged in their care may have the possibility to significantly enhance their experience and emotional well-being during such challenging times. Furthermore, emphasizing that care is child-centered creates opportunities to shape future healthcare practices and policies (Ford et al., 2018). By implementing strategies that take into account the children’s perspectives highlighted in this study, we can foster environments that offer them a sense of control and opportunities for engagement, with the bed area serving as an initial focal point. Additionally, “child-friendly” items should be thoughtfully selected and placed within easy reach to ensure they provide comfort to the intended users. Facilitating a setting that allows for parental presence is essential in fulfilling the key aspects of child-centered care, ultimately enhancing the overall experience for the child. While many themes (child’s perspective, agency, and parental involvement) are broadly relevant to any PICU recovery, our data highlight delirium-specific features: sensory-fragmented memories, ontological uncertainty (e.g., not knowing what was “real”), and neurobiological agitation driving persecutory imagery and physiological fear responses (Cohen et al., 2018; Pynoos et al., 1999). Recognizing young children’s developing reality-distinction means, we cannot definitively attribute all memories solely to delirium; however, the child’s experienced trauma and distress are paramount regardless of precise etiology. Clinically, this distinction necessitates specific care: beyond general child-centered practices, delirium calls for deliberate narrative integration, early screening for cognitive/psychological sequelae, and targeted interventions to reduce persistent post-traumatic symptoms (de Almeida et al., 2025; Stenkjaer et al., 2025).

Methodological Discussion

In this study, trustworthiness was assessed through credibility, transferability, dependability, confirmability, and reflexivity (Korstjens & Moser, 2018). Credibility was strengthened by the researchers’ prolonged engagement and probing questions, allowing for a deeper exploration of the children’s experiences. To further strengthen credibility, triangulation was achieved through the involvement of multiple authors and methods in the coding process, with discussions that enriched the analysis. Direct quotations from participants were included to support the authenticity of the findings. Transferability was ensured by providing detailed descriptions of the context and processes involved in participant selection and data collection. Dependability and confirmability were supported by thorough documentation of the analytical phases. Reflexivity was aspired to by the researchers’ active awareness of their pre-understandings. However, the depth of the discussions may suggest that any biases were kept to a minimum. Our methodological choices, including the emphasis on contextual understanding and interpretation, align with frameworks like participatory hermeneutic ethnography, which seek to bridge contextual complexities with children’s lived experiences (Montreuil & Carnevale, 2018).

In the context of reflexivity, it is essential to recognize the epistemological differences between childhood and adulthood (Kirk, 2007). Researchers may risk imposing adult interpretations on children’s perspectives, particularly when two of the themes in the results pertain to imposed situations and assumptive understandings. To navigate this challenge, reflexivity in the thematic analysis process is crucial (Braun & Clarke, 2019). Following this approach allowed the researchers of the present study to critically examine their biases and preconceptions, striving for a genuine representation of the children’s experience. Additionally, involving children in the research process can enhance the authenticity of their voices (Carnevale, 2022; Kirk, 2007). This approach aligns with the new sociology of childhood, which views children as competent social actors capable of exercising their own agency (Norozi & Moen, 2016). A limitation of this study is that children were only actively involved in one step of the research process. Including children throughout the entire study, by incorporating elements of patient and public involvement, would have strengthened the authority of the results (Bate et al., 2016). Engaging children at multiple stages could provide deeper insights into their perspectives and experiences, thereby enriching the overall findings. This approach would align more closely with principles of child-centered care and enhance the authenticity of their voices in the research (Lundy et al., 2011). Additional limitations include the small, single-center sample limiting generalizability, retrospective recall and reliance on participant-selected photographs risking under-reporting and recall bias, and variable timing of interviews between participants, which restricts analysis of clinical correlates. Finally, ambient modifications during visits (e.g., monitors set to display mode) may have attenuated recall of auditory stimuli.

When interviewing children, several ethical aspects must be carefully considered, including power relations, informed consent, and confidentiality (Kirk, 2007). A vital element in conducting research with children is utilizing methods that enable them to be active participants throughout the research process (Carnevale, 2022). However, it is important to ensure that the chosen methods truly serve the best interests of the child, rather than simply reflecting adult perceptions of what those interests might be (Kirk, 2007). In this study, the use of photovoice was based on the belief that it could help level the power dynamics, giving children control over certain elements during the interviews (Wang & Burris, 1997; Zartler, 2014). This method was also expected to aid in their recollection of experiences and provide tangible topics for discussion that might enrich their narratives (Olausson & Lindahl, 2022). By empowering children to express themselves through visual means, photovoice contributed to a more equitable and meaningful engagement during the interviews (Poku et al., 2019). However, when using this method, it’s essential for the interviewer to be attentive to the reasons behind each photograph taken by the child (Kirk, 2007). Throughout the process, the interviewer stayed with the child, allowing for close observation of their thought processes during the photo session. This presence enabled the researcher to better understand the context and motivations behind each image. As a result, it became clearer to the researcher which photographs were genuinely relevant to the research questions and which were taken for other reasons. This awareness not only enriched the data collected but also ensured that the analysis more accurately reflected the children’s perspectives and experiences, contributing to more meaningful insights. Parents were included primarily for support and to contribute to interviews, recognizing their vital role in younger children’s narrative construction and sense-making processes (Irwin & Johnson, 2005). Their prompts significantly aided children in recalling specific experiences, enriching the data and highlighting the integral part parents play in supporting their children’s narratives within the PICU.

To ensure ethical integrity, the informed consent process involved providing age-appropriate information, visually supplemented with pictures, to ensure children of varying cognitive levels fully grasped the study procedures. The interviewer remained highly attentive to children’s cues, allowing them the flexibility to skip any pictures or questions to maintain their comfort and autonomy throughout the interview. In reporting the results, researchers meticulously considered all information, opting to use pseudonyms and exclude any images that could reveal the identities of children or parents. This stringent commitment prioritized confidentiality and ethical standards, safeguarding participant privacy while effectively conveying the study’s findings.

Conclusion

Being admitted to a PICU can represent a sudden deprivation for the child. A central element of their experience is the bed, which is often perceived as an unsafe haven where they spend most of their time during their stay, experiencing emotional turmoil but also finding ways to endure their stay with means available for them. Throughout this period, children described using anchors to make sense of their experiences, with family being one of the most central and vital. While many of the “child-friendly” items in the healthcare environment aimed to provide comfort, they could have both positive and negative effects. This duality emphasizes the critical role of those around the child, both parents and healthcare personnel, in helping navigate these constraints and enhancing the overall experience. Based on children’s experiences, our results highlight a significant absence of child-centered care. Genuinely implementing this could create a more supportive environment for children and families, improving practices.

Clinical Implication

Based on our findings, PICUs should adopt child-centered care to alleviate the sudden sense of deprivation that many children face during their time at the ward. This can be achieved through the implementation of specific protocols that focus on the needs important for children cared for in the PICU. Practical measures include making the bed-space feel safer and more controllable (allow child access to bed controls where safe, permit familiar items such as a blanket or stuffed animals), introduce predictable routines and visible orientation cues, offer simple, age-appropriate tasks to restore agency (e.g., helping remove a bandage or cleaning non-sterile suction equipment under supervision), prioritize continuous family presence by actively encouraging and involving caregivers in bedside care, individualize “child-friendly” items through shared decision-making to avoid unintended distress, and implement staff training plus a delirium/distress-reduction bundle (communication aids, standardized pain/anxiety management, and non-pharmacologic distraction strategies) to enhance children’s sense of control and well-being.