Motivation is key for performance in domains such as work, sport, and learning. Research has established that motivation and the willingness to invest effort generally increase as a function of reward. However, this view struggles to explain some empirical observations—for example, in the domain of sport, athletes sometimes appear to lose motivation when playing against weak opponents—this despite objective rewards being high. This and similar evidence highlight the role of subjective value in motivation and effort allocation. To capture this, here, we advance a novel theory and computational model where motivation and effort allocation arise from reference-based evaluation processes. Our proposal argues that motivation (and the ensuing willingness to exert effort) stems from subjective value, which in turns depends on one’s standards about performance and on the confidence about these standards. In a series of simulations, we show that the model explains puzzling motivational dynamics and associated feelings. Crucially, the model identifies realistic standards  as those more beneficial for motivation and performance. On this basis, the model establishes a normative solution to the problem of optimal allocation of effort, analogous to the optimal allocation of neural and computational resources as in efficient coding.The online version contains supplementary material available at 10.3758/s13423-022-02135-8. Motivation is a key psychological dimension that influences our choices and achievements in every daily activity, such as work, sport, learning, and education. In these and other domains, it is not just skill that matters: Highly motivated employees, sportsmen, and learners invest more effort and achieve better results in their respective domains. There is an emerging consensus that the main role of the motivational system is setting up an optimal level of  effort investment, by balancing the costs and benefits of effort—that is, by answering the question: “Is it worth investing effort in this activity, and how much?”  are key factors underlying the motivation to exert effort. This research has shown that motivation to invest physical  aims at offering a general framework to explain how the brain trades off effort in exchange of reward (or for avoiding punishment). For illustrative purposes, the paper examines the RBM in the context of scenarios such as races, championships, or tournaments. However, as emphasized further in the discussion, the model aims at offering a general account that can be applied to any scenario involving trade-offs between effort and incentives.t , an agent  occupies a specific position Pt. The model proposes that, at each time point, the agent makes predictions about which positions will be occupied at the end of the game by exerting different levels of effort. This is indicated by Pt = 8) and predict that the 10th, 8th, 5th, and 3rd position will be occupied by exerting 0, 0.1, 0.2, and 0.3 units of effort, respectively :This implies that 0 < V(P) < 1 (note that V is higher for better positions). The parameter μ reflects the In other words, the optimal effort level corresponds to the best option in terms of a trade-off between effort cost and the SV expected to be achieved with that effort level .Note that, to the aim of highlighting its specificity, the model we have just described relies on various simplifications. First, it assumes that one single time point  matters. Second, it assumes that a single outcome, and not a set of probabilistic outcomes, is predicted for each effort level. Third, it proposes that an agent does not parcel out the future in sequential effort choices, but that it represents the effort assessed during the current choice as encompassing the whole future temporal horizon. Although, as we shall see below, these assumptions facilitate clarity of exposition, it is important to stress that they are appropriate only for a restricted set of conditions. More complex scenarios  require relaxing these assumptions by considering a transition function that links each combination of effort level and position at time t to a set of probabilistic positions at time t + 1. This transition function can then be integrated with the value function  and uncertainties about the standard (captured by the parameter σ), determine motivation and appropriate effort levels in different conditions.We illustrate the functioning of the model by focusing on four aspects, concerning the role of the standard parameter μ (Subsection 1 and 2), the role of the uncertainty parameter σ (Subsection 3), the implications of having realistic or unrealistic beliefs about performance (Subsection 4), and the role of learning (Subsection 5).Agentμ = 15, Agentμ = 10, Agentμ = 5, and Agentμ = 1, respectively. Finally, all agents have the same uncertainty about standards .First, we examined the effort level  estimated by each of four car racers who, during a race, occupy various positions (ranging from the 20th to the first) at various time points. Regarding outcome predictions, here all racers predict that two positions will be gained by investing effort and two positions will be lost without effort . However, the agents have different standards, captured by setting the parameter μ to 15, 10, 5 and 1 for each agent, respectively. We will refer to these agents as to VE;red solid lines) and by not exerting effort , both estimated based on Eq. The scenario is described in Fig. VEMAX corresponds to the SV associated with maximal level of effort available, calculated based on Eq. For scenarios where more than two effort levels are available, motivation can be defined as follows:mentclass2pt{minimThe motivation estimated in this scenario is illustrated by the middle panels of Fig. Agentμ = 15 and around position 10 for Agentμ = 10. This is because the reference-based aspect introduces a nonlinearity in motivational computations, rendering the model more sensitive to differences in SV in proximity to the standard  and much higher than the standard (positions 7 to 1), while being highly motivated in proximity of the standard (positions 12 to 8). This prediction is novel and requires being assessed empirically.This scenario predicts that motivation follows an inverted U-shape, namely that it is low far from the standard and high close to the standard. For example, Agentμ = 5) and a novice accustomed to the 15th place (Agentμ = 15). The elite athlete appears very sensitive to differences in position between (for example) the fifth and eighth place, thus being highly motivated when around these places. However, the same athlete assigns almost the same SV to the thirteenth and fourteenth place, those losing motivation when around these positions. The converse is true for the novice.The model implies substantial differences in motivation when comparing an elite athlete used to occupy the 5th position (Agentμ = 1) will be most motivated when occupying the third position and not the first. This is banally due to a “boundary effect”: once the first position has been reached, it is not possible to improve it further; therefore, motivation is predicted to be higher in the third position, when further improvement is still possible. The prediction that, for athletes accustomed to victory, the motivation is stronger in proximity of the first place rather than when occupying the first place itself, is novel and requires being tested empirically. Note however that, in real life scenarios, an athlete may set goals which are even higher than just arriving first, for example aiming at beating the world record. Boundary effects would be erased in this example, with the athlete showing strong motivation despite occupying the first place.The scenario reveals that the best athlete , positive for a few positions below the standard , and negative for a few positions above the standard .The bottom panels of Fig. mentclass2pt{minimmentclass2pt{minimIn the scenario above, we made three simplifying assumptions. First, we assumed that both elite athletes and novices could gain (or lose) the same number of positions by investing (or not investing) effort. However, in most realistic scenarios, better athletes can potentially gain more positions than novices by investing effort (and lose less by not investing effort). Second, we assumed that athletes could gain or lose the same number of positions throughout the race. However, in many sports, athletes can realistically expect to gain more positions at the bottom of the rank (as moving from the fourteenth to the thirteenth position in a race is far easier than moving from the second to the first place) and lose more positions at the top. Finally, we assumed that variations in position are equally likely throughout the race. However, in many sports, athletes can change positions more easily at the beginning of the race (when more time is available) than near the end (when time is running out).Agentμ = 10 examined in Fig. Figure In this way, when the athlete occupies the 10th position (the standard), the same number of positions can be gained or lost. However, when the current position is better than the standard  the athlete can lose more positions than those that can be gained. Conversely, when the current position is worse than the standard , the athlete can gain more positions than those that can be lost. In this case, the motivation curve increases and decreases more sharply. Finally, while agents from one to three change positions throughout the race, the fourth agent of Fig. This scenario shows that contextual factors  can influence motivation in various ways. For example, an athlete who believes to be able to earn more (less) positions will be on average more (less) motivated, everything else being equal. As explained by prominent theories of motivation in social and sport psychology, a “self-efficacy” belief is fundamental for performance Bandura, ; for exaIn the previous scenarios, the uncertainty parameter was fixed (σ = 2) for all agents. Here, by varying the uncertainty parameter, we illustrate the implications of having different degrees of uncertainty about one’s own standard. Figure From a psychological perspective, the parameter σ captures the level of uncertainty about one’s own performance. This impacts dramatically on motivation in as much as higher uncertainty leads to distributing motivation more evenly across different positions; in other words, to being somewhat motivated in many circumstances, but never highly motivated. Conversely, low uncertainty boosts motivation in proximity of the standard position , while inhibiting motivation elsewhere.In principle, the uncertainty parameter can be estimated from the history of previous performance. Athletes who find themselves occupying the same position most of the time, will tend to develop low uncertainty, thus being particularly motivated around the typical position and poorly motivated elsewhere. Conversely, athletes used to occupy a wider range of positions will exhibit higher uncertainty, leading to a more widespread motivation across positions, with no extremes. This prediction that variability in past performance shapes the uncertainty parameter and in turn leads to the motivational pattern described in fig. Finally, while here we focus on the uncertainty about the standard, the model could be extended also to consider the uncertainty about outcome predictions . In this extended model, a higher (lower) uncertainty about outcome predictions would determine lower (higher) motivation, similar to what happens with uncertainty about standards. Furthermore, under the assumption that predicting performance is easier when a race is about to end, the extended model would predict a “burst” of motivation near the end of the race—all other factors being equal.SD) and each time predicting that a certain number of positions will be gained or lost with effort or without effort, respectively . Here we simulated the athlete’s choice in terms of exerting effort or not (effort was chosen when the motivation exceeded a threshold of 0.15). By simulating different standard (μ) and uncertainty (σ) parameters, we assessed which parameter set promotes maximal effort, thus potentially maximizing performance.This scenario explores which parameter sets are most beneficial in terms of promoting effort. Consider an athlete occupying different positions over time, with the 10th position being the average  leads to maximal effort. Regarding the uncertainty parameter σ, results indicate that maximal effort ensues when the parameter corresponds to the value of the range, namely to 1.5, 2, 2.5, and 3 in panels 1, 2, 3, and 4, respectively. Intuitively, this occurs because, when σ is higher than the range, the outcome predicted by exerting effort and the outcome predicted without effort will tend to be close in SV, thus diminishing the proportion of effort choices. This is most evident in panel 1, where effort is never exerted when σ > 2.5. Conversely, when σ is lower than the range, the outcome predicted by exerting effort and the outcome predicted without effort will be either very close to one another (resulting in no effort choices) or very far (resulting in effort choices). Thus, the overall proportion of effort choices will tend towards 0.5, which is not as high.Figure This simulation shows that maintaining accurate beliefs about one’s own standard permits to maximize effort investment, hence potentially maximizing performance. At the same time, this simulation indicates that unrealistic standards impair motivation and thus performance. For example, consider an overconfident novice who could realistically achieve the 10th position, but instead expects to win the race . When occupying the 10th position, as in most cases, the novice will be poorly motivated, thus avoiding effort and exhibiting poor performance . Excessively low standards impair performance, too: an underconfident athlete with excessively low standards  despite being able to achieve the third place, will be poorly motivated when occupying the third place, thus preventing the full potential to be realized. The prediction that realistic standards benefit performance is novel and requires being assessed empirically.efficient coding, maintaining that the brain faces the problem of allocating limited computational resources for encoding sensory stimuli. A solution to this problem consists in adapting sensory systems to the statistical properties of their signals and hence allocating more resources to process stimuli that are typical in an environment . This argument links to the notion of  Barlow, . Accordi Barlow, , auditor Barlow,  and olfa Barlow,  systems efficacy of control in the expected value of control model  of the gain of neural firing of sensory systems to background levels of stimulation . Let us examine the impact of having different values for the learning rate parameter. Figure μ1 = 15 but have different learning rates, ranging from zero to one (from the left to the right of the figure). Figure Where do the parameters of the RBM come from? Experience arguably plays a key role. Here we explore how experience might shape the standard parameter μ. A possibility is that standards can be updated even within a single race, implying that the very same position can be assessed very differently at the start or at the end of a race. Let assume that This scenario captures phenomena in sports and other contexts where events might change dramatically someone’s perspective over time. Our example indicates that a novice starting with low standards (μ = 15) who unexpectedly occupies the fifth place might update standards accordingly (with μ = 5 now). The novice might end up being disappointed by a final placement  that would have appeared as remarkable at the start. This can be referred to as the “Cinderella effect”: At the beginning of the tale, Cinderella is not excessively concerned about not joining the ball. Later, she is allowed to join, but shortly afterwards she is denied again this possibility. Now, the prospect of not joining the ball comes with extreme disappointment, although this prospect was not even imagined at the beginning of the tale. These examples stress how experience influences one’s standards and the ensuing motivation, and how this influence might act in a remarkably short time frame .Excellence in domains such as sport, business, and teaching, requires not just skill but also high motivation, and thus high willingness to exert effort. What determines motivation, and how this can be enhanced, is therefore a key question in all the above, and many other, domains. We advance a novel theory and computational model of motivation and effort allocation, arguing that a reference-based SV is attributed to predictions of what can be achieved by exerting different levels of effort. Within this framework, the standard about performance and the uncertainty about this standard emerge as key in determining how valuable effort is in different circumstances. In keeping with the ancient Greek aphorism γνῶϑι σεαυτόν (“know thyself”), the theory predicts that setting up realistic standards, and holding them with appropriate confidence, is conducive of optimal motivation and effort allocation.Previous research has established that motivation is influenced by incentives in such a way that the willingness to exert effort is greater when effort can achieve higher reward  depends on one’s own standard, implying that reaching this position will be evaluated very differently by different individuals . The same holds for supporters of a sportsman or team who unexpectedly exceeds or fails to meet their expectations. The theory fits with common reports of athletes who consistently maintain high standards—namely, reports that for these athletes the negative feelings associated with (unexpected) failures are much greater than the positive feelings associated with (expected) successes. As the famous tennis player Andre Agassi wrote: “A win doesn’t feel as good as a loss feels bad, and the good feeling doesn’t last long as the bad. Not even close” Agassi, . To avoiAlthough we have so far assumed that the higher the motivation and the better the performance, this assumption might need to be nuanced. This is because the theory distinguishes between a positive and negative motivational valence, the former at play when one is driven by gaining positions, the latter when one is driven by avoiding losing positions. A possibility is that, when the motivational valence is negative, stress or Pavlovian aversive reactions such as fight/flight or freezing might arise, with a detrimental impact upon performance . Everything else remains the same. This more general formulation can be applied to a variety of problems in the literature such as foraging or work performance.To give an idea of how the RBM can be applied to real-life conditions, the paper has focused on scenarios such as races or championships. However, the model aims at offering a general explanation of how motivation and the willingness to exert effort arise. Formally, it is straightforward to extend the model to any context where effort needs to be traded off with other incentives (rewards or punishments): Simply, in the equations above Finally, we highlight limitations of the RBM in its current version. First, the RBM assumes that one single time point  matters, while several real-life scenarios require integrating outcomes at multiple time points. Second, the current version of the RBM assumes that, for each effort level, a single outcome is predicted; more realistically, the brain might consider a set of outcomes, each associated with a specific probability. Third, this model is agnostic about the neural processes that underly motivation and effort allocation. Evidence indicates that an important role in these processes is played by neuromodulators such as dopamine, serotonin, and noradrenaline ESM 2(M 2 kb)ESM 3(M 2 kb)ESM 4(M 1 kb)ESM 5(M 2 kb)


Spiritual well-being is the fourth dimension of health, as equally important as physical, mental, and social well-being. The shadow of death associated with cancer triggers children to explore their personal values, meanings, and life goals throughout the illness trajectory, enabling them to identify their unique spiritual needs. Chinese children are generally non-religious, unlike Western children, which affects their spiritual needs. To address the literature gaps, we applied a qualitative, descriptive, phenomenological approach for exploring the spiritual needs of Chinese children hospitalized with cancer. Purposive sampling was conducted in two public hospitals with special wards for pediatric oncology patients in Hunan Province, China. Consequently, 22 children, hospitalized with cancer, were recruited and individually interviewed using a semi-structured interview format. We conducted a thematic analysis of the interview transcripts. Four important themes were identified: the need for self-exploration, inner needs, need for a connection with others, and need for a connection with gods, supernatural powers, and fictional characters. We found that culture significantly influenced the spiritual needs of Chinese children with cancer. Hope was a key factor motivating the children to continue cancer treatment. To address their unique spiritual needs, culturally specific interventions should be developed and incorporated into their care to enhance their spiritual well-being. Cancer is a leading cause of death among children worldwide, with approximately 400,000 children and adolescents being diagnosed with cancer every year . In ChinThe World Health Organization defines spiritual well-being as the fourth dimension of health, as equally important as physical, mental, and social well-being . By defiSpirituality is a complex concept, which seems to be frequently linked to religiosity . HoweverDespite the importance of spirituality in the field of oncology, research in this area, and especially on children, is at a nascent stage. Few studies have explored the spiritual needs of children with cancer. One example in a qualitative study of 60 children aged 6–17 years with advanced cancer in the United States . This stWe applied a descriptive, phenomenological approach in this study. This approach was chosen because it is commonly used to provide detailed descriptions of individuals’ lived experiences .Purposive sampling was used to recruit participants from two public hospitals with special wards for pediatric oncology patients in Hunan Province in south-central China. Specifically, we set out to recruit childhood cancer patients with different types of cancer  and obtained their time since diagnosis , gender , and age . The rationale for choosing these two hospitals was that they offer advanced medical technology, making them the preferred choice for people in this province seeking cancer treatment for their children. The recruitment of participants at these two hospitals ensured the representation of diverse clinical backgrounds.To be eligible for inclusion in the study, participants had to be aged 8–17 years, diagnosed with any type of cancer and treated at any point after their diagnosis, knowing that they had cancer, and be able to speak Chinese. We excluded individuals with identified cognitive and/or behavioral problems, which affected their verbal communication. Although we appreciate that children younger than 8 years also have spiritual needs, they may not have possessed the adequate skills to articulate their thoughts given their immature cognitive development . TherefoClinicalTrials.gov (NCT05371236).We obtained ethical approval for the study (HSEARS20220127001) from the Institutional Review Board of the Hong Kong Polytechnic University. This study has also been registered at The head nurses in the pediatric oncology wards identified eligible children for this study and referred them to the research team. A research team member (QL) then approached the parents of these children and explained the purpose of the study to them in detail. If the parents permitted their children to join, the children were then asked if they were willing to participate in the study. After obtaining written parental consent, we scheduled the interviews.All interviews were conducted by QL  at the patients’ bedsides. Each room only contained two beds with a distance of two and a half meters apart. The two beds were also separated by sound-deadening curtains. Prior to the semi-structured interviews, a pilot was done, and the results showed that conversations were unable to be transfer outside of the curtains once the curtains were drawn. The patients’ privacy was therefore ensured. Because the patients were minors, they were given the option to have their parents and/or caregivers present during the interview. The interviews were conducted using a semi-structured interview guide see  developePrior to the interviews, the researcher (QL) did not have any relationship established with the participants and their parents. This is a common practice in qualitative studies in this population group ,32,33,34All of the interviews, which lasted between 20 and 80 min, were initiated with an open-ended, non-directive question: “How are you feeling today?”. This question was followed by more specific questions on the meaning of spirituality. Probing questions were asked to encourage the participants to share more information. Some examples include: “Which experience in your cancer journey makes you feel fulfilled?” and “What is the impact of spirituality on your cancer journey?”. The interview questions were all tested in three childhood cancer patients with different ages  to make sure that the questions were understandable for our targeted participants, especially those who were at younger ages. All of the interviews were digitally recorded. In addition, field notes were written by QL to document key observations and her interactions with the participants in the interviews. According to the safety protocol, participants who were found to be potentially suicidal or at risk of self-harm would be referred to the nurse in charge on the ward who would inform the physicians to conduct a further clinical assessment.Data saturation was considered to be reached when two coders noted repetition in the participants’ responses and no new subthemes or themes related to spiritual needs were identified . Data saThe data collection and analysis were performed simultaneously. A thematic analysis was performed on the interview transcripts . After tn = 1). Hence, we recruited and interviewed a total of 22 children hospitalized with cancer. Four participants aged 9–11 chose to have their mothers present during the interview. The mean age of our participants was 12.4 years (SD = 3.5). Approximately 50% were female. The majority were diagnosed with leukemia, with lymphoma being the second most common cancer. Most of the children were diagnosed within a year of commencing the study and reported no religious beliefs. From February 2022 to May 2022, we have approached a total of 25 childhood cancer patients. Of them, three refused to participate. The reasons included a lack of interest (n = 2) and hesitation to talk about their feelings (Four themes were derived from the semi-structured interviews. n = 15). As Respondent C11  stated, “I often stare at the ceiling and think about why I am sick”. The respondents posited various causes for their disease. For example, some (n = 6) thought that karma of some kind was the underlying reason for their cancer. For example, Respondent C4  observed: “I have bullied other children before. That’s why now I am punished”. Other respondents attributed their disease to diet. Thus, Respondent C2  stated: “I was a picky eater. I didn’t like to have meat, and so I didn’t have adequate protein. This weakened my immunity system. That’s why I got sick”.Throughout the disease trajectory, children with cancer wanted to know the reason why they, and not others, were sick (n = 9) viewed cancer as a disaster, which was destroying their entire families. As Respondent C15  noted: “My parents always argued and even fought with each other for money after I got sick. I don’t want to treat the disease”. Respondent  expressed a similar view:Apart from seeking the reasons why they had cancer, the respondents also expressed mixed perceptions regarding their experiences of cancer. Some respondents  perceived some positive aspects to having cancer. In particular, they regarded cancer as a challenge and believed that they would become stronger after surviving the disease. Some respondents (n = 4) also stated that this experience made them aware that time was precious, so they would not waste any more time on meaningless pursuits. This view was expressed as follows by Interviewee C10 : “I promised myself that I would perform better in the examination if I recover. After having the disease, I understand that time is precious. I will definitely study harder if I am able to go to school again”.Conversely, some respondent (n = 6) mentioned the topic of death. Specifically, they viewed death as an unavoidable topic having observed that some hospitalized children passed away because of the disease. Sometimes, they also overheard doctors and nurses telling parents that there was no chance of a cure for their children and therefore they did not have to stay in the hospital. All of these events triggered them to think about what death is. However, some respondents (n = 3) said that they seldom discussed this issue with their parents or with healthcare professionals because they always emphasized that the disease could be cured. Therefore, the respondents felt uncertain and could only conjecture about what would happen during the dying process. The following comment by Respondent C11  illustrates this perspective:Some respondents  said they knew what death was because they had previously talked to their parents about the issue. They also felt no fear throughout the illness trajectory because they were prepared for the worst. As Respondent C15  put it:Some other respondents  remarked: “I am not afraid of death. I just worry that I won’t be able to see my mom and dad anymore. They are important to me”.n = 17) mentioned that they desired peace, that is, a sense of tranquility. Although some were hospitalized to undergo cancer treatment with a high probability of being cured, they said they did not feel any peace because they were physically and psychologically tortured by the disease and by persistent negative thoughts. The respondents described feelings such as “being burned alive,” “wanting to jump out of a window,” and “being cramped”. Respondent C9  elaborated on these feelings during the interview:A majority of respondents  expressed the following view: “Even when I was extremely sick, I couldn’t stop thinking about the disease. Sometimes, I preferred to jump out of the window to stop everything instead of being tortured”. To gain a sense of peace, some respondents said that they applied various methods to distract themselves, including drawing, making handicrafts, and talking to others. However, some of the respondents stated that they preferred to stay alone and to deal with their negative thoughts alone. For example, Respondent C18  stated: “I usually lie down on my bed and cry silently. I don’t want to bother anyone. I have already brought a lot of trouble to them”.n = 18) mentioned that they desired hope, which they regarded as a key motivator and source of strength, helping them to overcome the pain and suffering that resulted from cancer and its treatment. As respondent C18  stated, “I always tell myself that I can’t die. I am still young. I still have a lot of things ahead of [me in] my life. That’s why I tolerate all of this [cancer and its treatment] even [though it is] so painful”. Hope, according to the respondents, could be influenced by things that happen in the short term or the long term. Short-term influences mentioned by most respondents included feeling much more hopeful when they knew that there was an improvement in the clinical data.Apart from peace, many respondents  as follows: “I pay attention to any change in my white blood cell count. When I know the count is stable, it seems that the disease is under control. Then, I feel there is a hope in my life again”. When speaking about the long term, most respondents mentioned that they had a lot of dreams and goals to accomplish in their lives, which included going back to school, being able to eat what they wanted, and traveling and career aspirations as adults. All of these aspirations became their hopes and drove them to fight continuously to overcome the disease. Respondent C19  stated: “I believe that I can go back to the school very soon. All my classmates are studying, and I am the one in the hospital. They are waiting for me. I will recover”.n = 8) said that they would like to talk to their loved ones, especially their mothers, when experiencing emotional distress because they gained considerable relief after sharing. As Respondent C7  remarked, “My mom told me that I must tell her when I am feeling unhappy. I did. I felt much happier after saying it (the unhappiness) out”. Apart from expressing themselves with their mothers, some respondents (n = 5) said that they wanted to share their distress with their good friends. However, they said it was difficult to do this, as their friends were busy with school “stuff”. Some respondents (n = 3) mentioned that they would like to talk to other children whose experiences were similar because these children would be able to understand how they felt. Some respondents (n = 3) also stated that they wanted to share their distress with the doctors and nurses, who as professionals, would not judge their experience.Several respondents (n = 6). This point was illustrated by Respondent C12  as follows: “They [my parents] are very upset about my disease. How can I tell them that I am unhappy? I don’t want to make them more upset because of me”. Some respondents also said that they wanted to pretend they were strong to comfort their parents and did not therefore mention their distress. Respondent C9  gave the following explanation: “After I was diagnosed with cancer, my mom didn’t eat and drink. She is completely fed up. That’s why I need to be strong even when I am sad. I am the only one who can comfort her”. Moreover, some respondents felt that their parents did not understand how they felt and so they did not want to share their feelings: “I am the one who undergoes surgery. I am the only one who feels the pain. No one can understand what I have endured, not even my parents. I would rather keep quiet” .Although some respondents said that they wanted to share their distress with their parents, they hesitated to do so because they did not want to burden their parents with more troubles (n = 22) expressed the need to receive support from those around them, including their parents, friends, and healthcare professionals. This support made them feel loved and motivated them to continue the treatment. In addition, the support could manifest in different ways, such as spending time together, sharing snacks, and hearing some encouraging words. Some respondents (n = 8) noted that even trivial things were enough to make them feel happy and supported, as illustrated by the following statement:During the interviews, all of the respondents .n = 6) said that they wanted to be treated as adults and preferred to hear the truth:Although all of the respondents mentioned the need for support, some n = 18) said they were unable to maintain these friendships in the same way as previously. Specifically, some said (n = 7) they have greatly reduced contact with their friends because of their medical condition. Respondent C22  explained this situation as follows:Despite stating that their friends and classmates were important sources of support, the majority of respondents  also stated that they had tried to keep up their friendships with their classmates. However, they had little in common and so they ran out of conversation topics quickly. Respondent C19  made the following remark:Some respondents  even stated that they did not want to meet their friends as they did not want to be teased about their changed appearance, particularly their loss of hair. Respondent C7  stated: “My hair was very short. I am a girl. I worried that they [my friends] would make fun of me because of my odd looks. I don’t want to find them”.Some respondents (n = 5) said that they wanted to do something for others. Thus, they felt that their lives were still meaningful. Respondent C19  shared the following experience:Although most respondents noted that they had to be taken care of by others throughout the disease trajectory, some  stated that religious beliefs played a very important supporting role, helping them to cope with the disease. When they were scared or upset, they would engage in religious practices to gain power from the gods. They believed that they were protected, and this feeling gave them considerable relief. Respondent C2 , whose mother was Buddhist, stated: “I chant the scriptures with my mom every morning and night. The blessing from Buddha makes me feel relieved. The Buddha will be with me and protect me. I don’t feel scared when I chant”. Those respondents (n = 5) who lacked religious beliefs sought protection from other sources, including the zodiac and ancestors:A few respondents .n = 5) stated that fictional characters in comics, cartoon films, movies, and games were brave and overcame challenges. Therefore, they wanted to learn from these characters and be strong so as to fight the disease. This view was illustrated by Respondent C16  as follows:Apart from seeking protection from gods and supernatural powers, some of the respondents  instrument is widely used to measure spiritual well-being in individuals with cancer and other chronic illnesses . This toSecond, the need for hope was found to be a key source of support for Chinese children with cancer to overcome the pain and suffering that resulted from the disease and to motivate them to continue the treatment throughout their cancer trajectory. As such, providing hope to children with cancer seems to be an appropriate and feasible strategy for addressing their spiritual needs. Hope-centered therapy has been widely used to enhance hope and to promote the spiritual well-being of adult patients with cancer ,69. ThisNotwithstanding the originality of the study, there were several limitations that warrant attention. First, this study only aimed to elicit a general description of the spiritual needs of Chinese children with cancer. Hence, we did not apply theoretical sampling to determine whether the children’s spiritual needs could change and how they may do so depending on the illness trajectory. Second, because of ethical considerations, we did not interview those who were terminally ill, thus avoiding potential psychological distress caused by the interviews. This gap undermined the generalizability of our findings and their applicability to Chinese children with terminal cancer. Third, we did not completely distinguish mental health and social health issues from spiritual issues when reporting our findings. This is because, according to the previous literature, spirituality is a concept intertwining with both psychological and social health ,72. A coThis study addressed gaps in the existing literature by exploring the spiritual needs of Chinese children hospitalized with cancer. Their spiritual needs were categorized into four domains derived from qualitative descriptions: the need for self-exploration; inner needs; the need for connections to others; and the need for connections to gods, supernatural powers, and fictional characters. Culture was found to play a significant role in influencing the spiritual needs of Chinese children with cancer. Therefore, culturally specific interventions should be developed and implemented in the context of end-of-life care to improve their spiritual well-being.


The concept of equivocality was at the core of the narratives shared among participants, with uncertainty emerging as a meta-theme across all focus groups. The findings of this study should prove useful for those who are developing messaging to combat mis/disinformation and overcome mis/distrust with the medical system and government institutions among those who are disenfranchised.During the COVID-19 pandemic in the United States, those involved with the criminal legal system experience disproportionate vulnerability to infection, transmission, and mortality, facing additional systemic barriers due to criminal legal involvement (CLI) . We use Weick’s (1979) model of sensemaking as a theoretical framework to inform our examination of CLI individuals’ experiences during the pandemic. The primary objective of this paper is to explore the process of sensemaking amid misinformation, trust/mistrust, and vulnerability during the pandemic among CLI communities in three central states . We conducted seven online focus groups ( Marginalized and minoritized communities in the United States face exacerbated health disparities during the COVID-19 pandemic. Individuals identifying as Black, Indigenous, Hispanic, Latinx, or Pacific Islander experience higher COVID-19 hospitalizations and death rates than other racial groups ,3,4,5. TAt the end of 2020, about 5,500,600 people were involved in the US criminal legal system, including 1,691,600 incarcerated in federal prison or local jail and 3,890,400 on probation or under parole supervision . Racial Among the health disparities faced by individuals involved in the criminal legal system, those in federal or state prisons are 1.5 times more likely to report having a chronic condition such as asthma, heart disease, or diabetes; have a higher rate of transmission of infectious disease; and are more likely to experience mental health issues, psychological distress, and substance abuse disorders when compared to the general US population . These hIn May 2020, the World Health Organization (WHO) declared the pandemic a global health crisis, escalating from the declaration of a public health emergency of international concern three months prior . This crIn December 2020, the CDC began recommending COVID-19 vaccinations to those 16 years and older as the best means of protection. Additionally, hesitancy toward the COVID-19 vaccines added another barrier to the uptake of CDC recommendations. In 2020, researchers conducted a study within correctional and detention facilities across four states and found that 45.4% of people who participated stated they would refuse a COVID-19 vaccine if it were offered to them and 9.7% shared they would be hesitant to receive it . The samdisinformation. Distinguishing the two, Rubin argues that “misinformation is unintentional and includes errors or inaccuracies, while disinformation is deliberately deceptive, false or misleading”  deliberate attempts to disseminate wrong information to undermine the public health response and advance alternative groups of individuals” , para. 2The disproportionate effects of COVID-19 risk exposure and the impacts of misinformation and disinformation may be understood critically by examining the way structural systems are connected to material resources. Societal structures such as medical services, jobs, transportation, food, shelter, and other systems are dependent on individual access to material resources . In relaAn indirect harm that marginalized populations, including those with criminal legal involvement, face as a result of socioeconomic barriers is structural violence. According to Farmer et al., the roots of structural violence “are embedded in the political and economic organization of our social world; they are violent because they cause injury to people ” , p. 1686Structural violence is also situated within the historical context of harm perpetrated by medical authorities against vulnerable communities ,30,31. MAs the pandemic evolves and remains unpredictable, uncertainty is a collective global experience. We define uncertainty as not having enough information about a situation to formulate an expected outcome . The desCentral to Weick’s Model is the concept of information equivocality, which asserts that increased information about a health issue may reduce ambiguity and uncertainty. Some health issues are more equivocal in nature, and the magnitude and global devastation of COVID-19 present unparalleled levels of uncertainty. Consequently, with less equivocality or uncertainty, individuals are able to manage a health threat with clear, effective coping strategies and achieve better outcomes. In health communication scholarship, the model explores the organization of healthcare services, differing levels of care and relationships within these systems, and how patients make sense of diagnoses ,44,45,46Understanding how people navigate information and decision making around COVID-19 requires acknowledging uncertainty as the backdrop of the sensemaking process. As Maitlis and Sonenshein indicate, “Sensemaking is thus about connecting cues and frames to create an account of what is going on” , p. 552.The current study provides a qualitative exploration of the experiences of people who have been involved with the criminal legal system at any point within the previous five years to understand COVID-19 effects on their lives ‘outside’, with a specific interest in how they navigate and protect themselves amid continuously evolving information about the pandemic. Already more vulnerable to the intersections of systemic inequalities, CLI individuals experience unique risks around misinformation. This study explores the lived experiences of CLI communities as they make sense of information and misinformation surrounding COVID-19. The present study extends scholarship about misinformation, trust, and mistrust and how communities who experience socioeconomic vulnerabilities interpret and make sense of a global health crisis.Highlighting the meanings CLI individuals make about the influx of competing information as well as how sensemaking is practiced in their health decision-making, this study poses the following research questions:RQ1: How do CLI individuals make sense of misinformation/disinformation in the context of COVID-19?RQ2: What are the narratives of trust/mistrust in the context of COVID-19 among CJI individuals?RQ3: How do socioeconomic and structural vulnerabilities intersect in CLI individuals’ experiences during the COVID-19 pandemic?The primary objective of this paper is to explore narratives of misinformation, trust, and mistrust during the pandemic among CLI communities in three central states . We collected data through seven online focus groups for an in-depth exploration of the target communities’ experiences and narratives of COVID-19 . We desiParticipants were recruited from four counties across the three states—West Cook County and South Cook County, Illinois; Baton Rouge, Louisiana; and Pulaski County, Arkansas—based on partnership with hospitals and Federal Qualified Clinics (FQCs) at these geographic locations. These sites were advantageous as relationships between hospital or FQC staff and people with criminal legal histories supported effective recruitment within strict time frames. Following Institutional Review Board approval, the research team conducted seven online, synchronous, mediated focus groups between December 2020 and January 2021. Each group included four to ten participants and lasted approximately 90 min.Participants were recruited by staff from participating sites and via snowball sampling as we encouraged prior participants to share flyers with their networks. Each of the sites had a community liaison who assisted with referring potential participants and posting flyers in identified locations. Flyers were distributed at reception when individuals entered FQCs, at individual meetings with the community liaisons, in public places such as FQC waiting rooms, and through advertisements sent out via FQC social media accounts. Only those who were interested in participating in the study continued with the screening process. To qualify to participate in the focus group, those who were interested were asked a screener question, “Have you been to jail, prison and/or on probation/parole within the last five years?” If participants said yes, they were sent an email or text message to join the study. Forty-four of those recruited participated in the study.SD = 5.4), 4.2 times in jail or prison (SD = 5.2), and 2.0 times on probation or parole (SD = 1.9). At the time of the focus group, 29 participants (65.9%) had tested for COVID-19 at least once.  were located in Illinois, with the remaining participants divided between Arkansas (29.5%) and Louisiana (22.7%). A majority of participants identified as men (54.5%), 13 (29.5%) as women, and four as “another gender” (9.1%). Most participants (36) were between 18 and 30 (45.5%) or 31 and 44 (36.4%) years old. Participants self-identified as predominantly Black or African American , including five individuals noting Hispanic or Latinx ethnicity. In terms of CLI experience, the sample reported an average of 5.6 arrests  with the 15 higher-level codes. Results indicated high intercoder reliability overall with Krippendorf’s alpha (α = 0.91) . The codUsing interpretative narrative analysis, themes were abductively defined based on a thorough examination of the codes about the participants’ experiences during the pandemic . Throughmisinformation and disinformation—where participants discussed what they perceived to be accurate and false information about the pandemic; (2) trust and distrust—where participants described both formal and informal sources of information and the degrees to which they trusted and distrusted them; and (3) community vulnerability—where participants identified their own ‘community’ and discussed its complex vulnerability to COVID-19 based on CLI, socioeconomic status, and/or structural racism. Each theme appeared across all focus groups and among most participants, and the meta-theme of uncertainty  was reflected throughout all three themes. Our data also suggested an underlying concern over uncertainty management through sensemaking, which will be addressed further in the Three themes were identified based on the research questions: (1) The first theme illustrates participants’ awareness of misinformation and disinformation pertaining to COVID-19, public health messaging about COVID-19, and overall knowledge about the virus. Participants expressed frustration around constant changes in information and shared their range of information sources, from healthcare workers to news outlets and, at times, social media. While participants shared some of the misinformation and controversial messaging surrounding COVID-19, they also intentionally noted that they did not believe some of the more eccentric messaging surrounding the pandemic, and many were quick to denounce some of the ‘conspiracy theories’. Arie shared:Some think that if you’re O positive that you can’t get it. Because your blood type has something to do with it. But if you’re O positive then you won’t get it, and I just don’t believe that…I heard it from my boyfriend. Okay. And he works for the state.Terry emphasized awareness of misinformation:Well, there’s a large portion of African Americans who are O positive. Yeah, that is the most common blood type, O positive, and if that were true, it wouldn’t be that many deaths.However, there were also instances where participants showed strong belief in misinformation. The following quote demonstrates misinformation about COVID-19 and the newly developed vaccines:It was a simulation done on this...I think it might be population control, but then you know you don’t know what to believe. I do know they couldn’t possibly produce no rapid vaccine like this unless they already had a plan to have it in the making already.(Jordan)The focus groups occurred nine months following the CDC’s declaration of COVID-19 as a global pandemic, many participants were knowledgeable about virus symptoms and ways to reduce spread. However, some participants were incarcerated at the time of declaration and when released lacked critical information about the nature of the pandemic. Well, I just recently came home. I was in a halfway house but before I came to the halfway house I was in jail. And the guy he was making masks and he kept asking me, ‘Hey you want a mask man?’ and I asked, ‘What I want a mask for?’ and he was like, ‘Man, the corona.’ And I was like, ‘What’s corona?’ and he said the President said something about corona. So, I didn’t really think nothing of it, then one of the ladies, one of the guards came into work and was like, ‘It’s here.’…When it first came, I thought it was a joke, but when people start dying, I was like this shit serious.(Thomas)In the face of limited knowledge, participants expressed uncertainty about information sources and about changing guidelines. The struggle to sort through inconsistent information is highlighted in the following quote by Earl who attended a late-January focus group:First, it went from not wearing no mask to one mask to now they saying you have to wear two masks. …and I hear a lot of it [misinformation] coming from government-based officials and government-based medical personnel.In addition to uncertainty about inconsistencies or changes in health information, participants also shared uncertainty about the efficacy of the protective behaviors recommended by the CDC. Participants were knowledgeable about recommended protective behaviors but were not fully convinced that those behaviors would reduce exposure to COVID-19. While many participants felt that protective behaviors such as mask-wearing and social distancing were acceptable, there was greater hesitancy about the vaccines due to mis/disinformation. For example, Felton said: I think I’ll just take my chances on how I’ve been doing and stay social distance and keep that mask on and just try to stay...keep everything sanitized. I don’t have a bad immune system and my kids don’t either…we really been pretty much straight. I’m just not taking that vaccine. No, I’m not doing that!Participants worried about the feasibility of protective behaviors amid inconsistent implementation of these behaviors as a precaution. This was heightened for participants who were incarcerated at any point during the pandemic, as Jeremy noted:Everybody is not following the guidelines. They not wearing a mask and, you know, they want us to wear a mask but for some reason, I don’t know why they feel like they don’t gotta or like they won’t get it. I just don’t understand that. Where I was- I was locked up at, they want us to do it and stay six feet apart but they putting us right beside each other. So, I don’t understand that. Then, every day and every hour someone new is coming to jail. So... they not taking the proper precautions that I feel to stop the COVID spread.The second theme highlights the uncertainty participants experienced as they navigated trust and distrust about COVID-19 overall, vaccines, and information sources. A lack of faith in the government, rooted in historical mistreatment and present systemic barriers, was evident. Suggestions and recommendations for COVID-19 safety changed regularly, further fueling mistrust in the government and other authorities such as the CDC. As a result, participants expressed mixed feelings about the motivations of these sources. Derrick shared the following comment about immunologist, Dr. Kizzmekia Corbett, a Black woman researcher who made important contributions to the development of the Moderna vaccine :I just seen they [CDC] put something out where it’s an African American Black lady helping find a cure and it feels like to me y’all are pretty much, I don’t want to say they think we’re stupid, but they trying to coerce us and pander to us, “Oh, we got a Black lady.” And it’s just really funny how the virus is affecting the African American, Latino, and minorities even more, and they’re saying the preexisting conditions, but, you know, at the same time…it’s just one of those things where it kind of seems like it was calculated.Clearly, uncertainty about the motivations of the government both arose from and exacerbated the perceptions of mistrust or distrust. Some participants shared that choosing African American spokespeople to encourage vaccination did not help to reduce fears based on historical reasons for mistrust. The deep connection between perceived vulnerability and historical mistreatment and systemic barriers was evident in the following quote:Let me say this again. That’s why a lot of us [Black people] don’t trust the government…this goes along with our other stuff, the Tuskegee experiment and all this other stuff that’s been happening to people like that, then you gotta do your own research and things like that, because them son of a guns is slick and trifling…The police shooting all these people and all this stuff, then covering it up and ain’t getting punished for it. So come on now.(Dante)The above quote illustrates the ways in which historical and political contexts influenced participants’ current experiences. Moreover, participants discussed the lack of trust in the political climate, including media reporting on the pandemic.“And I hate to say it like this, but from the President [Trump] really...the truth...You know, people don’t believe nothing he say...so everyone’s like, ehhhh, I don’t know. He was in office when it came through. I don’t know. It’s kinda iffy. Nobody trusts the news like the way they used to. We used to go to the news or read the newspaper for real news...now you don’t even believe it. You think it’s a conspiracy and all that.”(Toni)As more information about COVID-19 vaccines became available, participants found themselves reasoning through this information and trying to identify underlying motivations. They were often skeptical and tried to make sense of the urgency of vaccine development based on their perceptions about the government’s response to other public health issues that has negatively impacted their community, such as sickle cell anemia. Timothy shared:Yeah, I think it’s about money, you know, the government is in, you know, the health industry is about money and it’s like, y’all don’t have a cure, but y’all got a vaccine this quick when we got like other diseases. Sickle cell or other things that we have not, you know, been able to find any type of help with and all the sudden COVID comes out and then within months there’s a vaccine so it’s just really, really fishy to me.While trust in government and medical authorities was relatively low, participants expressed high trust in some alternative sources. Derrick referred to a controversial but well-known herbalist in the Black community, Dr. Sebi , as a reason to endorse homeopathic alternatives to the vaccine:As melanated Black people, one thing that Dr. Sebi taught us is that a virus or sickness cannot live in an alkaline body...if you keep your body in an alkaline state, you’d be very difficult to catch and be susceptible to stuff so one quick tip, you can make your own alkaline water. Get you some lime and cucumber, cut it up in there, drink that. And, you know, drink a lot of teas at least, but research that and we can all get through this.The last theme focuses specifically on participants’ vulnerability in relation to intersecting identities or social categories . For most, their vulnerabilities were centered around racism and other forms of socioeconomic oppression. Not having adequate income due to COVID-19 disruption, for example, influenced participants’ attitudes toward protective measures and distrust in the government. Even though participants may have been fearful and indicated mistrust of government institutions, they also recognized that this is a worldwide life and death event and therefore they were inclined to follow the recommended procedures such as testing, to continue to protect themselves and others. For example, Sharrell shared their concern for their parent:It’s more scary than anything for me because if I contracted it and give it to my mom or something like that. Like, that’s where my fear is right now…Yeah, the six feet thing, washing hands, spraying Lysol, you know, I’ve heard everything from that to just staying inside. So, um, my biggest thing is just learning more about what we can do to prevent it and staying safe.Jonathan believed that COVID-19 was intentionally placed within marginalized communities, sharing their inability to access healthcare due to income barriers:I think they make sure they put it [the virus] in the smaller minority areas where people don’t have that much healthcare. You don’t go to the hospital because they don’t have the money to go to the hospital…You’ll just drop off and they’ll be like, you know, “Okay, it’s less people we have to worry about now. Okay we’re gonna put it out there with a couple of celebrities so they get it or whatever,” but they okay because they got the money to pay for the healthcare but on the other note everybody else. Y’all just have to wing it.Social and economic disruption due to COVID-19 were most acutely felt by those who did not have the option to work from their homes or to not work at all. As a result, participants were left to figure out a way to continue their lives amid the disruption in order to survive. Participants pointed to economic challenges including a lack of housing or phone access as barriers to getting the correct information.Brandi described the pressures of losing her job, caring for her children, and the reality of losing people to COVID-19:Prior to COVID I was doing okay. I ended up getting laid off…I was sitting with a client that was bed bound and I was basically like his direct service worker…she [the employer] didn’t have the money to pay us. I just started driving for Amazon...and it’s like, I’m finally kind of getting back on top of things, like bills and all of that stuff is getting behind. I have two kids…So, it’s like everything is on me. I was like, really stressed out behind it. I personally knew a few people that died from COVID. From the jump, I believed it was real.A majority of participants did not identify CLI as a key aspect of their social identity that made them more susceptible to COVID-19. However, the exception would be participants who were incarcerated or in transitional housing during the pandemic. In those cases, participants emphasized increased vulnerability to contracting COVID-19. Gary recalled:The county [jail] is already overcrowded to capacity and they’ve had to release a lot of people...but at the same time, they really don’t give a damn...They treat you like animals and dogs anyway, so I’m sure they’re not being proactive about it...I don’t want to say that they’re using this to kill us, but they could care less. They’re like, “Oh, well that’s just another criminal that I don’t have to worry about.”Experiences of disruption, incarceration, death, and trauma related to COVID-19 influenced the ways participants understood their vulnerabilities. The difficulties of navigating the pandemic within participants’ life environments were highlighted in their stories about family, community, and the impacts that COVID-19 might have long-term. While making sense of uncertainty is not an easy task, many participants found motivation through spirituality, often referring to a higher power helping them to make it through these difficulties. Previous experiences with substance use disorder or CLI status also influenced attitudes toward resilience.I’m actually a recovering addict and if I didn’t let the drugs and alcohol kill me, then I’m not gonna let a pandemic kill me, you know? And God’s got my back. So I stay prayed up and I do what I have to do every day, you know, and I live day by day in recovery and the addiction is way worse than a pandemic and I take the precautions that they tell me to take, exactly like the precautions that I’ve taken in my recovery. So I stay prayed up and I do what I have to do every day.(Elias)Additionally, the focus group itself served as a meaningful mechanism for shared sensemaking. Sherri’s statement sums up common sentiments of how sharing narratives could lead to potential behavioral change:I want to thank you guys too because it was a great opportunity…I learned a lot of things. I might just go take a test tomorrow...It’s the words of encouragement. Like the lady told me she had a family member who had diabetes and came out like a champ. And he had it, his mother had it and everything was cool. I mean just the faith, of God I guess. So I don’t know, maybe I might go get a test soon. Y’all just pray for me!misinformation and disinformation, (2) trust and distrust, and (3) community vulnerability. The first theme of misinformation and disinformation reflects the a priori objective of this study, based on prior scholarship surrounding pandemics and misinformation. Weick’s sensemaking theory proposes three stages for organizing to reduce equivocality in health contexts: (1) the enactment phase , the process where individuals begin to understand the health challenge and to assign meaning; (2) the selection phase, the process of selecting which course of action to take in response to the health challenge; and (c) the retention phase, the process of reflecting on the enactment and selection phases to guide future behavior [uncertainty emerging as a meta-theme representing how all three themes are interlinked. Our results reveal that participants engaged in sensemaking processes based on experiences of belonging to disenfranchised and minoritized communities.This study explores the lived experiences and narratives about COVID-19 among individuals with CLI. Results clustered around three themes: (1) behavior . Our datAlthough the study targeted those with recent criminal legal involvement, the majority of our sample was Black participants, which speaks to the intersecting challenges exacerbated by the pandemic based on race, socioeconomic status, and CLI impact. Consequently, most of the participants indicated that belonging to a racially minoritized group impacted their perceived risk of infection with COVID-19 and their mistrust of the vaccine. Throughout the focus groups, participants alluded to having been through difficult times before based on intersecting experiences of the legal system, socioeconomic inequity, and racial discrimination. As a result, they were able to hold a perspective of resilience and perseverance by pushing through in the midst of the uncertainty about the pandemic.The results of this study clearly outline the process of reducing uncertainty during the pandemic among those involved with the criminal legal system. Weick’s model identifies three stages in the uncertainty management process, namely enactment, selection, and retention; and all three stages were illustrated in the focus group findings. The focus group discussions often began with the enactment and bracketing of various types of information about COVID-19. From the initial alerts of COVID-19 as a global pandemic, there was mystery and confusion surrounding the source and transmission of the virus, ways in which infection could occur, and preventative measures that should be taken. Participants had an acute awareness of misinformation, disinformation, and even conspiracy theories that were spread throughout their communities and social networks. These forms of misinformation connect to recent studies about the fears of historical racist exploitation within the scientific community and healthcare system ,57. WhilWe also observed the presence of an “infodemic” created an environment that exacerbated equivocality, leading to a heightened sense of mistrust and greater barriers in the selection phase of organizing information. Participants indicated an overload in trying to select which information to trust to make an informed decision about the health of themselves, their loved ones, and their communities. The misinformation theme is compounded by the lack of trust that members of criminal legal impacted communities have in scientific and government institutions. During these discussions of mistrust and distrust, fears of anticipated negative effects of COVID-19, testing, vaccinations, and long-term impacts were also expressed. As the pandemic progressed, uncertainty also evolved and shifted. For example, as more information about COVID-19 transmission became available, participants became increasingly knowledgeable about transmission and made sense of the fear they had because of that knowledge. As mandates changed and vaccines were developed, participants found themselves making sense of those shifting uncertainties and associated fears through the integration of new knowledge and reinterpretation of past and current experiences.Interestingly, participants engaged in the selection phase not only relied on their own knowledge and trusted information sources, including local healthcare providers; but they also used focus groups as an opportunity to enhance sensemaking, actively engage in conversation, and share their own experiences. Participants were selective in which information they trusted, based on personal experiences with sources, and frequently inquired about the moderators’ beliefs and trusted sources for accurate information. However, experience with the criminal legal system intensified mistrust among participants that belonged to a racial minoritized community. Therefore, the impact of the criminal legal system intersected with participants’ mistrust and reinforced the fears behind believing messages even from “reputable” sources, such as the CDC and Dr. Kizzmekia Corbett. Thus, this study provides nuance to the conceptualization of trust and distrust among Black and CLI communities toward public health organizations.Furthermore, this study provides insight into the retention phase of sensemaking, which is described as deciding on the action to take next or health behavior . EconomiThe alignment of our findings with Weick’s perspective on equivocality reduction suggests that the sensemaking process during the COVID pandemic and practices in the CLI communities during the pandemic are inherently systematic, but also complicated . Our stuThere are a few limitations to note. This study recruited those with CLI experience at any point within the previous five years. Future studies should identify differences in experiences based on timing and length of incarceration in relation to participation in the study. Additionally, while the ability to meet virtually allowed for the study to occur during a time of restricted and limited travel, reliable internet access was not always available. During recruitment, a secure space for participants was offered for some of the FQC and clinic sites but not all. Potential participants without personal internet or Zoom access might have felt discouraged from participating. While we did not segregate focus groups based on location, different policies that were mandated based on state regulations  could have introduced heterogeneity in participant experiences and perspectives.A critical strength of this study is its unique sample, which allowed for the centering and close examination of the experiences of a key marginalized group. The qualitative design of the study allowed for a deep analysis of the intersectional vulnerabilities of the study population, providing novel evidence of the complex and nuanced ways in which misinformation and mistrust could impact perceptions and behaviors among CLI communities. Finally, utilizing the Zoom platform provided an effective and feasible way to gather qualitative data. Participants were fully engaged and viewed the focus group as a source of social support, realizing that they were not alone in managing the uncertainty of the pandemic. We suggest that future studies explore the methodology of focus groups as an intentional space of sensemaking.Future studies should engage more with this population to understand the intersections of risks and vulnerabilities. Although many protective behaviors were recommended to reduce the spread of COVID-19, marginalized populations were disproportionately affected. As stated by Bowleg, “COVID-19 reveals disproportionate risk and impact based on structured inequality at intersections of racial/ethnic minoritized status and class, as well as occupation” , p. 917.This study explored experiences with mis/disinformation, mistrust, and vulnerability among those who were impacted by the criminal legal system. The unprecedented nature of the COVID-19 pandemic resulted in widespread and persisting uncertainty. The political polarization of the pandemic and viral racial reckoning added to the equivocality of the times. Exploring the process of sensemaking from the perspectives of the multiplicity of vulnerabilities faced by CLI communities can lead to translatable insights for public health interventions. This study demonstrates how those who are considered most vulnerable—CLI and minoritized populations—pursue sensemaking amidst misinformation and mistrust, especially given prior experiences that serve to disengage the population. Results in this study connect to the “strategic trust” that Black communities utilize during a public health crisis , indicat