Managing children's asthma: what role do caregivers' mental representations of trigger and symptom management behaviors play?

OBJECTIVE: Pediatric asthma management is challenging for parents and guardians (hereafter caregivers). We examined (1) how caregivers mentally represent trigger and symptom management strategies, and (2) how those mental representations are associated with actual management behavior. METHODS: In an online survey, N = 431 caregivers of children with asthma rated 20 trigger management behaviors and 20 symptom management behaviors across 15 characteristics, and indicated how often they engaged in each behavior. RESULTS: Principal components analysis indicated 4 dimensions for trigger management behaviors and 3 for symptom management behaviors. Bayesian mixed-effects models indicated that engagement in trigger management behavior was more likely for behaviors rated as affirming caregiver activities. However, trigger management behavior did not depend on how highly the behavior was rated as challenging for caregiver, burdensome on child, or routine caregiving. Engagement in symptom management behavior was more likely for behaviors rated as affirming and common and harmless to the child, but was unrelated to how highly a behavior was rated as challenging for caregivers. CONCLUSION: These results suggest that interventions might be particularly useful if they focus on the affirming nature of asthma management behaviors. However, such interventions should acknowledge structural factors (e.g. poverty) that constrain caregivers' ability to act.

Exploring Caregiver Interest in and Preferences for Interventions for Children With Risk of Asthma Exacerbation: Web-Based Survey.

BACKGROUND: Maintaining control of asthma symptoms is the cornerstone of asthma treatment guidelines in the United States. However, suboptimal asthma control and asthma exacerbations among young people are common and are associated with many negative outcomes. Interventions to improve asthma control are needed. For such interventions to be successful, it is necessary to understand the types of interventions that are appealing to caregivers of children with different levels of risk of exacerbation. OBJECTIVE: This study aimed to evaluate whether caregivers of children with high (vs low) risk of asthma exacerbation show different levels of interest in and preferences for potential intervention programs and delivery methods. METHODS: We contracted with Ipsos to administer a web-based survey to caregivers of children with asthma who were residing in the United States. Caregivers (N=394) reported their interest (1=not at all; 3=a lot) in 9 possible intervention programs and 8 possible intervention delivery methods. Caregivers also indicated their preferences by selecting the 3 intervention programs and 3 delivery methods that "most" interested them. Finally, caregivers completed 2 open-ended questions asking what other resources might be useful for managing their children's asthma. We classified children as having a high risk of exacerbation if they had an exacerbation in the past 3 months (n=116) and a low risk of exacerbation if otherwise (n=278). RESULTS: Caregivers reported higher levels of interest in all intervention programs and delivery methods if they cared for a child with a high risk rather than a low risk of exacerbation. However, regardless of the child's risk status, caregivers expressed the highest levels of interest in programs to increase their child's self-management skills, to help pay for asthma care, and to work with the school to manage asthma. Caregivers expressed the highest levels of interest in delivery methods that maintained personal control over accessing information (websites, videos, printed materials, and smartphone apps). Caregivers' preferences were consistent with their interests; programs and delivery methods that were rated as high in interest were also selected as one of the 3 that "most" interested them. Although most caregivers did not provide additional suggestions for the open-ended questions, a few caregivers suggested intervention programs and delivery methods that we had not included (eg, education about avoiding triggers and medication reminders). CONCLUSIONS: Similar interests and preferences among caregivers of children with high and low risk of exacerbation suggest a broad need for support in managing childhood asthma. Providers could help caregivers by directing them toward resources that make asthma care more affordable and by helping their children with asthma self-management. Interventions that accommodate caregivers' concerns about having personal control over access to asthma information are likely to be more successful than interventions that do not.

How are mental representations of asthma triggers and symptoms related to interpersonal risk perceptions? A psychometric investigation of caregivers of children with asthma.

OBJECTIVE: Parents and guardians (hereafter caregivers) make decisions for their children's medical care. However, many caregivers of children with asthma struggle to understand their child's illness. We used the psychometric paradigm to investigate how caregivers conceptualize, or mentally represent, asthma triggers and symptoms and how these representations are linked to perceived asthma exacerbation risk. METHODS: We asked 377 caregivers of children with asthma across the U.S. to rate 20 triggers or 20 symptoms along 15 characteristics. Caregivers also indicated their perceived risk of their child having an asthma exacerbation (hereafter interpersonal risk perceptions). Using principal components analysis, we extracted key dimensions underlying caregivers' ratings on the characteristics. Then we related the triggers' and symptoms' scores on the dimensions to caregivers' interpersonal risk perceptions. RESULTS: Interpersonal risk perceptions were higher for triggers with high ratings for the dimensions severe and relevant, and negative affect-yet manageable, but not chronic-yet unpredictable. Risk perceptions were also higher for symptoms with high ratings for the dimensions severe and unpredictable, and relevant and common, but not self-blame or manageable despite unknown cause. CONCLUSION: By identifying key dimensions underlying caregivers' mental representations of asthma triggers and symptoms, these findings can inform a new approach to asthma education.

Linking cognitive and affective heuristic cues to interpersonal risk perceptions and behavior.

People often use cognitive and affective heuristics when judging the likelihood of a health outcome and making health decisions. However, little research has examined how heuristics shape risk perceptions and behavior among people who make decisions on behalf of another person. We examined associations between heuristic cues and caregivers' perceptions of their child's asthma risk, the frequency of caregivers' asthma management behaviors, and child health outcomes. We used Ipsos KnowledgePanel to recruit 814 U.S. adult caregivers of children with asthma of the age <18 years. Participants completed a survey at baseline (T1) and 3 months later (T2). Caregivers who, at T1, reported greater negative affect about their child's asthma (affect heuristic cue), greater ease of imagining their child experiencing asthma symptoms (availability heuristic cue), and greater perceived similarity between their child and a child who has ever experienced asthma symptoms (representativeness heuristic cue) reported statistically significantly (p < 0.05) higher interpersonal perceived risk of their child having an exacerbation or uncontrolled asthma at T1. They also indicated at T2 that their child had poorer asthma control and more frequent exacerbations. Greater T1 negative affect was associated with more frequent T2 actions to reduce inflammation, manage triggers, and manage symptoms, and with poorer T2 child health outcomes. Heuristic cues are likely important for interpersonal-not just personal-risk perceptions. However, the interrelationship between caregivers' ratings of heuristic cues (in particular, negative affect) and risk judgments may signify a struggle with managing their child's asthma and need for extra support from health care providers or systems.

Psychometric properties and predictive validity of the PP-ACT.

OBJECTIVE: The Parent Proxy Asthma Control Test (PP-ACT) is a self-report measure of asthma control completed by caregivers on behalf of a child. We examined the psychometric properties and the reliability and predictive validity of the PP-ACT. METHODS: We conducted two studies (one cross-sectional, one longitudinal over three months) that surveyed caregivers (N = 1622) of children with asthma. Caregivers completed the PP-ACT and a variety of other measures, including child health outcomes. RESULTS: We found clear evidence that the five-item PP-ACT assesses two distinct constructs: Items 1-4 (which we call the PP-ACT4) assess symptoms, impairment, and use of a short acting beta-2 blocker (albuterol); Item 5 assesses caregivers' global subjective assessment of their child's asthma control. In addition, the two constructs function as unique predictors of asthma outcomes. Both the PP-ACT4 and Item 5 predicted unique variance in ED visits, the number of symptom-free days, and child quality of life. Only the PP-ACT4 predicted frequency of ICS use and only at Time 1 in Study 1. Conversely, Item 5 predicted exacerbation frequency whereas the PP-ACT4 did not. CONCLUSION: Our findings suggest that researchers and clinicians should treat the PP-ACT4 and Item 5 as distinct indicators of asthma control because they differentially predict asthma outcomes and likely have distinct meanings to caregivers.Supplemental data for this article is available online at https://doi.org/10.1080/02770903.2022.2036755 .

I don't know my child's asthma risk: evidence against satisficing as an explanation for 'don't know' responses.

Several studies suggest that "don't know" (DK) responses to risk perception items may represent meaningful expressions of uncertainty about disease risk. However, researchers are often discouraged from including a DK response option in survey items due to concerns about respondents overusing it to minimize cognitive effort-a phenomenon often referred to as satisficing. Our objective was to investigate whether patterns of DK responses to risk perception survey items were consistent with satisficing behavior. We conducted a secondary analysis of survey data from 814 parents and guardians (hereafter caregivers) of children with asthma. Caregivers answered 18 items assessing their perceived risk of their child experiencing two types of poor asthma outcomes: asthma exacerbation, and low asthma control. We examined differences in the frequency and distribution of DK responses across all 18 items and by type of risk perception item (i.e., 2 vs. 5 response options, absolute vs. comparative risk). We found that 32% (n=548) of respondents marked DK at least once. Of the 266 caregivers who provided any DK response, most did so for only 1 or 2 items (51.9%, n=138), and only 6% (n=15) answered DK to more than half of the items. Using random coefficient Poisson models, we found more DK responding for dichotomous absolute (30.1%) than ordinal absolute items (5.3%), b=1.72, p<.001. We also found fewer DK responses to the ordinal absolute items than the comparative items (8.2%), b=-0.49, p<.001. Using Chi-square tests, we found that inattentive responding was not associated with responding DK. Our findings suggest that satisficing is unlikely to completely explain DK responding to perceived risk survey items. Researchers who exclude DK response options from risk perception survey items may obtain an incomplete understanding of their study sample's beliefs about risk.

Caregiver Perceptions of Change in Pediatric Asthma Control During the COVID-19 Pandemic.

Purpose: Although several indicators suggest that pediatric asthma control in the United States improved early in the pandemic, other indicators suggest not. Missing are reports from caregivers of the experiences of their children with asthma early in the pandemic. Methods: Using the PP-ACT and other measures that we specifically constructed for our research, we conducted a cross-sectional national survey of US caregivers of children with asthma (N=595) to examine perceived change in their child's asthma control and changes in reports of ED visits and use of emergency relief medicine and controller medicine pre-pandemic (January to March 2020) versus early-pandemic (June to September 2020). Results: Caregivers fell into three groups: most caregivers perceived that their child's asthma control was improved (50.3%) or unchanged (41.2%), and few reported worse control (8.5%). Surprisingly, all three groups of caregivers reported similar frequencies of early-pandemic and pre-pandemic ED visits and use of emergency relief medicine. Also surprising, caregivers who perceived their child's asthma as more controlled (compared with the other two groups) reported more frequent ED visits and use of emergency relief medicine, yet also more use of controller medicine at both early-pandemic and pre-pandemic. Conclusion: The mismatch between caregivers' perceptions of their child's early-pandemic asthma control and their reports of ED visits and use of emergency relief medicine suggests that caregivers may rely on a gist (a global evaluation that can include nonbiomedical evidence) when estimating their child's asthma control. Caregivers and their families could benefit from help from clinicians in understanding the discrepancy between subjective asthma control and asthma control indicators and in understanding what well-controlled asthma looks and feels like.

Waiting for medical test results: A delay discounting approach.

RATIONALE AND OBJECTIVE: Delay discounting is the devaluation of an outcome as a function of delay until receiving that outcome. In two studies, we used a delay discounting approach to examine how wait times for a medical diagnosis can affect people's decision to undergo medical testing. METHODS: In Study 1 (N = 151), participants rated the likelihood they would get tested for a severe and a mild disease with wait times ranging from 0 to 180 days (within persons). Study 2 (N = 400) randomized disease severity (severe vs. mild) between persons and manipulated disease curability (curable vs. incurable). RESULTS: Likelihood of testing decreased as delay until receiving test results increased. This effect of delay on testing was stronger for the mild than for the severe disease, and for the curable than for the incurable disease. CONCLUSIONS: We found strong evidence for a delay discounting effect, an effect that varied depending on aspects of diseases. The findings illustrate how delay discounting can affect screening uptake and how it is moderated by disease characteristics.

Interpersonal comparison among caregivers of children with asthma.

Objective: We examined the extent to which caregivers of children with asthma used interpersonal comparisons-a novel comparison process that parallels social comparison and temporal comparison-to form judgments about their child. Methods & Measures: Using semi-structured interviews adapted from the McGill Illness Narrative Interview, we examined the interpersonal comparisons that caregivers of a child with asthma (n = 41) made regarding their child. Results: Interpersonal comparisons influenced caregiver thoughts, feelings, and behavior. They helped caregivers distinguish asthma from other breathing problems, evaluate the severity of the asthma, and understand their child's experience. However, they also created uncertainty by highlighting the complex, unpredictable nature of asthma. Interpersonal comparisons were a source of gratitude and hope, but also worry and frustration. Finally, interpersonal comparisons influenced caregivers' decisions and actions, resulting in decisions that aligned with and, at times, ran counter to biomedical models of asthma care. In some instances, caregivers used interpersonal comparisons to motivate their child's behavior. Conclusion: The interpersonal comparisons served as a source of information for caregivers trying to understand and manage their child's asthma. Investigating these comparisons also expands how we think about other comparison theories.

Towards emplaced understandings of risk: How caregivers of children with asthma identify and manage asthma-related risk across different places.

In the United States, pediatric asthma is distributed geographically across lines of racialized segregation. We draw on emplacement, or the theory that embodied experiences and the material world are mutually informed, to situate such geographic trends within the narratives of 41 caregivers of children with asthma. Results suggest that caregivers identified and managed asthma-related risk with regard to the relational and structural conditions of three categories of locations: (1) houses, (2) neighborhoods, and (3) schools and other childhood institutions. Within each type of location, caregivers used emplaced knowledge and emplaced caregiving tactics to respond to asthma-related risk. Based on our findings, we identify critical intervention topics that are consistent with families' everyday lived experiences of place.

How do embodied experiences of asthma influence caregiver conceptual models?

RATIONALE: Many studies propose that patients', caregivers', and children's asthma management practices may diverge from biomedical recommendations because their understandings of asthma (i.e., conceptual models) are different from biomedical perspectives. However, little research in this area has examined conceptual models of asthma using embodiment theory, which suggests that caregivers' and children's experiences of the physical body shape their perspectives and consequent management strategies. OBJECTIVE: We investigated how two embodied processes of symptom perception-detection and interpretation-may influence caregiver or patient conceptions of asthma. METHODS: We interviewed 41 caregivers of children with asthma in Gainesville, Florida, and St. Louis, Missouri, and conducted ethnographic visits or virtual interviews with 19 children with asthma aged 6-16. RESULTS: Four aspects of asthma's embodied experience shaped conceptual models via processes of detection and interpretation: 1) symptoms are experienced in the context of other bodily processes; 2) acute symptoms and exacerbations are more salient than their absence; 3) the embodied experience of asthma is one of integrated physiological and emotional processes; and 4) caregivers and children acquire embodied practices of perceiving symptoms that produce embodied knowledge. CONCLUSION: Participant narratives suggest that embodied experiences of asthma shape caregivers' and children's understandings of asthma in ways that differ from the biomedical model. We argue that a focus on embodied experiences may provide important ground for mutual understanding and communication between providers and caregivers and/or patients.

Self-Esteem in 60 Seconds: The Six-Item State Self-Esteem Scale (SSES-6).

With 20 items, the State Self-Esteem Scale (SSES) can be cumbersome in settings that demand efficiency. The present research created an efficient six-item version of the SSES that preserves score reliability and validity and its three-dimensional structure: social, appearance, and performance self-esteem. Item response theory and confirmatory factor analyses identified the "best" six items-two from each dimension (Study 1). Participants completed the SSES four times at 2-week intervals (Studies 2 and 3). The six-item SSES' scores showed adequate test-retest reliability, explained substantial variance in trait-relevant measures, and showed convergent validity with related self-esteem measures. Participants completed the SSES and a laboratory experiment where they received negative feedback on an essay they had written and could retaliate against their evaluator by allocating hot sauce for them to consume (Study 4). The six-item SSES interacted with self-esteem instability in expected ways to predict hot sauce allocated.

Examining commonsense epidemiology: The case of asthma.

Commonsense epidemiology-how lay people think about diseases and their causes and consequences-can influence how people respond. We examined three lay epidemiological beliefs about 20 triggers and 19 symptoms among 349 caregivers of children with asthma. Our findings contradicted the prevalence-seriousness hypothesis (perceived prevalence and seriousness correlate negatively). The data partially supported the prevalence-control hypothesis (perceived prevalence and asthma control correlate negatively). We found weak support for the seriousness-control hypothesis (perceived seriousness and asthma control correlate negatively). These findings suggest boundary conditions on the application of commonsense epidemiological beliefs.

Guidelines for Conducting Virtual Cognitive Interviews During a Pandemic.

The COVID-19 pandemic has challenged researchers working in physical contact with research participants. Cognitive interviews examine whether study components (most often questionnaire items) are worded or structured in a manner that allows study participants to interpret the items in a way intended by the researcher. We developed guidelines to conduct cognitive interviews virtually to accommodate interviewees who have limited access to the internet. The guidelines describe the essential communication and safety equipment requirements and outline a procedure for collecting responses while maintaining the safety of the participants and researchers. Furthermore, the guidelines provide suggestions regarding training of participants to use the technology, encouraging them to respond aloud (a potential challenge given that the researcher is not physically present with the participant), and testing and deploying the equipment prior to the interview. Finally, the guidelines emphasize the need to adapt the interview to the circumstances and anticipate potential problems that might arise.

Perceptions of comparative optimism and perceptions of career success: Experimental evidence for a bidirectional effect.

Audiences generally view people who display more (versus less) comparative optimism more favorably. We explored whether audiences view a target who displays comparative optimism as more professionally successful, and conversely, whether they view a target who is more professionally successful as more comparatively optimistic. In Study 1, participants estimated the career success of a target that varied in level of comparative optimism. In Study 2, participants estimated the level of comparative optimism of a target that varied in career success. The results revealed that observers rated comparative optimists as likely to have successful careers, and rated people with successful careers as likely to display comparative optimism. Inferences about personal agency account for the bidirectional relationship.

Belief in a Loving Versus Punitive God and Behavior.

We examined the extent to which beliefs in a loving God and punitive God correspond with self-reported behavior in an online, longitudinal survey involving three waves of data collection, each separated by 6 months. Adolescents (N = 760) reported the extent to which they believed in a loving God and a punitive God (Times 1 and 3) and reported their engagement in benevolent (helping and forgiveness) and aggressive behavior (Times 2 and 3). Participants strongly endorsed a loving God but not a punitive God. In addition, belief in a loving God corresponded with reports of less aggressive and more benevolent behavior, whereas belief in a punitive God corresponded with more aggressive and less benevolent behavior.

Powerful audiences are linked to health information avoidance: Results from two surveys.

OBJECTIVE: We examined the extent to which community members avoid medical information that they may very much want, yet fear that others may use to harm them. METHODS: In two online studies, we surveyed participants (N = 659) about their experiences with insurer and employer harm, past avoidance of medical information, intentions to avoid medical information, and reasons for avoiding medical information. Study 2 was a conceptual replication of Study 1 with some minor variations. RESULTS: Several key findings emerged. 1) Although reports of past audience harm were relatively rare, reports of past avoidance were common, both for audience reasons and resource reasons. 2) Participants who were younger and who reported avoiding medical tests in the past (for audience or resource reasons) generally reported greater intentions to avoid health information in the future. 3) Participants reported that receiving unfavorable medical test results would elicit more harm from financially powerful audiences (health insurers and employers) than from interpersonally powerful audiences (close friends/family and others). 4) Participants indicated that the prospect of harm from an audience (i.e., negative effects on insurance coverage) rather than the prospect of bad news would dissuade them from seeking a medical test. Finally, 5) Participants reported that they were most inclined to avoid testing for medical conditions that were untreatable, unimportant, embarrassing/stigmatizing, or expensive. CONCLUSIONS: Findings demonstrate that people are concerned with audience perceptions of their health and these concerns may adversely affect decision making and behavior.

The role of powerful audiences in health information avoidance.

BACKGROUND: Although people may want to learn information, concerns about how audiences (persons or entities privy to one's behavior or information) might respond may motivate people to avoid information that audiences could use to threaten resources or harm them. PURPOSE: We examined whether powerful audiences prompt health risk information avoidance. METHODS: We tested in two studies (N = 843 adults 25 and older, 75% White) the influence of different audiences on medical information avoidance. We manipulated the audience and examined the consequences for avoidance of health risk information. RESULTS: Participants avoided personal health risk information significantly more when they believed that a powerful audience (an employer or insurance company) might learn their results from a health risk test than when they believed a non-powerful audience (health researchers) might learn their results. Exploratory mediation analyses revealed that these effects were partially mediated by participant expectations of likelihood of powerful audience harm. CONCLUSIONS: Results suggest that people may choose to remain ignorant of potentially important health risks if they believe that powerful audiences can use that information to harm them.

Understanding the Cognitive and Affective Mechanisms that Underlie Proxy Risk Perceptions among Caregivers of Asthmatic Children.

OBJECTIVE: Medical decisions made on behalf of another person-particularly those made by adult caregivers for their minor children-are often informed by the decision maker's beliefs about the treatment's risks and benefits. However, we know little about the cognitive and affective mechanisms influencing such "proxy" risk perceptions and about how proxy risk perceptions are related to prominent judgment phenomena. METHODS: Adult caregivers of minor children with asthma ( N = 132) completed an online, cross-sectional survey assessing 1) cognitions and affects that form the basis of the availability, representativeness, and affect heuristics; 2) endorsement of the absent-exempt and the better-than-average effect; and 3) proxy perceived risk and unrealistic comparative optimism of an asthma exacerbation. We used the Pediatric Asthma Control and Communication Instrument (PACCI) to assess asthma severity. RESULTS: Respondents with higher scores on availability, representativeness, and negative affect indicated higher proxy risk perceptions and (for representativeness only) lower unrealistic optimism, irrespective of asthma severity. Conversely, respondents who showed a stronger display of the better-than-average effect indicated lower proxy risk perceptions but did not differ in unrealistic optimism. The absent-exempt effect was unrelated to proxy risk perceptions and unrealistic optimism. CONCLUSION: Heuristic judgment processes appear to contribute to caregivers' proxy risk perceptions of their child's asthma exacerbation risk. Moreover, the display of other, possibly erroneous, judgment phenomena is associated with lower caregiver risk perceptions. Designing interventions that target these mechanisms may help caregivers work with their children to reduce exacerbation risk.

Gun attitudes on campus: United and divided by safety needs.

All people share a need for safety. Yet people's pursuit of safety can conflict when it comes to guns, with some people perceiving guns as a means to safety and others perceiving guns as a threat to safety. We examined this conflict on a U.S. college campus that prohibits guns. We distinguished between people (N = 11,390) who (1) own a gun for protection, (2) own a gun exclusively for reasons other than protection (e.g., collecting, sports), and (3) do not own a gun. Protection owners felt less safe on campus and supported allowing guns on campus. They also reported that they and others would feel safer and that gun violence would decrease if they carried a gun on campus. Non-owners and non-protection owners felt the reverse. The findings suggest that protection concerns, rather than gun-ownership per se, account for diverging perceptions and attitudes about guns and gun control.