The contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in pediatric inflammatory bowel disease.

BACKGROUND: Clinical disease activity associated with inflammatory bowel disease (IBD) can place physical limitations on youths' activities of daily living. In turn, functional limitations potentially contribute to youths' heightened experience of IBD-induced intrusions on a wide range of routine and valued activities (i.e., illness intrusiveness), which can increase their risk for depressive symptoms. The present study examined the contributions of clinical disease activity, functional disability, and illness intrusiveness to depressive symptoms in youth with IBD. METHODS: Youth (N = 180) completed the Functional Disability Inventory (FDI), Illness Intrusiveness Scale-Child (IIS-C), and Children's Depression Inventory-2 (CDI-2). Physicians completed the Physicians Global Assessment of disease activity (PGA). RESULTS: Results revealed a mediating effect for functional disability in the association between disease activity and depressive symptoms (PGA → FDI → CDI-2); illness intrusiveness mediated the association between functional disability and depressive symptoms (i.e., FDI → IIS-C → CDI-2). Serial mediation revealed that clinical disease activity conferred an indirect effect on youth depressive symptoms through the sequential effects of functional disability and illness intrusiveness (i.e., PGA → FDI → IIS-C → CDI-2). CONCLUSIONS: Taken together, these findings indicate that youth who encounter more physical limitations as a function of clinical disease activity are more likely to experience an amplified sense of IBD-related intrusions on their ability to participate in meaningful activities. In turn, heightened illness intrusiveness increases the likelihood of depressive symptoms. Clinical interventions that help youth maintain adequate functional ability in the face of IBD disease activity and encourage involvement in positively valued activities could decrease the negative impact of IBD on youths' emotional adjustment.

Parental Uncertainty Scale Factor Structure in Pediatric DSD With Ambiguous Genitalia.

OBJECTIVE: Illness uncertainty is a salient experience for caregivers of children with disorders/differences of sex development (DSD) presenting with ambiguous genitalia; however, no validated measure of illness uncertainty exists for this unique population. Thus, the current study aimed to preliminarily identify the factor structure of the Parental Perception of Uncertainty Scale (PPUS) in caregivers of children with DSD presenting with ambiguous genitalia and examine the convergent validity of the PPUS. METHODS: Participants included 115 caregivers (Mage = 32.12 years, SD = 6.54; 57% mothers) of children (<2-year-olds) diagnosed with DSD participating in a larger, longitudinal study. Caregivers completed the PPUS as well as self-report measures of anxious, depressive, and posttraumatic stress symptoms. An exploratory factor analysis was conducted. RESULTS: Exploratory factor analysis results indicated that a 23-item 1-factor solution was the most parsimonious and theoretically sound factor structure (α = 0.92). Convergent validity analyses demonstrated further support for the use of the 23-item 1-factor solution over the original PPUS factor structure. CONCLUSION: These results demonstrate the preliminary clinical and research utility of the PPUS with caregivers of children with DSD presenting with ambiguous genitalia. The PPUS may benefit from further refinement through qualitative research and item adaptation to capture uncertainties unique to DSD presenting with ambiguous genitalia. In addition, future research should replicate the proposed factor structure using confirmatory factor analysis with a separate, larger sample of caregivers of children with DSD to confirm the factor structure.

Factor analysis of the stigma scale-child in pediatric inflammatory bowel disease.

OBJECTIVE: Illness stigma, or perceived stigma related to a chronic health condition, is pervasive among youth with inflammatory bowel disease (IBD). However, no studies exist examining the psychometric properties of illness stigma measures in this population. Using a modified version of the Child Stigma Scale originally developed for youth with epilepsy, the current study investigated the factor structure and validity of this adapted measure (i.e., Stigma Scale - Child; SS-C) in youth with IBD. METHODS: Factor analyses were conducted to determine the most parsimonious factor structure for the adapted 8-item Stigma Scale - Child in a sample of 180 youth with IBD. Correlations were conducted to assess convergent validity, and a multiple regression was conducted to further evaluate the measure's predictive validity of child depressive symptoms. RESULTS: The most parsimonious model for the SS-C is a one-factor solution with an error covariance between the two items assessing concealment/disclosure of IBD diagnosis. CONCLUSIONS: The SS-C is a psychometrically sound illness stigma measure in pediatric IBD that demonstrates strong convergent validity with psychosocial adjustment factors such as thwarted belongingness, illness uncertainty, and illness intrusiveness, as well as strong predictive validity with youth depressive symptoms. The SS-C is a viable option for use as a brief screener in youth with IBD across clinical and research settings.

The Combined Effects of Youth and Parent Illness Intrusiveness on Depressive Symptoms in Adolescents with Inflammatory Bowel Disease.

Inflammatory bowel disease (IBD) presents physical and emotional challenges for families and imposes significant lifestyle intrusions on both youth and parents. The present study examined the effects of IBD disease activity and youth illness intrusiveness on depressive symptoms in adolescents, and the moderating influence of parent illness intrusiveness on these associations. Adolescents and parents completed measures of illness intrusiveness; youth completed a measure of depressive symptoms. Physicians provided estimates of IBD disease activity. Mediation analysis revealed an IBD disease activity → youth intrusiveness → youth depressive symptoms indirect effect. Moderated mediation analyses revealed this indirect effect to be greater among youth whose parents endorsed more IBD-related intrusions. Youth encountering greater activity disruptions related to IBD are vulnerable to depressive symptoms. When parents also experience IBD-induced intrusions, youth are at even greater risk for depressive symptoms. Clinical implications are discussed within the context of youths' and parents' experiences of IBD.

Transition readiness and quality of life in emerging adult college students.

OBJECTIVE: To examine the relative contribution of transition readiness (i.e., healthcare self-management) to health-related quality of life (HRQoL) among emerging adult (EA) college students without a chronic medical condition (CMC).Participants: College students (n = 2372; Mage = 19.32, SD = 1.26) from a Midwestern university.Methods: Participants completed online measures of demographics, HRQoL, and transition readiness.Results: Hierarchical regression analyses found transition readiness accounted an additional 3-4% of the variability in mental and physical HRQoL (p < .001), beyond demographic factors. 11.3% of EAs reported overall mastery of transition readiness, with navigating health insurance being the weakest area.Conclusions: Findings support the consensus that transition readiness is relevant to HRQoL for all EAs, including those without a CMC. EAs without a CMC demonstrate relatively weak transition readiness skills. Primary and university-based healthcare might consider programs supporting transition readiness and HRQoL among underresourced EAs.

Illness stigma, body image dissatisfaction, thwarted belongingness and depressive symptoms in youth with inflammatory bowel disease.

BACKGROUND: Elevated depressive symptoms are observed in a significant number of youth with inflammatory bowel disease (IBD) and have been linked to illness stigma and social isolation. Body image dissatisfaction is an understudied variable in the pediatric IBD literature that may be related to both stigma and social difficulties. It is suspected that, due to the stigmatizing nature of IBD, some youth may feel self-conscious about their body image, which contributes to decreased feelings of social belongingness and ultimately depressive symptoms. The current study tested an illness stigma→ body image dissatisfaction→ thwarted belongingness→ depressive symptoms serial mediation model, in which IBD stigma was hypothesized to indirectly influence youth depressive symptoms through the sequential effects of stigma on body image dissatisfaction and thwarted social belongingness. METHODS: Youth with IBD (N = 75) between 10 and 18 years old were recruited from a pediatric gastroenterology clinic and completed psychosocial measures. Disease severity was assessed by a physician global assessment. Current medications and BMI data were collected. RESULTS: Analyses revealed significant direct effects among the modeled variables and a significant serial indirect path for illness stigma→ body image dissatisfaction→ thwarted belongingness→ depressive symptoms, controlling for sex, BMI and prednisone medication. CONCLUSIONS: Youth who perceive greater IBD stigma are more likely to experience increased body image dissatisfaction due to their IBD, which may engender feelings of social estrangement and ultimately elevated depressive symptoms. Depressive symptoms and the psychosocial challenges faced by youth should be routinely monitored as part of comprehensive IBD management.

The impact of illness intrusiveness and overparenting on depressive symptoms in parents of youth with inflammatory bowel disease.

PURPOSE: Inflammatory bowel disease (IBD) management creates significant caregiver demands that can interfere with parents' ability to engage in a number of role functions (i.e., illness intrusiveness) well into their child's adolescence, potentially resulting in excessive or misdirected parenting (i.e., overparenting). Disruptions and limited access to routine and valued activities (e.g., family, work, and leisure) due to IBD and excessive parenting may result in parents neglecting their own personal and emotional self-care needs, increasing their risk for depressive symptoms. To explore these associations, the present study examined parents' experience of illness intrusiveness and subsequent overparenting as serial mediators in the association between disease severity and parent depressive symptoms. DESIGN AND METHODS: Participants were 146 caregivers of adolescents with IBD from an outpatient pediatric gastroenterology clinic. During a scheduled outpatient visit, parents completed measures of illness intrusiveness, overparenting, and depressive symptoms. Pediatric gastroenterologists provided ratings of disease severity. RESULTS: Several direct and indirect associations were observed among the modeled variables. Notably, mediation analysis revealed a significant disease severity → illness intrusiveness → overparenting → depressive symptoms serial indirect effect. CONCLUSIONS: Parents' experience of greater IBD-induced lifestyle disruptions is associated with increased overparenting and a heightened risk for depressive symptoms. PRACTICE IMPLICATIONS: Parents should be encouraged to establish and maintain a healthy balance between parenting and self-care/role function activities, especially during adolescence when greater youth autonomy and independence are crucial. These types of clinical efforts may reduce the likelihood of parents experiencing depressive symptoms, and have the added benefit of improving adolescent IBD self-management.

Relationship Between Caregiver Uncertainty, Problem-Solving, and Psychological Adjustment in Pediatric Cancer.

OBJECTIVE: The current study examined the roles of constructive and dysfunctional problem-solving strategies in the relationships between illness uncertainty and adjustment outcomes (i.e., anxious, depressive, and posttraumatic stress symptoms) in caregivers of children newly diagnosed with cancer. METHODS: Two hundred thirty-eight caregivers of children (0-19 years of age) newly diagnosed with cancer (2-14 weeks since diagnosis) completed measures of illness uncertainty, problem-solving strategies, and symptoms of anxiety, depression, and posttraumatic stress. RESULTS: A mediation model path analysis assessed constructive and dysfunctional problem-solving strategies as mediators between illness uncertainty and caregiver anxious, depressive, and posttraumatic stress symptoms. Dysfunctional problem-solving scores partially mediated the relationships between illness uncertainty and anxious, depressive, and posttraumatic stress symptoms. Constructive problem-solving scores did not mediate these relationships. CONCLUSIONS: The current findings suggest that illness uncertainty and dysfunctional problem-solving strategies, but not constructive problem-solving strategies, may play a key role in the adjustment of caregivers of children newly diagnosed with cancer. Interventions aimed at managing illness uncertainty and mitigating the impact of dysfunctional problem-solving strategies may promote psychological adjustment.

The Role of Avoidance Coping and Illness Uncertainty in the Relationship Between Transition Readiness and Health Anxiety.

PURPOSE: The transition to college is associated with numerous stressors, including environmental changes, increased academic expectations, and changes in social support, all of which may be exacerbated by the added responsibility of managing a chronic medical condition. Huang (2019) proposed a model examining the relationships between coping styles, transition readiness, and health anxiety, and suggested that greater transition readiness is associated with adaptive coping strategies and less health anxiety. However, there are limited findings as to how poor transition readiness relates to health anxiety. Therefore, the current study tested a serial mediation model (i.e., poor transition readiness → avoidance coping → illness uncertainty → health anxiety). DESIGN AND METHODS: College students (N = 194) with a chronic medical condition completed self-report questionnaires. RESULTS: Results indicated several direct effects among the modeled variables and a significant poor transition readiness → avoidance coping → illness uncertainty → health anxiety serial mediation (path a1d21b2 = 0.438, 95% CI = 0.153 to 0.913). CONCLUSIONS: Worse transition readiness was associated with increased avoidance as a coping mechanism, which in turn is associated with increased illness uncertainty, and ultimately health anxiety. The current findings identified possible drivers of health anxiety in college students with a chronic medical condition. PRACTICE IMPLICATIONS: These findings highlight that good transition readiness skills may buffer against maladaptive avoidance, illness uncertainty, and health anxiety. Modules aimed at improving healthcare management, avoidance, and illness uncertainty may be beneficial additions to interventions to reduce health anxiety.

Stigma Moderates the Relation Between Peer Victimization, Thwarted Belongingness, and Depressive Symptoms in Youth with Inflammatory Bowel Disease.

PURPOSE: The stigmatizing nature of IBD symptoms may place youth at risk for being targets of peer victimization, potentially resulting in a decreased sense of social belongingness and poorer emotional adjustment. The present study tested a series of mediation and moderated mediation models examining the associations among peer victimization, thwarted social belongingness, and depressive symptoms, as well as the moderating role of IBD stigma in these associations. We hypothesized peer victimization would have an indirect effect on youth depressive symptoms through thwarted belongingness, and this effect would be amplified for youth endorsing greater IBD stigma. DESIGN AND METHODS: Seventy-five youth (10-18 yrs.) diagnosed with IBD were recruited from a pediatric gastroenterology clinic. Participants completed self-report measures of IBD stigma, peer victimization, thwarted belongingness, and depressive symptoms. RESULTS: As anticipated, mediation analyses revealed a significant peer victimization → thwarted belongingness → depressive symptoms indirect path. Moderated mediation analyses indicated that this indirect effect was moderated by IBD stigma and was significantly greater among youth reporting higher IBD stigma. CONCLUSIONS: Youth who experience higher levels of IBD-related stigma are at increased risk for depressive symptoms as a function of the socially isolating effects of peer victimization. PRACTICE IMPLICATIONS: Our findings highlight the need for routine screening and identification of the socioemotional challenges faced by youth with IBD. Clinical interventions that incorporate coping strategies aimed at minimizing youths' stigmatizing self-perceptions and improving overall social skills and social engagement may lessen the negative impact of peer victimization on youths' social and emotional adjustment.

Illness Stigma, Worry, Intrusiveness, and Depressive Symptoms in Youth With Inflammatory Bowel Disease.

BACKGROUND: Youth who experience IBD-associated stigma may manifest increased worry about aversive symptoms that can intrude on their participation in routine activities (eg, school, social events), potentially resulting in limited opportunities for reinforcement and increased depressive symptoms. The present study examined an IBD stigma → IBD worry → illness intrusiveness → depressive symptoms serial mediation model, in which stigma was hypothesized to confer an indirect effect on youth depressive symptoms through the serial effects of stigma on IBD worry and illness intrusiveness. METHODS: Youth with IBD (N = 90) between the ages of 10 and 18 years were recruited from a pediatric gastroenterology clinic and completed measures of IBD stigma, IBD worry, illness intrusiveness, and depressive symptoms. RESULTS: In addition to several independent direct effects among the modeled variables, results revealed a significant IBD stigma → IBD worry → illness intrusiveness → depressive symptoms serial mediation path (effect = 0.63, 95% CI = 0.22 to 1.20), controlling for youth sex and IBD severity. CONCLUSIONS: The experience of IBD-related stigma may prompt increased worry about IBD symptoms, independent of the influence of disease activity. Further, heightened worry appears to amplify youths' experience of IBD-imposed limitations on routine and rewarding activities, increasing their risk for experiencing depressive symptoms. Our findings highlight the importance of regular screening for depressive symptoms, as well as the identification of potential risk factors associated with emotional adjustment difficulties. Stigma-specific treatment modules could be integrated within existing cognitive-behavioral approaches for reducing worry and depressive symptoms in youth with IBD.

Stigma by Association: Parent Stigma and Youth Adjustment in Inflammatory Bowel Disease.

OBJECTIVE: Examine the indirect association between parents' experience of stigma (i.e., associative stigma) and youth depressive symptoms through the serial effects of associative stigma on parent and youth illness intrusiveness in pediatric inflammatory bowel disease (IBD). METHODS: During routine clinic visits, 150 youth with well-controlled IBD (ages 10-18 years) completed measures of perceived illness intrusiveness and depressive symptoms. Parents completed measures of associative stigma and illness intrusiveness. Pediatric gastroenterologists provided ratings of IBD disease severity. RESULTS: Structural equation modeling revealed significant direct associations for associative stigma → parent illness intrusiveness, parent illness intrusiveness → youth illness intrusiveness, and youth illness intrusiveness → youth depressive symptoms. Results also revealed a significant associative stigma → parent illness intrusiveness → youth illness intrusiveness→ youth depressive symptoms serial mediation path, indicating that parents' experience of associative stigma indirectly influenced youth depressive symptoms through its sequential effects on parent and youth perceived illness intrusiveness. CONCLUSIONS: Parents who face stigma related to their child's IBD (i.e., associative stigma) are more likely to experience IBD-induced lifestyle intrusions (i.e., illness intrusiveness), which in turn is associated with youths' illness intrusiveness and ultimately youth depressive symptoms. These findings provide further evidence for the important role of illness-related stigma in pediatric IBD, particularly the transactional relation between parents' associative stigma and youths' illness appraisals and emotional functioning. The clinical implications of our results for addressing adjustment difficulties in youth with IBD are also discussed.

Disease Severity and Depressive Symptoms in Adolescents With Inflammatory Bowel Disease: The Mediating Role of Parent and Youth Illness Uncertainty.

OBJECTIVE: The objective of this study is to examine parent and youth appraisals of illness uncertainty as potential serial mediators in the relation between disease severity and youth depressive symptoms in adolescents with inflammatory bowel disease (IBD). METHODS: Participants were 85 adolescents 13-18 years of age (Mage = 15.75, SD =1.51) with a confirmed diagnosis of IBD (Crohn's disease, 59%; ulcerative colitis, 41%) and a primary caregiver. At a scheduled outpatient visit, caregivers completed a measure of illness uncertainty, while adolescents completed measures of illness uncertainty and depressive symptoms. Pediatric gastroenterologists provided global estimates of disease severity. RESULTS: Path analysis revealed several significant direct and indirect associations among the modeled variables. Importantly, results provided support for the hypothesized disease severity→parent illness uncertainty→youth illness uncertainty→youth depressive symptoms serial mediation path (95% confidence interval = 0.04 to 1.10). CONCLUSIONS: Results indicate that increased disease activity may serve to magnify the unpredictable nature of IBD for parents, reflected in heightened perceptions of illness uncertainty. Our findings also suggest that increased parent illness uncertainty has a significant influence on youth illness uncertainty appraisals, which in turn translates into elevated depressive symptoms in adolescents with IBD. The clinical implications of our findings and suggestions for future studies are discussed.