Kaitlyn L. Gamwell

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.

Objective: Symptom burden of children with cancer appears to contribute to parent distress, but the mechanisms of this relationship are relatively unexplored. The current cross-sectional study examined rumination (i.e., repeated focus on negative events and experiences) as a mediator of the associations between parent-report of child (a) pain or (b) nausea, and parent posttraumatic stress symptoms (PTSS); parent-report of child symptoms → parent rumination → parent PTSS. Methods: Caregivers (N = 40, M _Age = 38.7 years, female = 87.5%, White = 67.5%) of children with cancer ( M _Age = 9.4 years) were recruited at a Midwest pediatric cancer center following their child’s diagnosis ( M _Months = 2.97 ± 1.98). Parents completed the PedsQL-Cancer Module, the Ruminative Response Scale, and the Impact of Events Scale—Revised. To test the hypothesized indirect effects, 2 separate regression models specifying 5,000 bias-corrected bootstrapping resamples were conducted via Hayes’ PROCESS macro. Family income served as a covariate. Results: Bootstrap regression analysis revealed that parent-report of child pain had an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .37, ß = −.24, 95% CI [−.494, −.033]. Child nausea demonstrated an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .36, ß = −.22, 95% CI [−.428, −.008]. Conclusions: Findings indicate that worse parent perception of child symptoms may lead to elevated parent distress through increased rumination. These results support the role of pediatric psychologists and the interdisciplinary team in alleviating parent distress through clinical management of both child physical symptoms and parent rumination. Implications for Impact Statement: Parents of children with cancer may feel greater psychological distress when they see their child feeling physically ill (e.g., experiencing pain, experiencing nausea). This study indicates that 1 particular parent coping strategy, rumination (i.e., intensive negative thinking about their child’s illness), may explain how parental perceptions of pain or nausea lead to greater parental distress. Addressing child symptoms as part of palliative care is essential for the well-being of the whole family, and parents may benefit from increased involvement in the clinical symptom management process and from learning adaptive strategies for coping with cancer-related distress.

Perceived illness stigma is associated with increased depressive symptoms in youth with inflammatory bowel disease (IBD), but the mechanisms by which stigma influences emotional adjustment remain unclear. It is possible that youth with IBD who are more present-focused and better able to come to terms with aspects of their disease that are less controllable (i.e. are mindful) may develop more adaptive strategies when facing illness uncertainty, resulting in more positive emotional adjustment. The present study examined the indirect association between illness stigma, illness uncertainty, depressive symptoms, and the potential moderating effect of mindfulness on this process. One hundred and seven youth (56 female, 51 male; M_age = 14.73) with IBD completed measures of illness stigma (SS-C), illness uncertainty (CUIS), depressive symptoms (CDI-2), and trait mindfulness (MAAS-A). Analyses revealed a significant SS-C → CUIS → CDI-2 indirect path (β = .686, 95% CI = .1346 to 1.489), which was moderated by MAAS-A (β = −.445, 95% CI = −.972 to −.083). Results indicate that the SS-C → CUIS → CDI-2 indirect path was significant at low, but not medium or high, levels of MAAS-A. Illness uncertainty appears to be a potential route through which stigma impacts emotional adjustment in youth with IBD, particularly for youth characterized by low mindfulness. Clinical interventions that emphasize mindfulness training along with acknowledgement/acceptance of IBD illness factors may help diminish the negative effects of stigma and illness uncertainty on adjustment in this population.

Objective: Youth with inflammatory bowel disease (IBD) often experience difficulties communicating about their disease. It is suspected that the stigmatizing nature of IBD symptoms contributes to youths’ health communication difficulties, leaving youth feeling disconnected from their social environment and potentially resulting in decreased social belongingness and poorer emotional functioning. In this study, we tested an illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms serial mediation model. It was anticipated that youth illness stigma would confer a serial indirect effect on youth depressive symptoms through the sequential effects of stigma on health communication difficulties and thwarted social belongingness.Methods: Seventy-five youth with IBD between the ages of 10 and 18 completed measures of perceived illness stigma, health communication difficulties, thwarted belongingness, and depressive symptoms.Results: Results indicated a significant illness stigma → thwarted belongingness → depressive symptoms simple mediation path. Importantly, findings also revealed a significant serial mediation path for illness stigma → health communication difficulties → thwarted belongingness → depressive symptoms.Conclusions: Youth who perceive greater IBD stigma appear to experience increased difficulty communicating about their IBD with others, which in turn is associated with feelings of thwarted social belongingness and ultimately elevated depressive symptoms. These findings suggest that difficulty communicating about IBD is one potential route by which illness stigma has a negative impact on youth adjustment outcomes. Results could also inform clinical interventions to address IBD stigma and health communication difficulties associated with the social and emotional challenges in youth with IBD.

Objective: Parents and children affected by pediatric cancer are at risk for psychological distress, including depression, anxiety, and post-traumatic stress. A link is believed to exist between parent and child distress; however, no systematic analysis of this relationship has occurred. A meta-analysis was conducted to assess the relationship between parent and child distress among families affected by pediatric cancer.Methods: A systematic review and meta-analysis was conducted using EBSCO (searching PsycINFO, MEDLINE, Academic search Premiere, and Health Source: Nursing/Academic Edition) and PubMed. The initial search yielded a total of 29,118 articles. Inclusion criteria were that studies assessed the relation between parent and child distress in the context of pediatric cancer, were written in English, and were published in peer-reviewed journals. 28 articles met inclusion criteria.Results: A statistically significant association was found between overall parent and child distress (r = .32, p < .001), such that increased parent-reported distress was associated with increased distress in their children. Significant relationships were also present among each type of parental distress (i.e., depression, anxiety, post-traumatic stress, and global distress; rs = .31–.51, ps < .001) and overall child distress. Moderation analyses via meta-regression indicated that parent proxy-report of child symptoms was associated with a stronger relationship between parent and child distress than child self-report of their own distress.Conclusions: Aligned with the social–ecological framework, familial factors appear to be highly relevant in understanding distress following pediatric cancer diagnosis. Indeed, greater parent distress was associated with greater child distress.

Adverse childhood experiences (ACEs) are known to contribute to long-term harmful effects on mental health in young adults. Research has demonstrated that having a chronic medical condition (CMC) can also be conceptualized as being a potentially traumatic experience, and that young adults with a CMC are also at risk for negative adjustment. Emotion dysregulation, or difficulty identifying and regulating one’s emotions, is common among individuals with ACEs, and is a predictor of young adult adjustment. Given the mediational link between ACEs, emotion dysregulation, and young adult adjustment, it is likely that emotion dysregulation may demonstrate a similar linkage to adjustment in individuals with a CMC. The current study compared the effects of ACEs and having a CMC on depressive and anxious symptoms, while also examining emotion dysregulation as a possible mediator for both ACEs and CMC on adjustment outcomes, specifically depressive and anxious symptoms. College students (N = 1911) completed online questionnaires that assessed history of ACEs, emotion regulation difficulties, adjustment, and chronic illness status. Path analyses demonstrated a significant correlation between ACEs and depressive and anxious symptoms, as well as having a CMC and depressive and anxious symptoms. Furthermore, emotion dysregulation demonstrated a significant mediation between ACEs and negative adjustment, as well as between having a CMC and negative adjustment. This study highlights the importance of emotion dysregulation in understanding outcomes for individuals with a CMC and/or ACEs.

Parents of children with disorders of sex development (DSD) report significant psychological distress, including posttraumatic stress symptoms (PTSS), with mothers consistently reporting higher rates of psychological distress than fathers. However, psychological factors contributing to PTSS in both parents are not well understood. The present study sought to fill this gap in knowledge by examining PTSS and illness uncertainty, a known predictor of psychological distress, in parents of children recently diagnosed with DSD. Participants were 52 mothers (M_age = 32.55 years, SD = 5.08) and 41 fathers (M_age = 35.53 years, SD = 6.78) of 53 infants (M_age = 9.09 months, SD = 6.19) with DSD and associated atypical genital development. Participants were recruited as part of a larger, multisite study assessing parents’ psychosocial response to their child’s diagnosis of DSD. Parents completed measures of illness uncertainty and PTSS. Mothers reported significantly greater levels of PTSS, but not illness uncertainty, than fathers, and were more likely than fathers to report clinical levels of PTSS (21.2% compared to 7.3%). Hierarchical regression revealed that parent sex, undiagnosed or unclassified DSD status, and illness uncertainty were each associated with PTSS. The overall model accounted for 23.5% of the variance associated with PTSS. Interventions targeting illness uncertainty may be beneficial for parents of children with newly diagnosed DSD.

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). 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. 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). 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.