Trajectories of illness uncertainty among parents of children with atypical genital appearance due to differences of sex development.

OBJECTIVE: The present study aimed to identify distinct trajectories of parental illness uncertainty among parents of children born with atypical genital appearance due to a difference of sex development over the first year following diagnosis. It was hypothesized that four trajectory classes would emerge, including "low stable," "high stable," "decreasing," and "increasing" classes, and that select demographic, familial, and medical factors would predict these classes. METHODS: Participants included 56 mothers and 43 fathers of 57 children born with moderate to severe genital atypia. Participants were recruited from eleven specialty clinics across the U.S. Growth mixture modeling (GMM) approaches, controlling for parent dyad clustering, were conducted to examine classes of parental illness uncertainty ratings over time. RESULTS: A three-class GMM was identified as the best-fitting model. The three classes were interpreted as "moderate stable" (56.8%), "low stable" (33.0%), and "declining" (10.3%). Findings suggest possible diagnostic differences across trajectories. CONCLUSIONS: Findings highlight the nature of parents' perceptions of ambiguity and uncertainty about their child's diagnosis and treatment the year following their child's birth/diagnosis. Future research is needed to better understand how these trajectories might shift over the course of the child's development. Results support the development of tailored, evidence-based interventions to address coping with uncertainty among families raising a child with chronic health needs.

Exploratory factor analysis of the Illness Intrusiveness Rating Scale for parents of children with atypical genital appearance due to differences of sex development (DSD).

OBJECTIVE: Illness intrusiveness refers to the subjective cognitive appraisal of a chronic health condition interfering in daily, valued activities and may be highly relevant for parents of children with atypical genital appearance due to differences of sex development (DSD). However, a measure of illness intrusiveness has not been validated for this population. The current study aimed to evaluate the factor structure of the Illness Intrusiveness Scale for Parents (IIS-P) and examine convergent validity. METHODS: Participants included 102 parents (Mage = 33.39 years, SD = 6.48; 58% mothers) of 65 children (<2 years old) diagnosed with DSD participating in a larger, longitudinal study. Parents completed the IIS-P as well as self-report measures of stigma, and anxious and depressive symptoms. An exploratory factor analysis (EFA) was conducted. RESULTS: EFA results supported a 1-factor intrusiveness solution (α = .93), as well as a 2-factor solution measuring intrusiveness on daily living (α = .92) and community connectedness (α = .85). The 1-factor solution and both factors of the 2-factor solution demonstrated significant convergent validity with stigma as well as anxious and depressive symptoms. CONCLUSIONS: Support emerged for both 1- and 2-factor solutions of the IIS-P in parents of children with DSD. The decision to evaluate illness intrusiveness as a total score or to examine the subscales of daily living and community connectedness should be tailored to the unique aims of researchers and clinicians. Future research should conduct a confirmatory factor analysis with both 1- and 2-factor models with larger, more diverse samples of caregivers.

Adverse Birth Experiences and Parent Adjustment Associated With Atypical Genital Appearance Due to Differences of Sex Development.

OBJECTIVE: Differences/disorders of sex development (DSDs) are rare, congenital conditions involving discordance between chromosomes, gonads, and phenotypic sex and are often diagnosed in infancy. A key subset of parents of children newly diagnosed with a DSD experience clinically elevated distress. The present study examines the relationship between perinatal factors (i.e., gestational age, delivery method) and trajectories of parental adjustment. METHODS: Parent participants (mothers = 37; fathers = 27) completed measures at baseline, 6- and 12-month follow-up. Multilevel linear regression controlled for clustering of the data at three levels (i.e., time point, parent, and family) and examined the relationship between perinatal factors and trajectories of depressive and anxious symptoms. Two-way interactions between perinatal factors and parent type were evaluated. RESULTS: Overall depressive and anxious symptoms decreased over time. There were significant interactions between gestational age and parent type for depressive and anxious symptoms, with younger gestational age having a stronger negative effect on mothers vs. fathers. There was a significant interaction between time and gestational age for depressive symptoms, with 36 weeks' gestational age demonstrating a higher overall trajectory of depressive symptoms across time compared to 38 and 40 weeks. Findings for the delivery method were not significant. CONCLUSIONS: Findings uniquely demonstrated younger gestational age was associated with increased depressive symptoms, particularly for mothers compared to fathers. Thus, a more premature birth may predispose parents of infants with DSD to distress. Psychosocial providers should contextualize early diagnosis-related discussions within stressful birth experiences when providing support.

Depressive Symptoms, Cannabis Use, and Transition Readiness among College Students with and without Chronic Medical Conditions.

Background: College students experience increased responsibility for healthcare transition. They are at increased risk for depressive symptoms and cannabis use (CU), potentially modifiable predictors of successful healthcare transition. This study investigated how depressive symptoms and CU related to transition readiness, and if CU moderated the association between depressive symptoms and transition readiness for college students. Methods: College students (N = 1,826, Mage=19.31, SD = 1.22) completed online measures of depressive symptoms, healthcare transition readiness, and past-year CU. Regression identified 1) the main effects of depressive symptoms and CU on transition readiness and 2) examined if CU moderated the relationship between depressive symptoms and transition readiness with chronic medical conditions (CMC) status as a covariate. Results: Higher depressive symptoms were correlated with past-year CU (r=.17, p<.001) and lower transition readiness (r=-0.16, p<.001). In the regression model, higher depressive symptoms were related to lower transition readiness (ß=-0.02, p<.001); CU was not related to transition readiness (ß=-0.10, p=.12). CU moderated the relationship between depressive symptoms and transition readiness (B=.01, p=.001). The negative relationship between depressive symptoms and transition readiness was stronger for those with no past-year CU (B=-0.02, p<.001) relative to those with a past-year CU (ß=-0.01, p<.001). Finally, having a CMC was related to CU and higher depressive symptoms and transition readiness. Conclusions: Findings highlighted that depressive symptoms may hinder transition readiness, supporting the need for screening and interventions among college students. The finding that the negative association between depressive symptoms and transition readiness was more pronounced among those with past-year CU was counterintuitive. Hypotheses and future directions are provided.

Childhood Adversity and Illness Appraisals as Predictors of Health Anxiety in Emerging Adults with a Chronic Illness.

Emerging adults with a chronic medical condition (CMC) are at increased risk for developing health anxiety (HA). Adverse childhood experiences (ACEs) have been linked to developing HA. CMCs and ACEs frequently co-occur among emerging adults. However, no known research has examined ACEs and HA within this critical developmental period. Further, increased negative illness appraisals (e.g., uncertainty, intrusivness) may partially explain the relation between ACEs and HA. The present study examined the following mediation model: ACEs → illness appraisals → HA. Emerging adults (N = 121) with a CMC completed self-report measures of demographics, ACEs, illness appraisals, and HA. Regression analyses were conducted to test each illness appraisal as a mediator between ACEs and HA. Results demonstrated significant indirect effects for both illness appraisals. Findings demonstrate greater ACEs may increase negative illness appraisals which heightens overall HA. Thus, these associations support trauma-informed care approaches to support emerging adults.

Sleep Patterns Related to Emotion Dysregulation Among Adolescents and Young Adults.

OBJECTIVE: Adolescents and young adults in the college setting often report poor sleep hygiene and quality. These sleep difficulties may be related to emotion dysregulation, which is highly relevant to broader adjustment. The current study aimed to empirically identify latent groups of healthy college students with distinct subjective sleep patterns and examine differences in emotion dysregulation between subgroups. METHODS: College students (N = 476; Mage=19.38) completed the Adolescent Sleep-Wake Scale-Revised, Adolescent Sleep Hygiene Scale-Revised, and Difficulties in Emotion Dysregulation Scale. Most participants were White (78%), non-Hispanic/Latinx (85%), and female (77%). Latent profile analysis identified patterns of sleep with maximum likelihood estimation. Bolck-Croon-Hagenaars procedure evaluated differences in emotion dysregulation by class. RESULTS: A three-class model had optimal fit, Bayesian information criterion = 11,577.001, Bootstrapped Parametric Likelihood Ratio Test = -5,763.042, p < .001, entropy = .815. The three profiles identified were good sleep (overall high sleep quality and hygiene; n = 219), moderate sleep (low sleep quality with mix of low and high sleep hygiene; n = 221), and poor sleep (very low sleep quality and hygiene; n = 36). Those in the good sleep group (M = 68.06, SE = 1.5) reported significantly less emotion dysregulation than the moderate sleep group (M = 92.12, SE = 1.67; X2(2) = 98.34, p = .001) and the poor sleep group (M = 99.51, SE = 4.10; p < .001). The moderate and poor sleep groups did not significantly differ, X2(2) = 2.60, p = .11. CONCLUSIONS: Emotion dysregulation differed across three sleep profiles, with participants classified in the good sleep group reporting, on average, the lowest emotion dysregulation, compared to the moderate and poor sleep groups. These findings highlight contextual factors of sleep that may be clinically targeted to promote emotion regulation.

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.

Health Care Utilization, Transition Readiness, and Quality of Life: A Latent Class Analysis.

OBJECTIVE: To identify possible subgroups of health care utilization (HCU) patterns among adolescents and young adults (AYAs) with a chronic medical condition (CMC), and examine how these patterns relate to transition readiness and health-related quality of life (HRQoL). METHODS: Undergraduates (N = 359; Mage=19.51 years, SD = 1.31) with a self-reported CMC (e.g., asthma, allergies, irritable bowel syndrome) completed measures of demographics, HCU (e.g., presence of specialty or adult providers, recent medical visits), transition readiness, and mental HRQoL (MHC) and physical HRQoL (PHC). Latent class analysis identified four distinct patterns of HCU. The BCH procedure evaluated how these patterns related to transition readiness and HRQoL outcomes. RESULTS: Based on seven indicators of HCU, a four-class model was found to have optimal fit. Classes were termed High Utilization (n = 95), Adult Primary Care Physician (PCP)-Moderate Utilization (n = 107), Family PCP-Moderate Utilization (n = 81), and Low Utilization (n = 76). Age, family income, and illness controllability predicted class membership. Class membership predicted transition readiness and PHC, but not MHC. The High Utilization group reported the highest transition readiness and the lowest HRQoL, while the Low Utilization group reported the lowest transition readiness and highest HRQoL. CONCLUSIONS: The present study characterizes the varying degrees to which AYAs with CMCs utilize health care. Our findings suggest poorer PHC may result in higher HCU, and that greater skills and health care engagement may not be sufficient for optimizing HRQoL. Future research should examine the High Utilization subgroup and their risk for poorer HRQoL.

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.

Barriers to care in pediatric cancer: The role of illness uncertainty in relation to parent psychological distress.

OBJECTIVE: The current study evaluated perceived barriers to care for parents of children with cancer and the mediating effect of illness uncertainty (IU; uncertainty from the ambiguity or unpredictability of the illness) on the relationship between barriers and parental psychological distress. We hypothesized that greater barriers to care would be related to higher levels of IU and, in turn, higher anxiety, depression, and posttraumatic stress symptom (PTSS) ratings. METHODS: As part of an ongoing study of family adjustment to pediatric cancer, 145 caregivers of children diagnosed with cancer completed questionnaires assessing barriers to care, parent IU, and anxious symptoms, depressive symptoms, and PTSS. Time since cancer diagnosis ranged from 1 to 12 months. RESULTS: Three mediation models assessed IU as a mediator between barriers to care and anxious symptoms, depressive symptoms, and PTSS, controlling for annual income. IU significantly mediated the relationship between barriers to care and depressive symptoms (B = -.03, SE = .02; 95% CI [-.08, -.01]) and to PTSS (B = -.15, SE = .10; 95% CI [-.38, -.03]). The mediation model was not significant for anxious symptoms. CONCLUSION: Experiencing barriers to obtaining treatment for their child with cancer is a significant risk factor for symptoms of depression and PTSS among parents. Specifically, greater barriers to care is significantly associated with IU, a well-established precursor to distress in this population. Interventions targeting IU may help ameliorate distress within the context of unmodifiable barriers to care.

Psychological adjustment outcomes among pediatric brain tumor survivors: A meta-analysis.

BACKGROUND: Pediatric brain tumor survivors (PBTS) are at significant risk for psychological adjustment difficulties, including greater depressive and anxious symptomology. Systematic reviews have identified this heightened risk among youth with medical conditions, but these reviews have not been specific to PBTS. Therefore, the current study aimed to directly examine the psychological adjustment of PBTS as compared to healthy peers. PROCEDURE: A systematic review and meta-analysis was conducted using PubMed, PsychInfo, and Academic Search Premier databases. The search yielded 2833 articles, with 22 articles meeting inclusion criteria. RESULTS: A statistically significant overall medium effect size (Hedge's g = 0.32) indicated that PBTS exhibited poorer overall psychological adjustment relative to healthy comparison groups. Studies that included younger children were associated with larger between-group differences. When evaluating specific outcomes, PBTS had relatively higher levels of depressive symptoms (Hedge's g = 0.36), anxious symptoms (Hedge's g = 0.11), and general distress (Hedge's g = 0.22), but not more externalizing problems. CONCLUSIONS: The present study confirmed that PBTS are indeed at greater risk for psychological adjustment difficulties relative to healthy comparison groups. These findings highlight the importance of psychosocial screening among this population. Given that depressive symptoms were the most elevated relative to healthy peers, investigation of such symptomatology among PBTS is particularly important.

The Role of Grit in Health Care Management Skills and Health-related Quality of Life in College Students with Chronic Medical Conditions.

PURPOSE: Adolescents and young adults (AYAs) with chronic medical conditions are at risk for reduced health-related quality of life (HRQoL). Recent research on AYAs without chronic medical conditions found that greater health care management skills were related to higher HRQoL. In addition, grit, an intrapersonal strength, has been linked to greater health care management skills and HRQoL. The current study extended these findings to AYAs with a chronic medical condition. DESIGN AND METHODS: Three hundred and seventy-five undergraduates with a chronic medical condition completed questionnaires, including the short Grit Scale, Transition Readiness Assessment Questionnaire, and RAND 36-Item Short Form Survey. RESULTS: Path analysis revealed a significant direct effect of grit on health care management skills and on both mental and physical HRQoL. Further, health care management skills had a significant indirect effect on the grit → mental HRQoL association, but not on the grit → physical HRQoL association. CONCLUSIONS: Higher levels of grit were linked to better health care management skills and better mental and physical HRQoL. Further, grit and mental HRQoL were indirectly linked through health care management skills, suggesting the utility of these skills in improving mental HRQoL. PRACTICE IMPLICATIONS: Given the observed benefits of higher grit and health care management skills on emotional HRQoL, and the potential impact of health care management skills on future physical HRQoL, interventions targeting the enhancement of grit and health care management skills may be beneficial in improving the efficacy of transition readiness interventions.

Cross-Cultural Disparities in Psychosocial Research with Individuals with Classical Congenital Adrenal Hyperplasia: A Scoping Review.

INTRODUCTION: There are increased calls to address psychosocial needs among individuals with classical congenital adrenal hyperplasia (CAH). However, cross-cultural disparities exist in treatment practices and psychosocial outcomes that impact the generalizability of evidence-based recommendations. To date, this disparity has not been quantified. The present scoping review uses a dual approach to contrast rates of CAH diagnosis with CAH psychosocial research rates across countries. METHODS: Six electronic database searches were conducted for: (1) CAH incidence/birth/prevalence rates; and (2) psychosocial research with affected individuals and their families. Two authors reviewed each abstract for inclusion criteria. RESULTS: Sixty-eight and 93 full-text articles, respectively, were evaluated for incidence and country. The countries/regions with the highest reported CAH rates are Thailand, Ghana, and India. Those with the greatest portion of psychosocial publications are the USA, Germany, and the UK. CONCLUSION: A discrepancy exists between those countries with the highest CAH rates and those publishing psychosocial research. Specifically, increased rates of CAH are seen in non-Western countries/regions, whereas most psychosocial research arises out of Western Europe and the USA. Due to cultural differences between these regions, increased global collaboration is needed to both inform psychosocial research and translate findings in ways that are representative worldwide.

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 uncertainty, cognitive-emotional arousal, and sleep outcomes among emerging adults with a chronic medical condition.

Objective: Investigate the sleep hygiene and quality of emerging adults with a CMC compared to healthy peers as well as potential predictors of sleep quality. Participants: College students with and without a CMC (n = 137 per group; aged 18-23 years) at a Midwestern university. Methods: Participants reported on anxious and depressive symptoms, sleep quality, sleep hygiene, and illness uncertainty. Results: College students with a CMC reported poorer sleep quality (Adolescent Sleep Quality Scale-Revised) and hygiene (Adolescent Sleep Hygiene Scale-Revised) than the non-CMC group. The indirect effect of internalizing symptoms on sleep quality via cognitive-emotional arousal was only significant in the CMC. Illness uncertainty demonstrated a significant indirect effect on sleep quality though the consecutive influence of internalizing symptoms and cognitive-emotional arousal. Conclusions: Emerging adults with CMCs may experience poorer sleep outcomes than peers. Illness uncertainty, internalizing symptoms, and cognitive-emotional arousal appear relevant to sleep outcomes, suggesting clinical implications for these constructs.

Parent psychosocial adjustment to inpatient pediatric rehabilitation, and the role of uncertainty and self-care.

PURPOSE/OBJECTIVE: The stressors experienced by parents of children admitted for inpatient rehabilitation likely place parents at high risk for poor psychosocial adjustment; however, no research to date has described parent adjustment during the acute phase of a child's inpatient rehabilitation hospitalization. The present study evaluates parent adjustment processes through the lens of the transactional stress and coping model by assessing a specific cognitive process (i.e., illness uncertainty) and coping methods (i.e., self-care), which may influence parent adjustment during the inpatient rehabilitation. RESEARCH METHOD/DESIGN: Forty-two parents (47.6% White, 86% female) of children newly admitted to a pediatric inpatient rehabilitation hospital were recruited. Parents completed self-report measures of demographics, illness uncertainty, self-care, and depressive, anxious, and posttraumatic stress symptoms. RESULTS: Sixty-six percent of parents reported clinically significant symptoms in at least one domain of distress. Illness uncertainty accounted for 22.2%-42.4% of the variance in parent distress symptoms, after controlling for parent and child age, parent trauma history, and income. Self-care accounted for 35.1%-51.9% of the variance in parent distress symptoms, when accounting for parent and child age, parent trauma history, and income. CONCLUSIONS/IMPLICATIONS: More than half of parents endorsed clinical elevations in anxiety, depression, and/or posttraumatic stress. Illness uncertainty and self-care are likely very important clinical topics to discuss with parents. Future research should seek to not only assess how parent distress changes across time, but also how other cognitive processes, as well as environmental and family factors influence the parent adjustment process. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Medical Symptom Validity Test (MSVT) profiles in individuals being evaluated for Alzheimer's disease.

Objective:Our purpose was to determine whether Medical Symptom Validity Test (MSVT) profiles could differentiate performance invalidity from true impairment in patients with varying levels of memory impairment and functional ability being evaluated for Alzheimer's disease (AD). Method: Seventy-three older adults (13 healthy controls, 25 mild cognitive impairment [MCI], 16 mild AD, 19 moderate AD) were evaluated with a neuropsychological battery including the MSVT and activities of daily living (ADL) measures. Using MSVT classification guidelines, examinees' MSVT profiles were categorized as: 1) valid, 2) invalid, 3) weak memory, or 4) genuine memory impairment (GMIP). Results: Eighty-four percent of moderate AD examinees produced a GMIP. Among MCI and mild AD examinees, who had only modestly affected ADLs, a substantial proportion manifested a GMIP (40% and 62.5%, respectively). An invalid profile was uncommon across patient groups (12.5% in mild AD, 5.3% in moderate AD, and 0% in MCI). Conclusions: The MSVT functions reasonably well in a dementia sample to determine if an examinee has an invalid profile, although for mild AD examinees, the false positive rate is slightly above the recommended 10% cut-off. However, even individuals with MCI, mild AD and relative preservation of ADLs may manifest a GMIP, demonstrating that such profile is found across patients with lower and higher degrees of functional impairment. Given this finding, the usefulness of the GMIP in differentiating performance invalidity from true impairment in patients being evaluated for AD appears limited.

Stigma, Intrusiveness, and Distress in Parents of Children with a Disorder/Difference of Sex Development.

OBJECTIVE: The impact of parent-reported stigma due to their child's disorder/difference of sex development (DSD) on parent psychosocial adjustment is poorly understood. In other pediatric populations, perceived interference of medical conditions into daily activities (i.e., illness intrusiveness ) mediates the relationship of stigma to adjustment. This study assessed relationships between parent-focused and child-focused stigma → illness intrusiveness → depressive and anxious symptoms . Exploratory analyses sought to identify patient characteristics associated with stigma. METHOD: Caregivers (59 women and 43 men) of 63 children diagnosed with a DSD up to age 4 years completed measures of demographics, parent-focused and child-focused stigma, illness intrusiveness, and depressive and anxious symptoms. RESULTS: Increased parent-focused and child-focused stigma were associated with increased illness intrusiveness, which, in turn, was associated with increased depressive and anxious symptoms for parents nested within dyads. Among children with DSD family histories, parents reported greater child-focused stigma. CONCLUSION: Parents who experience DSD-related stigma report greater interference of their child's DSD into their daily activities, which is associated with poorer psychosocial adjustment. Findings support developing clinical interventions related to parents' perceptions of stigma and illness intrusiveness to improve parent adjustment.

Factor Analysis of the Stigma Scale-Parent Version in Pediatric Disorders/Differences of Sex Development.

Stigma is a salient experience for both caregivers/parents and individuals with Disorders/Differences of Sex Development (DSD) as evidenced through qualitative and preliminary quantitative reports. However, few validated measures of associative stigma (i.e., vicarious stigma experienced through close association with someone who is socially stigmatized) for parents of children with DSD exist. The present study aims to (1) determine the factor structure of the adapted Stigma Scale - Parent, and (2) examine convergent validity of the factor structure with measures of parent psychosocial adjustment. Confirmatory factor analytic results revealed two factors: a parent-focused factor and a child-focused factor. The parent-focused factor demonstrated convergent validity with parent adjustment measures, but the child-focused factor did not. Together, these results indicate that parent-focused and child-focused stigma are distinct factors, with parent-focused associative stigma being related to parent adjustment following DSD diagnosis. Future research should further refine this measure to determine predictive validity and clinical value.