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.

The Moderating Role of Health Status on the Association Between Depressive Symptoms and Cannabis Vaping.

Objective: Cannabis vaping is increasing among college students. There is little information on risk factors for vaping cannabis. Consistent with the self-medication hypothesis, experiencing depressive symptoms and having a chronic medical condition (CMC) are associated with cannabis use among young adults. Individuals who experience both risk factors may be at higher risk for cannabis vaping. This study examined cross-sectional associations between depressive symptoms, CMC status, and cannabis vaping, and identified the moderating role of CMC status on depressive symptoms and cannabis vaping. Method: College students (N = 3,742) self-reported on depressive symptoms, CMC status, and lifetime and current cannabis vaping (i.e., cannabis vaporizers; electronic nicotine devices to use cannabis). Data were collected Fall 2017 until Spring 2021. The sample was predominantly female (70.9%) and White (75.4%). Regression analyses were used. Results: Greater depressive symptoms were related to increased likelihood of cannabis vaping across outcomes. Having a CMC was related to lifetime history of cannabis vaporizing. CMC status moderated the associations between depressive symptoms and lifetime cannabis vaporizing. Depressive symptoms were only a risk factor for cannabis vaporizing among college students without a CMC, not those with a CMC. Conclusions: Interventions that teach adaptive ways of coping with depressive symptoms and the potential demands of managing a CMC in college are needed. Comprehensive programs for college students, with and without CMCs, are needed to support those with comorbid depression and cannabis vaping use.

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.

The study of psychosocial outcomes of parents bereaved by pediatric illness: a scoping review of methodology and sample composition.

OBJECTIVE: Parents of children who died of a medical condition experience a range of psychosocial outcomes. The current scoping review aims to summarize the outcomes assessed, methodology, and sample characteristics of recent psychosocial research conducted with this population. METHODS: Included studies were limited to peer-reviewed, psychosocial outcomes research published between August 2011 and August 2022, written in English, and including caregiver study participants of children who died of a medical condition. Data sources were scholarly journal articles from 9 electronic databases, including Scopus, Web of Science, Academic Search Primer, ProQuest Research Library, PubMed, Embase, PsycINFO, Psychology & Behavioral Sciences Collection, and Health Source: Nursing/Academic Edition. The Mixed Methods Appraisal Tool-2018 evaluated methodological quality. RESULTS: The study sample included 106 studies, most of which were either qualitative (60%) or quantitative (29%). Mixed-methods studies (8%) and randomized clinical trials (2%) were also identified. Study quality was variable, but most studies met all quality criteria (73%). Studies primarily represented cancer populations (58%), White participants (71%), and mothers (66%). Risk-based psychosocial outcomes (e.g., grief) were more commonly assessed than resilience-based outcomes. CONCLUSIONS: The current scoping review revealed that recent research assessing the psychosocial outcomes of bereaved parents is limited in the representation of diverse populations, primarily qualitative, of broadly strong methodological quality, and oriented to psychosocial risk. To enhance the state of the science and inform evidence-based psychosocial services, future research should consider varied methodologies to comprehensively assess processes of risk and resilience with demographically and medically diverse populations.

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.

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.

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.

Depressive Symptom Trajectories Across Adolescence and Adulthood Among Individuals With Asthma.

OBJECTIVE: Individuals with asthma experience increased depressive symptoms, which is associated with deleterious health outcomes. No studies have examined depressive symptom trajectories among individuals with asthma despite increased risk. This study expanded prior literature by identifying the following: (1) depressive symptoms trajectories for individuals with and without asthma and (2) predictors of baseline levels and changes in symptoms across time for individuals with asthma. METHODS: Adolescents with (N = 965) and without (N = 7,392) asthma self-reported on depressive symptoms (CESD-9) across development. Covariates included: demographics and persistence of asthma. Latent growth curve modeling (LGCM) was used to identify depressive symptom trajectories and their predictors. RESULTS: A multigroup LCGM identified no significant differences between depressive symptom trajectories of individuals with and without asthma. Depressive symptoms followed a quadratic shape across time for individuals with asthma (Mintercept = 5.73, p < .00; Mlinear = -0.38,p < .001; Mquad = 0.03, p < .001), with a linear deceleration in depressive symptoms during adolescence and an acceleration of symptoms into adulthood. Next predictors of depressive trajectories among individuals with asthma were examined. Female sex (B = 0.58, p < .001), lower parent education (B = -0.57, p < .001), older age (B = 0.19, p < .001), and identifying as Black (B = 0.31, p = .04) were associated with greater baseline depressive symptoms. Older individuals exhibited faster linear symptom decelerations (B = -0.56, p < .001) and faster symptom accelerations (B = 0.73, p < .001). American Indian (AIAN) individuals exhibited faster linear symptom decelerations (B = -1.98, p = .005) and faster quadratic accelerations (B = 3.33, p = .007). DISCUSSION: Our results suggest that the depressive symptom trajectories of individuals with asthma are curvilinear and similar to individuals without asthma. When examining predictors of depressive symptom trajectories for those with asthma, socioeconomic disadvantage and racial marginalization were associated with greater baseline depressive symptoms. Although AIAN youth demonstrated more favorable trajectories in adolescence, they also exhibited worse trajectories across young adulthood and adulthood. Findings suggest the need to better understand the impact of multilevel risk and protective factors on depressive symptoms trajectories for individuals with asthma, especially marginalized populations.

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).

Decisional Regret Among Caregivers of Infants with Differences of Sex Development Reared as Male.

OBJECTIVE: Differences of sex development (DSD) are congenital conditions in which individuals are discordant in their chromosomal, phenotypic, and/or gonadal sex. Treatment of DSD can involve surgical intervention to external genitalia to make anatomy seem male-typical (i.e., male genitoplasty). Caregiver-perceived decisional regret regarding young boys with DSD was explored quantitatively and qualitatively. METHOD: Participants (N = 39) were caregivers of infants (N = 23) diagnosed with DSD (mean age = 8.9 months, standard deviation = 5.9 months) reared male participating in a longitudinal investigation of psychosocial outcomes. Qualitative data were collected at 6 to 12 months after baseline enrollment to evaluate caregiver decision-making corresponding to levels of regret concerning their child's treatment. All but one infant received genital surgery before caregiver reporting on their decisional regret. Quantitative exploratory analyses evaluated longitudinal predictors of decisional regret at 6 to 12 months. RESULTS: When completing a write-in item inquiring about decision-making and potential regret, most caregivers (n = 16, 76%) reported that their child's genital surgery was their first medical decision. Two caregivers referenced gender assignment as a decision point. One-third of caregivers reported some level of decisional regret (33%), with 67% reporting no regret. No hypothesized predictors of decisional regret were statistically significant. CONCLUSION: Many caregivers of infants with DSD reared male view genital surgery as a first health care decision. Approximately one-third of caregivers reported some level of decisional regret. Further research is warranted to explore long-term decisional regret; it will be particularly important to investigate the decisional regret of patients with DSD.

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.

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.

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.

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.

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.