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.

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.

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.

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

Investigate the sleep hygiene and quality of emerging adults with a CMC compared to healthy peers as well as potential predictors of sleep quality. College students with and without a CMC ( = 137 per group; aged 18-23 years) at a Midwestern university. Participants reported on anxious and depressive symptoms, sleep quality, sleep hygiene, and illness uncertainty.

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.

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.

Neuropsychological and mental health concerns in a multicenter clinical sample of youth with turner syndrome.

Clinical practice guidelines for individuals with Turner syndrome (TS) recommend screening for neuropsychological concerns (NC) and mental health concerns (MHC). However, current provider screening and referral patterns for NC and MHC are not well characterized. Additionally, prevalence of and risk factors for NC and MHC vary across studies.

Quality of Life in Adolescents and Young Adults With a Chronic Medical Condition: The Role of Perceived Maturity and Transition Readiness.

Introduction: Adolescents and young adults (AYA) with a chronic medical condition (CMC) attending college must learn to manage their own healthcare (i.e., transition readiness).

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.

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.

Parent-Adolescent Concordance Regarding Fertility Perspectives and Sperm Banking Attempts in Adolescent Males With Cancer.

Objective: Approximately half of male childhood cancer survivors experience impaired fertility, yet fertility preservation (FP) remains underutilized. Although parent recommendation influences adolescents' decision-making, parents may be uncertain and/or underrate their sons' parenthood goals. This study assessed parent-adolescent and family-level concordance regarding adolescent fertility perspectives (i.

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.

Impact of a novel family-centered values clarification tool on adolescent sperm banking attempts at the time of a new cancer diagnosis.

Purpose: Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts.

Parent-Child Communication and Reproductive Considerations in Families with Genetic Cancer Predisposition Syndromes: A Systematic Review.

Uptake of genetic testing for heritable conditions is increasingly common. In families with known autosomal dominant genetic cancer predisposition syndromes (CPS), testing youth may reduce uncertainty and provide guidance for future lifestyle, medical, and family building considerations. The goals of this systematic review were to examine: (1) how parents and their children, adolescents, and young adults (CAYAs) communicate and make decisions regarding testing for CPS and (2) how they communicate and make decisions about reproductive health/family building in the context of risk for CPS.