CleftTok: An Analysis of Cleft-Related Content on TikTok.

To analyze the content and sources of TikTok posts regarding cleft conditions; to examine the quality and reliability of educational content related to cleft conditions. Cross-sectional, observational study of cleft-related TikTok content. N/A.

Book-Sharing for Toddlers with Clefts (BOOST): Protocol for a randomized controlled trial of a remote intervention to promote language development in children with cleft palate.

Background: Children with cleft palate, with or without cleft lip (CP±L), exhibit language delays on average compared to children without clefts. Interventions to address these disparities are scarce. In this multi-center study, Book Sharing for Toddlers with Clefts (BOOST), we will test a remote, parent-focused intervention to promote language development in children with CP±L.

Body image and psychosocial outcomes in youth and young adults with differences of sex development: a multi-method study.

Objective: Differences of sex development (DSD) can affect the physical health, appearance, and psychosocial functioning of affected individuals, but little is known about how subjective appearance perceptions (body image) impact psychosocial outcomes. This study evaluated body image and its associations with psychosocial outcomes including quality of life, resilience, and psychosocial adjustment.

Methods: This cross-sectional, multi-method study assessed body image and psychosocial outcomes including quality of life, adjustment, and resilience in 97 youth and young adults with DSD (mean age = 17 ± 3.

Healthcare communication satisfaction and psychosocial outcomes in adolescents and young adults with differences of sex development.

Objectives: We examined: (1) healthcare communication satisfaction and psychosocial outcomes (resilience, QoL, and psychological adjustment) in adolescents and young adults (AYA) with differences of sex development (DSD), (2) differences in psychosocial outcomes between those who were highly satisfied and those who were less satisfied, and (3) group differences between adolescents (ages 12-17) and young adults (ages 18-26) regarding associations with healthcare communication and psychosocial outcomes.

Methods: AYA with DSD across four study sites reported on satisfaction with healthcare communication and psychosocial outcomes. Analyses included descriptive statistics (aim 1), independent samples t-tests (aim 2), and Pearson's correlations (aim 3).

A Conceptual Thematic Framework of Psychological Adjustment in Caregivers of Children with Craniofacial Microsomia.

Objective: Children with craniofacial microsomia (CFM) have complex healthcare needs, resulting in evaluations and interventions from infancy onward. Yet, little is understood about families' treatment experiences or the impact of CFM on caregivers' well-being. To address this gap, the NIH-funded 'Craniofacial microsomia: Accelerating Research and Education (CARE)' program sought to develop a conceptual thematic framework of caregiver adjustment to CFM.

Implications of Cardiac Scarring on Body Image Disturbance Among Young Adults With Congenital Heart Defects.

Background: Many individuals with congenital heart disease (CHD) undergo open heart surgery, resulting in prominent scarring. However, little research has assessed the impact of surgical scarring on body image in this population.

Objective: Within this cross-sectional study, associations between body image concerns, anxiety and depression symptoms, and health-related quality of life among individuals with CHD were evaluated.

Prospective Evaluation of Health-Related Quality-of-Life in Children with Craniosynostosis.

Objective: To investigate health-related quality of life (HRQL) in children aged 2 to 7 years, who have undergone surgery for craniosynostosis.

Design: Cross-sectional survey.

Setting: A tertiary pediatric academic medical center.

Early Experiences of Parents of Children With Craniofacial Microsomia.

Objective: To describe the early health care experiences of parents of children with craniofacial microsomia (CFM), a congenital diagnosis often identified at birth.

Design: Qualitative descriptive.

Setting: Homes of participants.

Psychosocial Outcomes in Children with Cleft Lip and/or Palate: Associations of Demographic, Cleft Morphologic, and Treatment-Related Variables.

Objective: To determine associations of demographic, morphologic, and treatment protocol parameters with quality of life (QoL), appearance/speech satisfaction, and psychological adjustment.

Design: Observational study utilizing retrospective report of protocol variables and current outcome variables.

Setting: Six North American cleft treatment clinics.

Establishing an International Interdisciplinary Research Network in Craniofacial Microsomia: The CARE Program.

Objective: Craniofacial microsomia (CFM) is a broad clinical term used to describe a congenital condition most commonly involving the underdevelopment of the external ear, mandible, soft tissues, and facial nerve. Despite medical advances, understanding of the psychological health and healthcare experiences of individuals with CFM and their caregivers remains limited. This article describes a research program designed to address these knowledge gaps, and identify opportunities for psychosocial intervention and improved healthcare provision.

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.

Screening for Academic Risk Among Students With Cleft Lip and/or Palate: Patterns of Risk and Qualities of Effective Tools.

This study evaluated the effectiveness of academic screening measures in relation to parent-reported diagnoses. Multicenter, retrospective cohort study including structured interviews, questionnaires, and chart reviews. Six North American cleft centers.

A Multisite Study Investigating Child and Parent Proxy Reported Quality of Life in Children With Cleft Lip and/or Palate.

This observational, multisite cohort study explored health-related quality of life (HRQoL) in children with cleft lip and/or palate (CL/P), including interrater agreement and ratings for this group relative to clinical cutoff scores and published means for healthy and chronically ill children. Participants (338 children ages 8-10 years, 45.9% male and their parents, 82.

Implementation of a Post-Baccalaureate Program at a Pediatric Academic Medical Center: A Pathway to Graduate School.

Post-baccalaureate programs are increasingly common and have demonstrated success in preparing students for graduate programs. Most post-baccalaureate programs have a pre-medical focus, and the few existing clinical psychology-focused programs are centered on coursework, situated within a university, costly to students, and/or geared towards career change. The post-baccalaureate program at Nationwide Children's Hospital was created in 2017 and is uniquely positioned within a pediatric academic medical center.

New Mothers' Perceptions of Pressure to Breastfeed.

Purpose: Develop a measure to quantitatively assess perceived pressure to breastfeed and examine associations between perceived pressure, emotional distress, and the breastfeeding experience and self-efficacy among women with 2- to 6-month-old infants.

Study Design And Methods: A cross-sectional study using an online survey to assess perceived pressure to breastfeed, emotional distress, and the breastfeeding experience and self-efficacy was conducted. Participants were recruited through ResearchMatch, a national online service that matches potential participants to research studies, and online community forums (e.

Fertility Counseling Practices for Patients with Turner Syndrome in Pediatric Endocrine Clinics: Results of a Pediatric Endocrine Society Survey.

Introduction: Turner syndrome (TS) is associated with a high risk of primary ovarian insufficiency. Current guidelines recommend early fertility counseling for affected youth and their families. This study assessed clinical providers' (MD, NP, or PA) fertility counseling practices for girls with TS.

Psychosocial and Health-Related Experiences of Individuals With Microtia and Craniofacial Microsomia and Their Families: Narrative Review Over 2 Decades.

This paper describes 20 years of microtia and craniofacial microsomia (CFM) psychosocial and healthcare studies and suggests directions for clinical care and research. A narrative review of papers January 2000 to July 2021 related to psychosocial and healthcare experiences of individuals with microtia and CFM and their families. Studies (N = 64) were mainly cross-sectional (69%), included a range of standardized measures (64%), and were with European (31%), American (27%), or multinational (23%) samples.

Surgical experiences in adolescents and young adults with differences of sex development: A qualitative examination.

Background: Surgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades.

Fertility Discussions: Perspectives of Adolescents and Young Adults With Differences of Sex Development.

Objective: Fertility-related health care and decision-making needs for youth with differences of sex development (DSD) are complex and vary by condition and the values and preferences of each individual and their partner and/or family. Discussing fertility implications can be a challenging aspect of clinician and family communication about a DSD diagnosis. This qualitative study assesses fertility-related communication experiences of adolescents and young adults (AYA) with DSD.

Pathways from sociocultural and objectification constructs to body satisfaction among women: The U.S. Body Project I.

Objectification theory proposes that widespread sexualization causes women to engage in surveillance of their appearance. We integrated this concept into a model with constructs from the tripartite influence model, which proposes that body dissatisfaction is a result of internalizing cultural notions of thin ideal beauty that stem from family, peer, and media appearance-related pressures. We tested this model with an online sample of 6327 adult women.

Sexual orientation differences in pathways from sociocultural and objectification constructs to body satisfaction: The U.S. Body Project I.

Objectification theory and the tripartite influence model provide useful frameworks for understanding the body image experiences of men and women. However, there is little systematic investigation of how sexual orientation moderates the links between these constructs and body image satisfaction. It has been hypothesized, for example, that the associations of surveillance (i.

Racial identity differences in pathways from sociocultural and objectification constructs to body satisfaction: The U.S. Body Project I.

Racial minority men and women face a wide variety of appearance-related pressures, including ones connected to their cultural backgrounds and phenotypic features associated with their identity. These body image concerns exist within a larger context, wherein racial minorities face pressures from multiple cultures or subcultures simultaneously to achieve unrealistic appearance ideals. However, limited research has investigated racial differences in the relationships between theorized sociocultural risk factors and body image in large samples.

Pathways from sociocultural and objectification constructs to body satisfaction among men: The U.S. Body Project I.

According to the tripartite influence model, body dissatisfaction is shaped by internalizing cultural appearance ideals stemming from appearance-related family, peer, and media pressures. This model was developed for women, but emerging evidence points to its relevance for men's body image. This study advanced this budding research by (a) integrating muscular-ideal internalization alongside lean-ideal internalization and body surveillance into the model, (b) examining two positive dimensions of body image as outcomes (body image quality of life and appearance evaluation), and (c) testing this model in national online sample of 5293 men.

Demographic and sociocultural predictors of sexuality-related body image and sexual frequency: The U.S. Body Project I.

Body image is a critical component of an individual's sexual experiences. This makes it critical to identify demographic and sociocultural correlates of sexuality-related body image: the subjective feelings, cognitions, and evaluations related to one's body in the context of sexual experience. We examined how sexuality-related body image differed by gender, sexual orientation, race, age, and BMI.