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1.
PLoS One ; 19(6): e0304630, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38870107

RESUMEN

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. OBJECTIVES: The study will test two primary hypotheses. First, toddlers randomized to BOOST will exhibit better language outcomes than children receiving standard-of-care (SOC). Second, we hypothesize that the BOOST program's effect on language outcomes is mediated by the frequency and quality of parent-child reading interactions. METHODS: The study is a randomized-controlled trial comparing the BOOST group to a SOC comparison group. We will enroll N = 320 English and/or Spanish-speaking children ages 24-32 months with isolated CP±L (n = 160 per group). Both groups will receive children's books, and parents will record and upload videos of themselves reading the books with their children using a smartphone app developed for the study. Parents will also complete surveys asking whether they read to their children on five randomly selected days each week. In addition, the BOOST group will participate in 3 remote dialogic book-sharing intervention sessions via Zoom. We will code book-sharing videos to assess parents' target skill usage and children's expressive language. End-of-study assessments will include measures of child language outcomes (e.g., clinician-administered measures, parent reports, and naturalistic child language samples). RESULTS: Enrollment began in April 2024 and will continue through approximately April 2028. CONCLUSION: The BOOST study will address a critical gap in the literature on interventions to improve language in children with CP±L. The results will inform the care for toddlers with oral clefts and have potential applications for other populations.


Asunto(s)
Fisura del Paladar , Desarrollo del Lenguaje , Humanos , Preescolar , Masculino , Femenino , Labio Leporino , Libros , Lectura , Padres , Relaciones Padres-Hijo
2.
J Pediatr Psychol ; 2024 Jun 12.
Artículo en Inglés | MEDLINE | ID: mdl-38867313

RESUMEN

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 ± 3.7 years; 56% assigned female in infancy) using psychometrically sound instruments. A subsample (n = 40) completed qualitative interviews. RESULTS: Quantitative results indicated that overall, participants were satisfied with their physical appearance, although less so with their primary sex characteristics. Body image dissatisfaction was associated with poorer psychosocial adjustment, quality of life, and resilience. Qualitatively, youth and young adults reported a variety of perceptions, both positive and negative, related to their body image and the impact of living with a DSD condition. Themes identified included appearance management; effects of DSD on body image; diagnostic factors and features; attitudes about diagnosis; and treatment. CONCLUSIONS: Body image is significantly associated with psychosocial outcomes in youth and young adults with DSD, with qualitative findings highlighting both positive and negative body image experiences. Results have implications for clinical care including screening for appearance concerns, normalization of appearance variations, and intervention development to better support healthy body image and psychosocial functioning in youth and young adults with DSD.

3.
Cleft Palate Craniofac J ; : 10556656241245284, 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38584503

RESUMEN

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. DESIGN: Caregivers reported on their child's medical and surgical history. Narrative interviews were conducted with US caregivers (n = 62) of children aged 3-17 years with CFM. Transcripts were inductively coded and final themes and subthemes were identified. RESULTS: Components of the framework included: 1) Diagnostic Experiences, including pregnancy and birth, initial emotional responses, communication about the diagnosis by healthcare providers, and information-seeking behaviors; 2) Child Health and Healthcare Experiences, including feeding, the child's physical health, burden of care, medical decision-making, surgical experiences, and the perceived quality of care; 3) Child Development, including cognition and behavior, educational provision, social experiences, and emotional well-being; and 4) Family Functioning, including parental well-being, relationships, coping strategies, and personal growth. Participants also identified a series of "high" and "low" points throughout their journey and shared their priorities for future research. CONCLUSIONS: Narrative interviews provided rich insight into caregivers' experiences of having a child with CFM and enabled the development of a conceptual thematic framework to guide clinical care and future research. Information gathered from this study demonstrates the need to incorporate evidence-based psychological support for families into the CFM pathway from birth onward.

4.
Patient Educ Couns ; 125: 108294, 2024 Aug.
Artículo en Inglés | MEDLINE | ID: mdl-38669761

RESUMEN

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). RESULTS: Participants reported high levels of satisfaction with healthcare communication. Higher healthcare communication satisfaction was associated with greater resilience (p = .01), better QoL (p = .02), and fewer internalizing problems (p = .04). For adolescents, higher healthcare communication satisfaction was associated with better psychosocial outcomes (p values ranging from.01-.04). No significant associations were found in the young adult group. CONCLUSIONS: Satisfaction with healthcare communication is related to positive psychosocial outcomes in adolescents with DSD. PRACTICE IMPLICATIONS: These data underscore the importance of optimizing communication with families, engaging AYA in early and ongoing discussions about their care, and including psychosocial providers in DSD care.


Asunto(s)
Comunicación , Satisfacción del Paciente , Calidad de Vida , Humanos , Adolescente , Femenino , Masculino , Adulto Joven , Adulto , Calidad de Vida/psicología , Trastornos del Desarrollo Sexual/psicología , Niño , Adaptación Psicológica , Encuestas y Cuestionarios , Resiliencia Psicológica
5.
J Cardiovasc Nurs ; 2024 Mar 13.
Artículo en Inglés | MEDLINE | ID: mdl-38488386

RESUMEN

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. METHODS: Young adults with CHD (N = 138) completed the Body Image Disturbance Questionnaire along with other patient-reported outcome measures. RESULTS: Scores on the Body Image Disturbance Questionnaire were lower (mean, 1.3 ± 0.5) than populations with diabetes amputations, craniofacial conditions, idiopathic scoliosis, and clinical controls. Higher Body Image Disturbance Questionnaire scores were reported among women (P = .003) and were associated with greater anxiety (P = .000) and depression (P = .13) after controlling for sex. CONCLUSIONS: Body image concerns related to cardiac surgery scarring are especially prominent in women and associated with greater emotional distress, suggesting potential clinical relevance for evaluating body image concerns in persons with CHD.

6.
Cleft Palate Craniofac J ; : 10556656241234562, 2024 Feb 21.
Artículo en Inglés | MEDLINE | ID: mdl-38380879

RESUMEN

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. PARTICIPANTS: Children with craniosynostosis who underwent surgical correction, and who were 2-7 years old at the time of the study. Children from families that did not speak English were excluded. INTERVENTIONS: Caregivers were asked to fill out the Pediatric Quality of Life Inventory (PedsQL) Core Parent Report and the PedsQL Cognitive Functioning Scale. MAIN OUTCOME MEASURES: PedsQL: Psychosocial Health Summary Score, Physical Health Summary Score, Total Core Score, Cognitive Functioning Scale Score. Scores range from 0 to 100, with higher scores reflecting greater QoLSubject factors: comorbidities, syndromic status, type of craniosynostosis, type of surgery. RESULTS: The study included 53 subjects, of whom 13.2% had a syndrome. Core and cognitive scores did not depend on presence of a syndrome or suture involved. Subjects who underwent posterior cranial distraction achieved higher Total Core Scores than subjects who underwent open vault remodeling. Among subjects with sagittal craniosynostosis, there was a tendency for higher scores among children who underwent minimally-invasive surgery compared to those who underwent open vault remodeling. CONCLUSIONS: This study demonstrates similar HRQL among children with and without a syndrome, higher HRQL among children undergoing posterior cranial distraction than those undergoing open vault remodeling, and trends towards higher HRQL in children with sagittal craniosynostosis who underwent minimally-invasive surgery compared to those who underwent open vault remodeling.

7.
J Obstet Gynecol Neonatal Nurs ; 53(3): 296-307, 2024 05.
Artículo en Inglés | MEDLINE | ID: mdl-38320743

RESUMEN

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. PARTICIPANTS: Parents of 28 children with CFM from across the United States. METHODS: We interviewed participants (27 mothers individually and one mother and father together) via telephone or teleconference and used reflexive thematic analysis to derive themes that represented early health care experiences of parents of children with CFM. RESULTS: Participants' narratives included detailed recounting of their birth and early care experiences. We identified two overarching themes. The first overarching theme, Stressors, included four subthemes that represented difficulties related to emotional reactions and negative experiences with health care providers. The second overarching theme, Finding Strength, included four subthemes that represented participants' positive adjustment to stressors through independent information seeking about CFM, adaptive coping, positive experiences with health care providers, and drawing on external supports. CONCLUSION: Participants often described early experiences as challenging. Findings have implications for improving early care, including increasing open and supportive communication by health care professionals, expanding access to CFM information, screening for mental health concerns among parents, strengthening coping among parents, and linking families to resources such as reliable online CFM information and early intervention programs.


Asunto(s)
Adaptación Psicológica , Padres , Investigación Cualitativa , Humanos , Femenino , Masculino , Padres/psicología , Adulto , Estados Unidos , Síndrome de Goldenhar/psicología , Síndrome de Goldenhar/diagnóstico , Estrés Psicológico/psicología , Niño , Recién Nacido , Preescolar , Lactante
8.
Cleft Palate Craniofac J ; 61(1): 68-78, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-35892129

RESUMEN

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.Children (n = 391) with cleft lip and/or palate, ages 8 to 10 years of age (192 male) and their guardians were recruited during regular clinic visits.Parent and child ratings on the Pediatric Quality of Life Inventory (PedsQL) School Scale, child report on CleftQ School Scale, parent report on the Adaptive Behavior Assessment System-Third Edition Functional Academics (ABAS-FA) Scale and Child Behavior Checklist (CBCL) School Competency Scale, parent interview, and medical chart review.Risk for concerns ranged from 12% to 41%, with higher risk reflected on the CBCL-SC compared to other measures. Males with cleft palate were consistently at the highest risk. Only 9% of the sample had a parent-reported diagnosis of a learning or language disability. Ratings from the ABAS-FA and CBCL-SC had the highest utility in identifying those with language and/or learning concerns.As cleft teams work to develop standardized batteries for screening and monitoring of patients, it is important to evaluate the effectiveness of measures in identifying those at highest risk. When screening for language and learning disorders, questions related to potential academic struggles, such as increased school effort or increased school distress, are most useful. Referrals for follow-up evaluation are recommended for those identified at high risk.


Asunto(s)
Labio Leporino , Fisura del Paladar , Niño , Humanos , Masculino , Calidad de Vida , Estudios Retrospectivos , Estudiantes , Femenino
9.
Cleft Palate Craniofac J ; : 10556656231181581, 2023 Jun 22.
Artículo en Inglés | MEDLINE | ID: mdl-37350106

RESUMEN

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. PARTICIPANTS: Children, ages 8.0-10.99 years, with Cleft Lip ± Alveolus, Cleft Palate, Cleft Lip and Palate, and parents (N = 284). OUTCOME MEASURES: Pediatric QoL Inventory (PedsQL): Parent, Child, Family Impact Module (FIM); Patient Reported Outcome Measurement Information System (PROMIS); Child Behavior Checklist (CBCL); CLEFT-Q. RESULTS: Outcome scores were average with few differences by cleft type. Multiple regression analyses yielded significant associations (Ps < .05) between socioeconomic status, race, and age at assessment and parent- and self-reported measures. Females had higher PROMIS Depression (ß=.20) but lower CBCL Affective (ß = -.16) and PROMIS Stigma scores (ß= -.24). Incomplete cleft lip was associated with lower PROMIS Depression, and more positive ratings of CLEFT-Q: Nose, Nostril, Lip Scar; CBCL Competence scores, (ßs = -.17 to .17). Younger Age at Lip Closure was associated with higher CBCL School Competence (ß= -.18). Younger Age at Palate Closure was associated with higher Child PedsQL Total, Physical, Psychosocial QoL, and better CLEFT-Q Speech Function (ßs = -.18 to -.15). Furlow Palatoplasty was associated with more CBCL Externalizing Problems (ß = .17) higher CBCL Activities (ß = .16). For all diagnoses, fewer Total Cleft-Related Surgeries was associated with lower PROMIS Stigma and higher CBCL Total Competence and Activities (ßs = -.16 to .15). CONCLUSIONS: Demographic characteristics, lip morphology, and treatment variables are related to later psychological functioning.

10.
Cleft Palate Craniofac J ; : 10556656231176904, 2023 May 29.
Artículo en Inglés | MEDLINE | ID: mdl-37248561

RESUMEN

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. DESIGN: The Craniofacial microsomia: Accelerating Research and Education (CARE) research program aims to: 1) Conduct up to 160 narrative interviews with individuals and caregivers to validate a conceptual framework; 2) Administer an online international survey of up to 800 individuals with CFM and caregivers to identify predictors of psychological distress; 3) Perform up to 60 semi-structured interviews with healthcare providers and advocacy leaders to examine the extent to which current healthcare provisions address identified patient needs; and 4) Establish a participant registry to build a longitudinal database and develop an international community. RESULTS: Teams in the USA and UK have been established, alongside an international, interdisciplinary Advisory Committee. Data analysis for Aim 1 is ongoing and informing the delivery of Aims 2-3. Aim 4 is also in development. A dedicated website serves as a recruitment tool, educational resource, and mechanism for engaging with the CFM community. CONCLUSIONS: The CARE program provides a comprehensive approach to understanding the experiences of individuals with CFM and their caregivers. Challenges encountered and lessons learned are shared for the benefit of the community.

12.
Am J Med Genet A ; 191(4): 962-976, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36608170

RESUMEN

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. This multicenter chart review study examined the prevalence, risk factors for, and management of NC and MHC in a cohort of 631 patients with TS from three pediatric academic medical centers. NC and/or MHC were documented for 48.2% of patients. Neuropsychological evaluation recommendations were documented for 33.9% of patients; 65.4% of the sample subsequently completed these evaluations. Mental health care recommendations were documented in 35.0% of records; subsequent documentation indicated that 69.7% of these patients received such services. Most notably, rates of documented MHC, NC, and related referrals differed significantly by site, suggesting the need for standardized screening and referral practices. TS diagnosis in early childhood was associated with an increased risk of NC. Spontaneous menarche was associated with increased risk of MHC. Younger age at growth hormone initiation was associated with both increased risk of isolated NC and co-occurring NC and MHC. Mosaic karyotype was associated with decreased risk of NC and MHC.


Asunto(s)
Síndrome de Turner , Femenino , Niño , Preescolar , Humanos , Adolescente , Síndrome de Turner/diagnóstico , Salud Mental , Menarquia , Cariotipo , Cariotipificación
13.
J Clin Psychol Med Settings ; 30(1): 72-79, 2023 03.
Artículo en Inglés | MEDLINE | ID: mdl-35486337

RESUMEN

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. The program provides research skill training, mentorship, professional development, and graduate school preparation to employed clinical research coordinators. An early program assessment, based on self-reports, revealed the program attracts diverse participants that are primarily interested in pediatric or child psychology and rate themselves as "somewhat confident" in their current research skills. This manuscript summarizes the three phases of development and key components of the post-baccalaureate program, which can serve as a model to other medical centers interested in developing training programs for research staff, particularly underrepresented racial and ethnic minorities, and those from disadvantaged backgrounds.


Asunto(s)
Instituciones Académicas , Estudiantes , Humanos , Niño , Evaluación de Programas y Proyectos de Salud , Centros Médicos Académicos
14.
Cleft Palate Craniofac J ; 60(11): 1474-1483, 2023 11.
Artículo en Inglés | MEDLINE | ID: mdl-35675171

RESUMEN

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, 82.0% female) across 6 sites completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL).Intraclass correlation revealed poor interrater agreement for most HRQoL domains. Although ratings were generally higher than those expected for children with a chronic illness, child ratings were below healthy means for school functioning, and parent proxy ratings were below healthy means for all domains except physical functioning. Lower ratings consistent with chronic illness means were found for self-reported emotional and psychosocial functioning in children with cleft lip and palate (CLP), as well as parent proxy-reported emotional, school, and psychosocial functioning for children with cleft palate (CP). Scores were most likely to be in the clinical range for children with CP for social, school, and total functioning.Although parent proxy report provides important information about observed functioning, poor interrater agreement indicates that both child and parent proxy reported HRQoL should be included in outcomes assessment for CL/P. HRQoL ratings may be higher for children with CL/P compared to youth with other chronic illnesses, but psychosocial functioning may be negatively impacted when compared with healthy youth, particularly for emotional, social, and school functioning in children with CLP or CP.


Asunto(s)
Labio Leporino , Fisura del Paladar , Adolescente , Niño , Humanos , Masculino , Femenino , Calidad de Vida/psicología , Labio Leporino/psicología , Fisura del Paladar/psicología , Estudios de Cohortes , Padres/psicología , Enfermedad Crónica
15.
Cleft Palate Craniofac J ; 60(9): 1090-1112, 2023 09.
Artículo en Inglés | MEDLINE | ID: mdl-35382590

RESUMEN

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. Data were generally collected from both patients and caregivers (38%) or patient self-report (35%). Sample sizes were 11 to 25 (21%), 26 to 50 (19%), 51 to 100 (22%), or over 100 (38%). Studies addressed 5 primary topics: (1) Healthcare Experiences, including Medical Care, Hearing Loss/Amplification, Diagnostic Experiences, and Information Preferences; (2) Psychosocial Experiences, including Teasing, Behavioral Adjustment, Psychosocial Support, and Public Perception; (3) Neurocognitive Functioning and Academic Assistance; (4) Pre- and Post-Operative Psychosocial Outcomes of Ear Reconstruction/Canaloplasty; and (5) Quality of Life and Patient Satisfaction.Care involved multiple specialties and was often experienced as stressful starting at diagnosis. Psychosocial and neurocognitive functioning were generally in the average range, with possible risk for social and language concerns. Coping and resiliency were described into adulthood. Satisfaction and positive benefit of ear reconstruction/canaloplasty were high. Care recommendations include increasing: hearing amplification use, microtia and CFM knowledge among providers, efficient treatment coordination, psychosocial support, academic assistance, and advances to minimize surgical scarring. This broad literature overview informs clinical practice and research to improve psychosocial outcomes.


Asunto(s)
Microtia Congénita , Síndrome de Goldenhar , Humanos , Estados Unidos , Síndrome de Goldenhar/psicología , Calidad de Vida , Estudios Transversales , Adaptación Psicológica
16.
MCN Am J Matern Child Nurs ; 47(3): 160-167, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35475926

RESUMEN

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.g., Facebook). RESULTS: Women (n = 187) reported themselves and society as the greatest sources of pressure. Pressure to breastfeed was negatively associated with the breastfeeding experience (r = -.34, p < .01) and self-efficacy (r = -.39, p < .01), but not emotional distress. Pressure to breastfeed remained a significant explanatory factor, even when considering demographic covariates, with the final models accounting for 16% and 20% of the variance in the breastfeeding experience and self-efficacy, respectively. CLINICAL IMPLICATIONS: Perceived pressure to breastfeed may be an important psychosocial factor to consider when aiming to improve women's breastfeeding experiences. Reducing perceived pressure may be beneficial for promoting breastfeeding outcomes.


Asunto(s)
Lactancia Materna , Madres , Lactancia Materna/psicología , Estudios Transversales , Femenino , Humanos , Lactante , Masculino , Madres/psicología , Autoeficacia , Encuestas y Cuestionarios
17.
Horm Res Paediatr ; 95(4): 321-330, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-35413716

RESUMEN

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. METHODS: TS providers were invited to complete a survey via the Pediatric Endocrine Society listserv. Descriptive statistics summarized variables of interest. Correlations were used to identify associations between barriers/practice characteristics and fertility preservation (FP) referral. Thematic analysis was used to examine qualitative responses. RESULTS: 119 providers completed the survey. Seventy percent reported discussing fertility implications of TS routinely in pediatric care. Fifty-six percent reported often or always referring patients with spontaneous menarche to FP specialists, whereas only 19% reported often or always referring their patients without spontaneous menarche (p < 0.001). Barriers associated with FP referral frequency included unfamiliarity with FP options, belief that FP is not a possible goal for their patients, and absence of a local reproductive endocrinologist. Qualitatively, four referral barrier themes were identified: (1) questionable utility of referral, (2) lack of perceived interest among patients/families, (3) provider barriers (e.g., lack of knowledge), (4) logistical/structural barriers to accessing fertility-related care. DISCUSSION/CONCLUSION: Pediatric endocrinology providers report inconsistently discussing fertility implications of TS. The frequency of referral to an FP specialist and factors/barriers affecting the decision to refer remain variable. Future research should focus on expanding provider education, addressing barriers to high-quality fertility counseling and referral for patients with TS, and investigating FP outcomes in TS.


Asunto(s)
Preservación de la Fertilidad , Neoplasias , Síndrome de Turner , Adolescente , Niño , Consejo , Femenino , Preservación de la Fertilidad/métodos , Preservación de la Fertilidad/psicología , Humanos , Derivación y Consulta , Encuestas y Cuestionarios , Síndrome de Turner/terapia
18.
Body Image ; 41: 109-127, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35247866

RESUMEN

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. Four items assessing sexuality-related body image were completed by 11,620 U.S. adults: self-perceived sex appeal of their body, nude appearance satisfaction, and the extent to which they believed that body image positively or negatively affected their sexual enjoyment and feelings of sexual acceptability as a partner. Men reported slightly less nude appearance dissatisfaction and fewer negative effects of body image on sexual enjoyment and sexual acceptability than women, but did not differ in reported sex appeal. Poorer sexuality-related body image was reported by people with higher BMIs, not in relationships, who had sex less frequently, among White compared to Black women and men, and among gay compared to heterosexual men. Data also revealed a subgroup of respondents who reported that their body image had a positive impact on their sex lives. The findings highlight a need for interventions addressing sexuality-related body image.


Asunto(s)
Imagen Corporal , Sexualidad , Adulto , Imagen Corporal/psicología , Demografía , Femenino , Heterosexualidad , Humanos , Masculino , Satisfacción Personal , Conducta Sexual
19.
Body Image ; 41: 84-96, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35247867

RESUMEN

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. Structural equation modeling supported the model. Family, peer, and media pressures related to higher lean-ideal internalization, which related to higher body surveillance and poorer body image outcomes. Peer and media pressures related to higher muscular-ideal internalization, which related to higher body surveillance but more adaptive body image outcomes. We further examined whether model variables and paths differed based on men's body mass index (BMI). Men with higher BMIs evidenced a stronger path between body surveillance and body image outcomes. These findings highlight the usefulness of sociocultural models for understanding men's body image experiences.


Asunto(s)
Imagen Corporal , Satisfacción Personal , Imagen Corporal/psicología , Femenino , Humanos , Masculino , Hombres , Grupo Paritario , Calidad de Vida
20.
Body Image ; 41: 181-194, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35272100

RESUMEN

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.e., monitoring of one's appearance due to objectification by others) would be strongest for groups targeted by the male gaze (e.g., gay men, lesbian women, and bisexual men and women). Here we proposed an integrated sociocultural model and examined these pathways in multigroup structural equation models in a national sample of heterosexual, bisexual, and lesbian women (ns = 5395; 598; 213, respectively), and heterosexual, bisexual, and gay men (4869; 194; and 194, respectively) aged 18-65 years. Sexual orientation moderated some of these pathways. The most consistent pattern was that appearance pressures were internalized to a greater extent among bisexual participants. The pathways to poorer body image were generally similar among heterosexual and gay/lesbian men and women. These findings highlight the importance of examining sexual orientation-specific influences on body image across diverse groups, as well as the commonalities in the experiences of men and women across sexual orientations.


Asunto(s)
Homosexualidad Femenina , Minorías Sexuales y de Género , Imagen Corporal/psicología , Femenino , Heterosexualidad , Humanos , Masculino , Conducta Sexual
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