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1.
Dela J Public Health ; 10(1): 30-38, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38572140

RESUMO

Objective: To describe the process of engaging community, caregiver, and youth partners in codeveloping an intervention to promote equitable uptake of the COVID-19 vaccine in non-Hispanic Black (Black) and Hispanic youth who experience higher rates of COVID-19 transmission, morbidity, and mortality but were less likely to receive the COVID-19 vaccine. Methods: A team of 11 Black and Hispanic community partners was assembled to codevelop intervention strategies with our interdisciplinary research team. We used a mixed-methods crowdsourcing approach with Black and Hispanic youth (n=15) and caregivers of Black and Hispanic youth (n=20) who had not yet been vaccinated against COVID-19, recruited from primary care clinics, to elicit perspectives on the acceptability of these intervention strategies. Results: We codeveloped five strategies: (1) community-tailored handouts and posters, (2) videos featuring local youth, (3) family-centered language to offer vaccines in the primary care clinic, (4) communication-skills training for primary care providers, and (5) use of community health workers to counsel families about the vaccine. The majority (56-96.9%) of youth and caregivers rated each of these strategies as acceptable, especially because they addressed common concerns and facilitated shared decision-making. Conclusions: Engaging community and family partners led to the co-development of culturally- and locally-tailored strategies to promote dialogue and shared decision-making about the COVID-19 vaccine. This process can be used to codevelop interventions to address other forms of public health disparities. Policy Implications: Intervention strategies that promote dialogues with trusted healthcare providers and support shared decision-making are acceptable strategies to promote COVID-19 vaccine uptake among youth from historically underserved communities. Stakeholder-engaged methods may also help in the development of interventions to address other forms of health disparities.

2.
J Patient Exp ; 11: 23743735241229374, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38414756

RESUMO

User-centered models for the development of digital health interventions are not consistently applied in healthcare settings. This study used a five-phase, user-centered approach to develop HEARTPrep©, a psychosocial intervention delivered via mobile app and telehealth to mothers expecting a baby with congenital heart disease (CHD) to promote maternal, family, and child well-being. Phases of intervention development were: (I) establishing partnerships; (II) creating content; (III) developing prototype and testable intervention; (IV) conducting think-aloud testing; and (V) completing beta testing. Partnerships with parents, clinicians, and design/technology experts were integral throughout the development of HEARTPrep©. Parents of children with CHD also served as participants in Phases II-V, contributing to the creation of content and providing feedback to inform the iterative refinement of HEARTPrep©. These five phases produced a refined digital health intervention with promising feasibility, usability, and acceptability results. This user-centered approach can be used to develop digital health interventions targeting various health outcomes.

3.
J Pediatr Adolesc Gynecol ; 37(1): 45-50, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37871845

RESUMO

STUDY OBJECTIVE: To describe the demographic characteristics and psychological symptoms of gender-diverse patients and to compare symptoms between prepubertal and pubertal subgroups METHODS: This was a retrospective chart review of all gender-diverse patients seen by at least 1 provider at the Nemours Gender Wellness Program from March 2015 to December 2020. The extracted data included demographic and psychosocial characteristics at baseline and 1-year follow-up visits. Pubertal status was determined by Tanner staging by a pediatric endocrinologist or gynecologist. Descriptive statistics were used to compare these variables between prepubertal and pubertal subgroups. RESULTS: Our sample included 177 individuals at baseline and 96 subjects at the 1-year follow-up visit. Most patients were White (83.0%), non-Hispanic (92.0%), transgender male (72.9%), and pubertal (90.4%). Compared with prepubertal patients, at the baseline visit, pubertal patients had significantly higher rates of current (68.1% vs 17.6%, P < .001) and lifetime (80.0% vs 23.5%, P < .001) depressive symptoms, current anxiety symptoms (70.0% vs 41.2%, P = .01), lifetime suicide attempts (12.5% vs 0%, P < .001), and a formal diagnosis of an eating disorder (5.0% vs 0%, P < .001). Symptoms did not change significantly over time from baseline to the 1-year follow-up visit. CONCLUSION: We found elevated rates of psychological symptoms and diagnoses in gender-diverse youth, with higher rates in pubertal compared with prepubertal patients. By elucidating how the psychosocial characteristics of gender-diverse children and adolescents differ based on pubertal status, these data can be used to improve current outreach and treatment strategies for transgender pediatric patients.


Assuntos
Transtornos da Alimentação e da Ingestão de Alimentos , Pessoas Transgênero , Adolescente , Humanos , Masculino , Criança , Pessoas Transgênero/psicologia , Estudos Retrospectivos , Identidade de Gênero , Ansiedade/epidemiologia
4.
J Pediatr Psychol ; 49(2): 98-106, 2024 Feb 17.
Artigo em Inglês | MEDLINE | ID: mdl-37930074

RESUMO

OBJECTIVE: Prospectively examine racial and ethnic disparities in exposure to COVID-19-related stressors and their impact on families. METHODS: A racially, ethnically, and socioeconomically diverse cohort of caregivers of youth (n = 1,581) representative of the population served by a pediatric healthcare system completed the COVID-19 Exposure and Family Impact Scales in Oct/Nov 2020 and March/April 2021. Linear mixed-effects models were used to examine exposure to COVID-19-related events (Exposure), impact of the pandemic on family functioning and well-being (Impact), and child and parent distress (Distress) across time and as a function of race and ethnicity, adjusting for other sociodemographic variables. RESULTS: Exposure and Distress increased over time for all participants. After adjusting for sociodemographic factors, caregivers of Black and Hispanic youth reported greater Exposure than caregivers of White youth and caregivers of Black youth had a greater increase in Exposure over time than caregivers of White youth. Caregivers of White youth reported greater Impact than caregivers of Black and Other race youth. CONCLUSIONS: Exposure to and impact of the COVID-19 pandemic on family psychosocial functioning varied by race and ethnicity. Although exposure to COVID-19-related events was greater among Hispanic and non-Hispanic Black families, those of marginalized races reported less family impact than non-Hispanic White families, suggesting resiliency to the pandemic. Research should examine such responses to public health crises in communities of color, with a focus on understanding protective factors. These findings suggest the importance of culturally tailored interventions and policies that support universal psychosocial screenings during times of public health crises.


Assuntos
COVID-19 , Família , Adolescente , Criança , Humanos , COVID-19/epidemiologia , COVID-19/psicologia , Etnicidade/psicologia , Hispânico ou Latino/psicologia , Pandemias , Estudos Prospectivos , Negro ou Afro-Americano , Família/psicologia , Grupos Raciais , Cuidadores/psicologia , Brancos
5.
Pediatrics ; 152(6)2023 Dec 01.
Artigo em Inglês | MEDLINE | ID: mdl-37909059

RESUMO

BACKGROUND AND OBJECTIVES: Youth with either autism spectrum disorder (ASD) or gender dysphoria (GD) alone have also been shown to be at greater risk for mental health (MH) concerns; however, very little research has considered how cooccurring ASD and GD may exacerbate MH concerns. The purpose of this study was to examine associations between ASD, GD, and MH diagnoses (anxiety, depression, eating disorder, suicidality, and self-harm) among US adolescent populations. METHODS: This is a secondary analysis of a large administrative dataset formed by 8 pediatric health system members of the PEDSnet learning health system network. Analyses included descriptive statistics and adjusted mixed logistic regression models testing for associations between combinations of ASD and GD diagnoses and MH diagnoses as recorded in the patient's electronic medical record. RESULTS: Based on data from 919 898 patients aged 9 to 18 years, adjusted mixed logistic regression indicated significantly greater odds of each MH diagnosis among those with ASD alone, GD alone, and cooccurring ASD/GD diagnoses compared with those with neither diagnosis. Youth with cooccurring ASD/GD were at significantly greater risk of also having anxiety (average predicted probability, 0.75; 95% confidence interval, 0.68-0.81) or depression diagnoses (average predicted probability, 0.33; 95% confidence interval, 0.24-0.43) compared with youth with ASD alone, GD alone, or neither diagnosis. CONCLUSIONS: Youth with cooccurring ASD/GD are more likely to also be diagnosed with MH concerns, particularly anxiety and depression. This study highlights the need to implement developmentally appropriate, gender-affirming MH services and interventions for youth with cooccurring ASD/GD.


Assuntos
Transtorno do Espectro Autista , Disforia de Gênero , Humanos , Criança , Adolescente , Saúde Mental , Transtorno do Espectro Autista/complicações , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/epidemiologia , Disforia de Gênero/complicações , Disforia de Gênero/epidemiologia , Disforia de Gênero/psicologia , Transtornos de Ansiedade/complicações , Ansiedade
6.
Fam Syst Health ; 2023 Nov 27.
Artigo em Inglês | MEDLINE | ID: mdl-38010765

RESUMO

OBJECTIVE: The Pediatric Psychosocial Preventative Health Model (PPPHM) is a three-tier model of family psychosocial risk used to guide intervention approaches in pediatric healthcare settings. Screening all families to determine levels of risk supports equitable care. We review evidence from papers using the Psychosocial Assessment Tool (PAT), a brief caregiver-report measure of family psychosocial risk with scores that map to the PPPHM, to characterize the distribution of risk. We predict that across study samples the distribution of risk on the PPPHM will be approximately 60% universal (low), 30% targeted (moderate), and 10% clinical (high). METHOD: We conducted a scoping review searching PubMed, MEDLINE, Emcare, and PsycInfo for articles that reported PPPHM data using the PAT. RESULTS: Forty-seven samples from 43 papers were included, reporting on patients with 17 conditions. PPPHM scores were highly consistent with median percentages of 55% universal, 34% targeted, and 11% clinical. There is evidence of higher levels of risk for samples using the Spanish version of the PAT, from weight management programs and with families who have children with autism spectrum disorder. CONCLUSIONS: The data demonstrate consistent patterns of psychosocial risk distributions on the PPPHM and support implementation of universal family psychosocial risk screening, followed by delivery of personalized care based on level of risk. Screening all families promotes health equity in pediatric health care settings by normalizing the importance of understanding psychosocial risk and resiliencies and assuring family input in the delivery of integrated psychosocial care. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

7.
J Adolesc Young Adult Oncol ; 12(6): 929-934, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37815633

RESUMO

Adolescent/young adult cancer survivors (AYACS) struggle with poor psychosocial health related to social disruptions due to cancer diagnosis, impacting long-term goal achievement and overall health. In particular, social health promotion is overlooked in AYACS' care. AYA-UNITE, a sociobehavioral exercise intervention pilot for AYACS 15-21 years of age at cancer diagnosis, was designed to foster AYACS' social and physical health. AYA-UNITE was a 12-week group-based virtual exercise program incorporating strength training and aerobic activity. In this brief report, we account AYA-UNITE's conceptual design, lessons learned through AYA-UNITE intervention development, and opportunities for improvement in implementing effective AYACS psychosocial interventions (NCT03778658).


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Adolescente , Adulto Jovem , Sobreviventes de Câncer/psicologia , Neoplasias/terapia , Neoplasias/psicologia , Exercício Físico
8.
Diabetes Spectr ; 36(3): 219-227, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37583560

RESUMO

Background: Few studies have examined the implementation of the International Society for Pediatric and Adolescent Diabetes (ISPAD) Clinical Practice Consensus Guidelines for the Psychological Care of Children and Adolescents with Type 1 Diabetes. Objective: To collect benchmark data on psychosocial staffing and implementation of the ISPAD guidelines across U.S. pediatric diabetes clinics. Methods: Medical (n = 95; 77 endocrinologists and 18 advance practice providers) and psychosocial (n = 86; 43 social workers and 43 psychologists) providers from 98 of 115 contacted clinics completed an online survey (85% response rate). Providers reported the number of psychosocial staff and rated the adequacy of psychosocial staffing, quality of psychosocial care, and adherence to the ISPAD guidelines in their clinics. χ2 Tests and ANOVA were used to examine differences across clinic size and across medical and psychosocial providers. Results: Clinics averaged a total of ∼4 hours per week of psychosocial provider time per 100 patients with type 1 diabetes. Only 27% of providers agreed that psychosocial staffing was adequate, and 35% described their psychosocial care as comprehensive. Implementation of the ISPAD guidelines varied across clinics, with minimal differences across clinic size. Medical providers reported that evidence-based psychological assessment and interventions were delivered consistently by <55% of clinics. Psychosocial, compared with medical, providers were more likely to report frequent implementation of psychosocial assessment and intervention guidelines. Conclusion: Psychological care in U.S. pediatric type 1 diabetes clinics does not consistently meet the ISPAD guidelines, and many clinics lack adequate psychosocial staff. These benchmark data are a foundational step to improve psychosocial care for pediatric patients with type 1 diabetes.

9.
Pediatrics ; 152(2)2023 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-37395084

RESUMO

BACKGROUND AND OBJECTIVES: Autism spectrum disorder (ASD) and gender dysphoria (GD) frequently cooccur. However, existing research has primarily used smaller samples, limiting generalizability and the ability to assess further demographic variation. The purpose of this study was to (1) examine the prevalence of cooccurring ASD and GD diagnoses among US adolescents aged 9 to 18 and (2) identify demographic differences in the prevalence of cooccurring ASD and GD diagnoses. METHODS: This secondary analysis used data from the PEDSnet learning health system network of 8 pediatric hospital institutions. Analyses included descriptive statistics and adjusted mixed logistic regression testing for associations between ASD and GD diagnoses and interactions between ASD diagnosis and demographic characteristics in the association with GD diagnosis. RESULTS: Among 919 898 patients, GD diagnosis was more prevalent among youth with an ASD diagnosis compared with youth without an ASD diagnosis (1.1% vs 0.6%), and adjusted regression revealed significantly greater odds of GD diagnosis among youth with an ASD diagnosis (adjusted odds ratio = 3.00, 95% confidence interval: 2.72-3.31). Cooccurring ASD/GD diagnoses were more prevalent among youth whose electronic medical record-reported sex was female and those using private insurance, and less prevalent among youth of color, particularly Black and Asian youth. CONCLUSIONS: Results indicate that youth whose electronic medical record-reported sex was female and those using private insurance are more likely, and youth of color are less likely, to have cooccurring ASD/GD diagnoses. This represents an important step toward building services and supports that reduce disparities in access to care and improve outcomes for youth with cooccurring ASD/GD and their families.


Assuntos
Transtorno do Espectro Autista , Disforia de Gênero , Adolescente , Criança , Feminino , Humanos , Asiático , Transtorno do Espectro Autista/diagnóstico , Transtorno do Espectro Autista/epidemiologia , Transtorno do Espectro Autista/complicações , Registros Eletrônicos de Saúde , Disforia de Gênero/diagnóstico , Disforia de Gênero/epidemiologia , Disforia de Gênero/complicações , Prevalência , Negro ou Afro-Americano
10.
JMIR Res Protoc ; 12: e46339, 2023 Jun 02.
Artigo em Inglês | MEDLINE | ID: mdl-37267038

RESUMO

BACKGROUND: The psychosocial needs and risks of children with cancer and their families are well-documented including increased risk of parental distress, posttraumatic stress, and anxiety. There is a critical need to provide evidence-based psychosocial care to parents and caregivers of children with cancer. Digital health interventions are important to address many barriers to in-person intervention delivery but are not widely used in pediatric psychosocial cancer care. The COVID-19 pandemic has reinforced the need for flexible, acceptable, and accessible psychosocial digital health interventions. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is an innovative digital health intervention for parents and caregivers of children with cancer, delivered through a combination of self-guided web-based content and supplemented by 3 telehealth follow-up sessions with a trained telehealth guide. A Spanish language adaptation of eSCCIP, El Programa Electronico de Intervencion para Superar Cancer Competentemente (eSCCIP-SP), has been developed. The self-guided web-based cores of eSCCIP/eSCCIP-SP are a mix of didactic video content, multifamily video discussion groups featuring parents of children with cancer, and hands-on web-based activities. OBJECTIVE: The objective of this study is to test eSCCIP/eSCCIP-SP in a multisite randomized controlled trial, compared to an internet-based education control condition consisting of information specifically focused on concerns relevant to parents and caregivers of children with cancer. METHODS: Using a randomized controlled clinical trial design, 350 eligible parents and caregivers of children with cancer will be randomly assigned to the intervention (eSCCIP/eSCCIP-SP) or an education control condition. Data will be collected at 3 time points: preintervention (prior to randomization), immediately post intervention (after 6 weeks), and at a 3-month follow-up (from baseline). Participants randomized to either condition will receive study material (eSCCIP/eSCCIP-SP intervention or education control website) in English or Spanish, based on the primary language spoken in the home and participant preference. RESULTS: The primary study end point is a reduction in acute distress from baseline to postintervention, with secondary end points focused on reductions in symptoms of posttraumatic stress and anxiety, and improvements in coping self-efficacy and cognitive coping. An additional exploratory aim will be focused on implementation strategies and potential costs and cost-savings of eSCCIP/eSCCIP-SP, laying the groundwork for future trials focused on dissemination and implementation, stepped-care models, and intervention refinement. CONCLUSIONS: This trial will provide necessary data to evaluate the efficacy of eSCCIP/eSCCIP-SP. This intervention has the potential to be an easily scalable and highly impactful psychosocial treatment option for parents and caregivers of children with cancer. TRIAL REGISTRATION: ClinicalTrials.gov NCT05294302; https://clinicaltrials.gov/ct2/show/NCT05294302. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/46339.

11.
Pediatr Crit Care Med ; 24(11): 901-909, 2023 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-37318266

RESUMO

OBJECTIVES: To develop a model of family-based psychosocial care for congenital heart disease (CHD). DESIGN: Qualitative study using crowdsourced data collected from parents of young children with CHD who received care across 42 hospitals. SETTING: Yammer, a social networking platform used to facilitate online crowdsourcing and qualitative data collection. SUBJECTS: Geographically diverse sample of 100 parents (72 mothers and 28 fathers) of young children with CHD. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Parents joined a private group on Yammer and responded to 37 open-ended study questions over a 6-month period. Qualitative data were coded and analyzed using an iterative process. Three broad themes corresponding to pillars of family-based psychosocial care were identified: pillar 1) parent partnership in family-integrated medical care, pillar 2) supportive interactions focused on parent and family wellbeing, and pillar 3) integrated psychosocial care and peer support for parents and families. Each pillar was supported by subthemes corresponding to specific intervention strategies. Most parents described the need for intervention strategies across multiple pillars, with almost half reporting needs across all three pillars of psychosocial care. Parents' preferences for psychosocial support changed over time with changes to their child's medical status and across care settings (e.g., hospital, outpatient clinic). CONCLUSIONS: Results support a model of family-based psychosocial care that is multidimensional and flexible to meet the needs of families affected by CHD. All members of the healthcare team play an important role in providing psychosocial support. Future research incorporating components of implementation science is needed to promote uptake of these findings, with the goal of optimizing family-based psychosocial support in the hospital setting and beyond.


Assuntos
Cardiopatias Congênitas , Reabilitação Psiquiátrica , Criança , Feminino , Humanos , Pré-Escolar , Pais/psicologia , Mães , Sistemas de Apoio Psicossocial , Cardiopatias Congênitas/terapia , Cardiopatias Congênitas/psicologia
12.
Pediatr Cardiol ; 44(7): 1479-1486, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-37355506

RESUMO

Prenatal diagnosis of congenital heart disease (CHD) often leads to anxiety, depression, and traumatic stress in expectant mothers, with long-term implications for the child and family. However, psychosocial intervention is rarely incorporated into prenatal care. HEARTPrep is a virtually delivered psychosocial intervention aimed at reducing distress and social isolation and increasing parenting self-efficacy and hope for mothers expecting a baby with CHD to promote long-term child/family well-being. This study evaluated the feasibility and acceptability of HEARTPrep. Participants were mothers receiving cardiology care for a fetal CHD diagnosis. Partners could participate with the mother. HEARTPrep was delivered through a mobile app and telehealth. Feasibility was assessed through enrollment/retention rates. Acceptability was assessed through 20 Likert-scale and five open-ended questions. Of 39 recruited mothers, 35 (90%) enrolled. Half of partners (48%) also participated. Twenty-seven of 35 enrolled mothers (77%) completed HEARTPrep. On a scale from 0 (Not at All) to 4 (Very), mean item acceptability scores ranged from 3.5 to 3.9. Mothers reported HEARTPrep helped them feel less distressed (mean: 3.74), less alone (3.84), more prepared (3.89), and more hopeful (3.84). Opportunities to process emotions, develop coping skills, learn with their partner, navigate relationships, understand they are not alone, connect with peer support, access resources, and prepare for stressors were described as helpful. HEARTPrep is feasible and acceptable for mothers expecting a baby with CHD. Future research will evaluate its efficacy in preventing/reducing maternal mental health problems and improving postnatal clinical outcomes.


Assuntos
Cardiopatias Congênitas , Intervenção Psicossocial , Feminino , Lactente , Criança , Gravidez , Humanos , Estudos de Viabilidade , Mães , Ansiedade , Cardiopatias Congênitas/diagnóstico , Cardiopatias Congênitas/terapia
13.
J Pediatr Psychol ; 48(7): 636-644, 2023 07 20.
Artigo em Inglês | MEDLINE | ID: mdl-37228163

RESUMO

OBJECTIVE: Psychosocial screening is recommended to connect siblings of youth with cancer to psychosocial services, but the lack of validated sibling-specific screening tools is a barrier to routine screening. The current study aimed to validate and establish a clinical cutoff for the recently developed Psychosocial Assessment Tool (PAT) Sibling Module follow-up version to address this barrier. METHODS: Parents (N = 246) completed the PAT Sibling Module follow-up version for all siblings within their families ages 0-17 years (N = 458) at three time points between 6- and 24-month post-cancer diagnosis. For one target sibling within each family aged 8-17 years, parents also completed the Strengths and Difficulties Questionnaire, and the target sibling completed the Child PTSD Symptom Scale. Cross-sectional and longitudinal analyses examined internal consistency and convergent and predictive validity. Receiver operator characteristic analyses were used to establish a maximally sensitive and specific clinical cutoff. RESULTS: Internal consistency was acceptable for all age versions (Kuder-Richardson 20s ≥ 0.79), except for the ages 0-2 version, which had low internal consistency at 18 months post-diagnosis (Kuder-Richardson 20 = 0.57). Convergent (r values >0.7, p values <.001) and predictive (r values >0.6, p values <.001) validity were strong at each time point. An optimal clinical cutoff of 0.32 was identified (range: 0.00-1.00). CONCLUSIONS: The PAT Sibling Module follow-up version is a reliable and valid screener for sibling psychosocial risk following cancer diagnosis. Validation of a sibling-specific screener and establishment of a clinical cutoff are necessary first steps to addressing siblings' unmet psychosocial needs and improving trajectories of sibling functioning.


Assuntos
Neoplasias , Irmãos , Criança , Adolescente , Humanos , Irmãos/psicologia , Psicometria , Seguimentos , Estudos Transversais , Inquéritos e Questionários , Pais/psicologia , Neoplasias/diagnóstico , Neoplasias/psicologia
14.
Public Health Rep ; 138(4): 633-644, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37013845

RESUMO

OBJECTIVE: The COVID-19 pandemic has disrupted traditional health care, including pediatric health care. We described the impact of the pandemic on disparities in pediatric health care engagement. METHODS: Using a population-based cross-sectional time-series design, we compared monthly ambulatory care visit volume and completion rates (completed vs no-show and cancelled visits) among pediatric patients aged 0-21 years in 4 states in the mid-Atlantic United States during the first year of the COVID-19 pandemic (March 2020-February 2021) with the same period before the pandemic (March 2019-February 2020). We used unadjusted odds ratios, stratified by visit type (telehealth or in-person) and sociodemographic characteristics (child race and ethnicity, caregiver primary language, geocoded Child Opportunity Index, and rurality). RESULTS: We examined 1 556 548 scheduled ambulatory care visits for a diverse pediatric patient population. Visit volume and completion rates (mean, 70.1%) decreased during the first months of the pandemic but returned to prepandemic levels by June 2020. Disparities in in-person visit completion rates among non-Hispanic Black versus non-Hispanic White patients (64.9% vs 74.3%), patients from socioeconomically disadvantaged versus advantaged communities as measured by Child Opportunity Index (65.8% vs 76.4%), and patients in rural versus urban neighborhoods (66.0% vs 70.8%) were the same during the remainder of the first year of the pandemic as compared with the previous year. Concurrent with large increases in telehealth (0.5% prepandemic, 19.0% during the pandemic), telehealth completion rates increased. CONCLUSIONS: Disparities in pediatric visit completion rates that existed before the pandemic persisted during the pandemic. These findings underscore the need for culturally tailored practices to reduce disparities in pediatric health care engagement.


Assuntos
COVID-19 , Disparidades em Assistência à Saúde , Criança , Humanos , Assistência Ambulatorial , População Negra , COVID-19/epidemiologia , Estudos Transversais , Pandemias , Brancos , Recém-Nascido , Lactente , Pré-Escolar , Adolescente , Adulto Jovem , Mid-Atlantic Region
15.
Obstet Gynecol ; 141(4): 748-755, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36897186

RESUMO

OBJECTIVE: To describe and compare the outcomes of various menstrual-management methods, including method choice, continuation, bleeding patterns, amenorrhea rates, effect on moods and dysphoria, and side effects, in transgender and gender-diverse adolescents. METHODS: This was a retrospective chart review of all patients seen in a multidisciplinary pediatric gender program from March 2015 to December 2020 who were assigned female at birth, had achieved menarche, and used a menstrual-management method during the study period. Data were abstracted on patient demographics and menstrual-management method continuation, bleeding patterns, side effects, and satisfaction at 3 months (T1) and 1 year (T2). Outcomes were compared between method subgroups. RESULTS: Among the 101 included patients, 90% chose either oral norethindrone acetate or a 52-mg levonorgestrel (LNG) intrauterine device (IUD). There were no differences in continuation rates for these methods at either follow-up time. Almost all patients had improved bleeding at T2 (96% for norethindrone acetate and 100% for IUD users), with no difference between subgroups. Amenorrhea rates were 84% for norethindrone acetate and 67% for IUD at T1 and 97% and 89%, respectively, at T2, with no differences at either point. The majority of patients had improved pain, menstrually related moods, and menstrually related dysphoria at both follow-up points. There were no differences in side effects between subgroups. There were no differences in method satisfaction between the groups at T2. CONCLUSION: Most patients chose norethindrone acetate or an LNG IUD for menstrual management. Continuation, amenorrhea, and improved bleeding, pain, and menstrually related moods and dysphoria were high for all patients, indicating that menstrual management is a viable intervention for gender-diverse patients who experience increased dysphoria related to menses.


Assuntos
Anticoncepcionais Femininos , Dispositivos Intrauterinos Medicados , Pessoas Transgênero , Recém-Nascido , Humanos , Feminino , Adolescente , Criança , Amenorreia/induzido quimicamente , Amenorreia/tratamento farmacológico , Estudos Retrospectivos , Acetato de Noretindrona , Dispositivos Intrauterinos Medicados/efeitos adversos , Levanogestrel/efeitos adversos , Anticoncepcionais Femininos/efeitos adversos , Hemorragia/etiologia , Dor/etiologia
16.
J Adolesc Health ; 72(2): 207-213, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36443161

RESUMO

PURPOSE: Transgender and gender diverse patients who are assigned female at birth may request menstrual management to alleviate an increased dysphoria due to menses. The objective of this study is to describe the initiation and use over time of menstrual management methods (MMMs) in transgender and gender diverse adolescents. METHODS: A retrospective chart review was conducted of patients in a multidisciplinary pediatric gender program from March 2015 to December 2020 who were assigned female at birth, identified as transgender or gender diverse, and had achieved menarche. A descriptive statistical analysis was performed. RESULTS: Of 133 patients, 119 (90%) identified as transgender male, 11 (8%) as gender nonbinary, and 3 (2%) as another gender identity. Mean age was 15 (standard deviation 1.6) years. Only 12 (9%) patients had ever been sexually active. During the study period, 48 (36%) used gender-affirming testosterone. At the initial visit, 114 (86%) patients were not using an MMM. Of 80 patients who initiated a new MMM, 3 (4%) chose continuous oral contraceptive pills, 65 (83%) used norethindrone acetate (NETA), and 9 (11%) planned levonorgestrel intrauterine device (IUD) insertion. At 1 year, 56 patients were using NETA and 20 had an IUD in place. DISCUSSION: This study provides data on MMM choice in transgender and gender diverse adolescents using these methods almost exclusively for menstrual management and not contraception. Although few patients were using an MMM at baseline, most opted to start a method when given the opportunity. The most common methods were NETA or an levonorgestrel IUD.


Assuntos
Levanogestrel , Pessoas Transgênero , Recém-Nascido , Humanos , Feminino , Masculino , Adolescente , Criança , Identidade de Gênero , Estudos Retrospectivos , Menstruação
17.
J Pediatr Psychol ; 48(1): 29-38, 2023 01 12.
Artigo em Inglês | MEDLINE | ID: mdl-35849020

RESUMO

OBJECTIVE: To examine as secondary analyses the effect the FAMily-Oriented Support (FAMOS) family therapy program on reducing parent-reported medical traumatic stress in the sub-sample of pediatric cancer survivors, age 2-5 years. METHODS: The FAMOS study was a national multicenter randomized controlled trial with all four pediatric oncology departments in Denmark (Clinicaltrials.gov [NCT02200731]). Families were randomized in parallel design (1:1) to intervention or usual care. The FAMOS program includes seven home-based psychotherapeutic sessions and is based on family systems therapy to address the individuals in the family system using cognitive behavioral, problem-solving and goal-setting techniques. Questionnaires were completed by parents at baseline, 6, and 12 months. In linear mixed-effects models, the effect of FAMOS on reducing children's trauma-related behavior after 6 and 12 months was examined in 62 children (31 in the intervention and 29 in the control group, respectively). It was also examined if a trauma-related behavior effect was mediated through reduced symptoms of depression in mothers and fathers, respectively. RESULTS: On average, children in the intervention group experienced significantly larger decreases in trauma-related behaviors at 6 and 12 months than the control group (predicted mean difference -3.89, p = .02 and -6.24, p = .003, respectively). The effect on trauma-related behavior was partly mediated through reduced symptoms of depression in mothers, but not fathers. CONCLUSIONS: Adding to previously reported positive effects of the FAMOS intervention on parents' symptoms of post-traumatic stress and depression, significant improvements were found in young children's trauma related-behavior. Further research is needed to develop therapy for children with cancer.


Assuntos
Sobreviventes de Câncer , Neoplasias , Feminino , Criança , Humanos , Pré-Escolar , Pais/psicologia , Mães , Sobreviventes/psicologia , Neoplasias/terapia , Neoplasias/psicologia
18.
J Pediatr Psychol ; 48(3): 216-227, 2023 03 20.
Artigo em Inglês | MEDLINE | ID: mdl-36303445

RESUMO

BACKGROUND: Providing high-quality psychosocial care to parents and other primary caregivers of children with cancer (henceforth referred to as caregivers) is important, given the numerous challenges associated with a pediatric cancer diagnosis and the increased risk for negative psychosocial sequelae among caregivers. The Electronic Surviving Cancer Competently Intervention Program (eSCCIP) is a psychosocial eHealth intervention for caregivers, developed using an iterative, user-centered process. METHOD: eSCCIP was tested in a single-arm pilot trial at Nemours Children's Hospital, Delaware (NCT05333601). The primary outcomes were intervention acceptability and feasibility, assessed via enrollment and retention targets, and item-level acceptability ratings. Enrollment and retention targets of 45% were set based on previous work, and an item-level acceptability threshold of 80% was set. A secondary exploratory analysis was conducted examining acute distress, anxiety, symptoms of post-traumatic stress, and family functioning. RESULTS: 44 caregivers enrolled in the study and 31 completed. The intervention was rated favorably by completers, with over 80% of the sample selecting "mostly true" or "very true" for all items of the eSCCIP Evaluation Questionnaire, which was used to assess acceptability and feasibility. Enrollment and retention rates were 54% and 70%, respectively. Exploratory psychosocial outcomes showed statistically significant decreases from pre-intervention to post-intervention for overall symptoms of post-traumatic stress disorder (PTSD), cluster D symptoms of PTSD (negative mood and cognitions), and anxiety. Small-moderate effect sizes were observed for all psychosocial outcomes of interest. CONCLUSIONS: eSCCIP is an acceptable and feasible intervention for caregivers. Results are promising regarding reductions in symptoms of post-traumatic stress and anxiety.


Assuntos
Neoplasias , Transtornos de Estresse Pós-Traumáticos , Criança , Humanos , Ansiedade/terapia , Cuidadores/psicologia , Estudos de Viabilidade , Neoplasias/psicologia , Projetos Piloto , Transtornos de Estresse Pós-Traumáticos/terapia , Transtornos de Estresse Pós-Traumáticos/psicologia
19.
J Child Health Care ; 27(3): 360-373, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-34879743

RESUMO

This study aimed to identify barriers and facilitators to discussing parent mental health within child health care for parents of children with congenital heart disease (CHD). Seventy-nine parents of young children with CHD who received care across 40 hospitals in the United States responded to questions about barriers and facilitators to discussing their mental health with their child's health care providers. Responses were analyzed using qualitative research methods. Parents described multiple barriers: (1) belief that parent mental health support was outside the care team's scope of practice, (2) perceived expectation to "stay strong," (3) fear of negative judgment or repercussion, (4) individual preferences for communication/support, (5) desire to maintain care resources on their child, (6) perceived need to compartmentalize emotions, and (7) negative reactions to past emotional disclosure. Parents also described several facilitators: (1) confidence in the care team's ability to provide support, (2) intentional efforts by the care team to provide support, (3) naturally extroverted tendencies, and (4) developing personal connections with health care providers. It is important that health care providers normalize the impact of child illness on the family and create an environment in which parents feel comfortable discussing mental health challenges.


Assuntos
Cardiopatias Congênitas , Saúde Mental , Humanos , Criança , Pré-Escolar , Saúde da Criança , Pais/psicologia , Emoções , Cardiopatias Congênitas/terapia , Cardiopatias Congênitas/psicologia
20.
J Autism Dev Disord ; 53(11): 4308-4317, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-36001195

RESUMO

Recognizing the multifaceted and chronic demands on families of children with Autism Spectrum Disorder (ASD) and challenges in providing care matched to need, we adapted the Psychosocial Assessment Tool (PAT), a brief caregiver-report screener of family psychosocial risk, for this population. Study methods included literature review, focus groups with providers, and feedback from caregivers. The PAT-ASD is consistent with the original PAT, with new items reflecting core behavioral manifestations of ASD and parent and family challenges associated with chronicity. The PAT-ASD was implemented in a four-month pilot and was completed online by 59% of families. Although further testing of its validity is necessary, the PAT-ASD is a promising means of assessing family psychosocial risk for families of children with ASD.


Assuntos
Transtorno do Espectro Autista , Criança , Humanos , Transtorno do Espectro Autista/diagnóstico , Cuidadores/psicologia , Pais/psicologia , Estresse Psicológico/psicologia
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