Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 37
Filtrar
1.
Digit Health ; 10: 20552076241261458, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38882255

RESUMEN

Objectives: Fetal alcohol spectrum disorders (FASD) affect the health and development of people across the lifespan. Adults with FASD experience significant barriers to care. Accessible and scalable solutions are needed. In partnership with members of the International Adult Leadership Collaborative of FASD Changemakers, an international group of adults with FASD, we developed a mobile health (mHealth) application based on self-determination theory (SDT), called "My Health Coach," to promote self-management and health advocacy. Methods: This project follows an established user-centered design approach to app development and evaluation, allowing for feedback loops promoting iterative change. Research staff and ALC members co-led online focus groups (n = 26) and an online follow-up survey (n = 26) with adults with FASD to elicit feedback on completed design prototypes. Focus group transcriptions and surveys underwent systemic thematic and theoretical framework analysis. Results: Analyses show overall positive impressions of the My Health Coach app. Participants were enthusiastic about the proposed features and tools the app will provide. Discussions and free responses revealed SDT constructs (autonomy, competence, relatedness) are a strong fit with participants' perceived outcomes shared in their evaluation of the prototype. Interesting recommendations were made for additional features that would further promote SDT constructs. Conclusions: This project demonstrates advantages of community-engaged partnerships in FASD research. Adults with FASD have a strong interest in scalable mHealth tools and described the acceptability of our initial design. App features and tools promoted SDT constructs.

2.
Artículo en Inglés | MEDLINE | ID: mdl-38767735

RESUMEN

Parent attributions for children's behavior affect parenting practices and emotional reactions. The current study aimed to create a new measure of parental attributions, called the Reasons for Children's Behavior (RCB), to capture how parents take developmental ability into account when making attributions for specific behaviors. A 224-item survey was completed by 836 participants, including original items and established parent attribution and parenting construct scales. Exploratory factor analyses and item-response theory analyses were utilized to develop the RCB, which includes 30 items comprising seven subscales. The RCB demonstrated an extremely stable factor structure, high levels of internal consistency across 25 demographic groups, reasonable test-retest correlations across 2 weeks, appropriate convergent and discriminant validity, and unique predictive validity (i.e., incremental validity). The RCB offers researchers and clinicians a novel tool to better understand how parent attributions for child behavior impact parenting and larger family dynamics.

3.
Front Public Health ; 12: 1355802, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38544727

RESUMEN

Fetal alcohol spectrum disorders (FASD) are among the most common neurodevelopmental disorders and substantially impact public health. FASD can affect people of all races and ethnicities; however, there are important racial and ethnic disparities in alcohol-exposed pregnancy prevention, assessment and diagnosis of FASD, and interventions to support individuals with FASD and their families. In this article we use the Dis/Ability Studies and Critical Race Theory (Dis/Crit) framework to structure the exploration of disparities and possible solutions within these three areas (prevention, diagnosis, intervention). Dis/Crit provides a guide to understanding the intersection of dis/ability and race, while framing both as social constructs. Following the Dis/Crit framework, the systemic, historical, and contemporary racism and ableism present in psychological care is further discussed. We aim to elucidate these racial and ethnic disparities within the fields of psychology and neuropsychology through the Dis/Crit framework and provide potential points of action to reduce these disparities.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal , Femenino , Embarazo , Humanos , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Trastornos del Espectro Alcohólico Fetal/terapia , Etnicidad , Salud Pública
4.
Alcohol Clin Exp Res (Hoboken) ; 48(1): 110-121, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38054571

RESUMEN

BACKGROUND: Children with fetal alcohol spectrum disorder (FASD) often experience delayed, missed, or incorrect diagnosis due to low FASD awareness and diagnostic capacity. Current strategies to expand awareness and diagnostic capacity are insufficient or impractical. METHODS: This project examined the feasibility of Extension for Community Healthcare Outcomes (ECHO) tele-mentoring to train community clinicians about FASD. Participants attended ten 1-h weekly ECHO sessions that included presentations, vignettes, and discussions. Measurement utilized Bowen's feasibility domains. RESULTS: Robust webpage traffic yielded 19 participants (demand). Fidelity scores, hub team field notes, and participant ratings indicated feasibility based on acceptability, implementation, practicality, and adaptation. Clinicians' knowledge and confidence improved and case-based diagnostic accuracy was high (limited efficacy). CONCLUSIONS: ECHO FASD is a feasible training method that shows promise in increasing diagnostic capacity across many geographic regions.

5.
Child Abuse Negl ; 147: 106594, 2024 01.
Artículo en Inglés | MEDLINE | ID: mdl-38086214

RESUMEN

BACKGROUND: Adolescent girls whose families experience poverty are more vulnerable to psychopathology, and it is vital to investigate biopsychosocial factors contributing to mental health functioning. OBJECTIVE: To test associations between prenatal exposure to substances, intergenerational maltreatment, and adolescent mental health symptoms. PARTICIPANTS AND SETTING: Baseline data were used from a randomized controlled trial testing the efficacy of Interpersonal Psychotherapy (IPT-A) for depression among girls with and without maltreatment exposure. Adolescents (Aged 13-16; 63.5 % Black/African-American, 21.0 % White, 15.57 % other racial identity; 12.57 % Latina/x) were recruited from families experiencing financial adversity (income <200 % poverty threshold). METHODS: Adolescent maltreatment status was determined by using multiple sources (child protective service records, parental report, and adolescent report). Mothers reported on prenatal substance exposure, experiences of maltreatment in their own childhood, and rated adolescent internalizing and externalizing symptoms. Latent Class Analysis was used to determine common patterns of prenatal substance exposure (tobacco, alcohol, marijuana, and cocaine). Structural Equation Modeling was used to evaluate associations between maltreatment in two generations, prenatal exposure to substances, and adolescent mental health symptoms. RESULTS: Two profiles of prenatal substance exposure emerged: one typified by low substance exposure (92.8 %), and one with moderate to high substance exposure (7.2 %). Both prenatal substance exposure and maternal history of maltreatment were associated with adolescent maltreatment, which in turn, was associated with greater adolescent externalizing symptoms. Parental history of maltreatment was directly associated with greater adolescent internalizing symptoms. CONCLUSION: Prenatal exposure to substances and intergenerational maltreatment each confer risk for mental health symptoms in adolescent girls.


Asunto(s)
Trastornos Mentales , Efectos Tardíos de la Exposición Prenatal , Adolescente , Femenino , Humanos , Embarazo , Trastornos Mentales/epidemiología , Trastornos Mentales/psicología , Pobreza , Efectos Tardíos de la Exposición Prenatal/epidemiología , Psicopatología , Ensayos Clínicos Controlados Aleatorios como Asunto
6.
Hosp Pediatr ; 13(12): e371-e376, 2023 Dec 01.
Artículo en Inglés | MEDLINE | ID: mdl-37969006

RESUMEN

OBJECTIVES: This study aimed to identify coping factors for caregivers of children with medical complexity (CMC) to manage the stressors and experience associated with their child's hospitalization. METHODS: We conducted semistructured interviews with CMC caregivers over a video-conferencing platform to examine factors that they perceive impact their coping while their children are hospitalized. Interviews were audio-recorded, transcribed, and imported into a qualitative coding software (MAXQDA). Using a modified grounded theory approach, we assigned process and in vivo codes to the transcripts and conducted interpretive analysis to identify themes. Once we reached thematic saturation, we finalized themes by discussing them to achieve group consensus and processed themes through triangulation with our institution's pediatric family advisory council. RESULTS: We interviewed 14 caregivers (11 mothers and 3 fathers) and identified 3 major themes. The factors that contributed to CMC caregiver coping with their child's hospitalizations included caregivers: feeling that they are prioritizing their child's needs over their own, feeling trust in their child's interdisciplinary healthcare team, and feeling their self-care practices are well adjusted to the hospital setting. CONCLUSIONS: Our study found 3 coping factors for caregivers of CMC during their child's hospitalization. Development and testing of interventions that enhance these coping practices may better support CMC caregivers during their child's hospitalizations. Potential interventions could include developing structured processes to establish caregiver involvement in their child's hospital care and helping caregivers modify their existing coping mechanisms to the hospital setting.


Asunto(s)
Cuidadores , Hospitalización , Femenino , Niño , Humanos , Madres , Adaptación Psicológica , Hospitales
7.
Alcohol ; 113: 11-20, 2023 12.
Artículo en Inglés | MEDLINE | ID: mdl-37572729

RESUMEN

The 2022 Fetal Alcohol Spectrum Disorders Study Group (FASDSG) meeting was held in coordination with the 45th annual Research Society on Alcoholism conference on June 25th, 2022. The theme of the meeting was "Enhancing the Relevance of Research for the Community." The program began with a moderated panel discussion on the value of community-engaged research, which included two self-advocates and a clinical and pre-clinical researcher. Invited plenary speakers included Jill Locke, Ph.D., who provided an engaging introduction to implementation science, and Jared Young, Ph.D., who discussed cross-species domain task specificity. The meeting also included updates from three government agencies, short presentations by junior and senior investigators showcasing late-breaking FASD research, trainee award winners, and a presentation on the Toward Health Outcomes intervention roadmap by Jacqueline Pei, Ph.D.


Asunto(s)
Alcoholismo , Distinciones y Premios , Trastornos del Espectro Alcohólico Fetal , Femenino , Embarazo , Humanos , Trastornos del Espectro Alcohólico Fetal/diagnóstico , Alcoholismo/diagnóstico
8.
Alcohol Clin Exp Res (Hoboken) ; 47(9): 1722-1735, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37423769

RESUMEN

BACKGROUND: Individuals with fetal alcohol spectrum disorders (FASD) experience heightened rates of childhood trauma and adversity. Research has examined the negative impact adverse childhood experiences have on developmental outcomes. This study aims to take the field a step further by examining the details of traumatic events, including duration, perpetrator, whether the event significantly impacted the child, and trauma subtype. Subtype is examined using threat/deprivation dimensions and their relation to child behavior and the caregiver-child relationship. METHODS: A sample of 84 children aged 4-12 with FASD, all in out-of-home placements, and their families took part in an emotion coaching intervention study. At baseline, caregivers completed questionnaires assessing child trauma, child emotion regulation and behavior, caregiver emotion socialization, and caregiver-child relationships. We used analysis of covariance to examine the differing impacts of threat, deprivation, and a combination of the two on behavioral outcomes, while controlling for age. We also used Pearson's r correlations, controlling for age, to examine whether the duration of threat or deprivation exposure was related to child outcomes. RESULTS: Descriptive statistics showed that 87.5% of individuals experienced three or more subtypes of trauma. The average duration of all subtypes was 1.62 years, with a mean onset of 3.94 years. Biological parents were the most common perpetrator. There were significantly worse behavioral and caregiver-child relationship outcomes for children experiencing a combination of threat and deprivation trauma. A r correlations, controlling for age, demonstrated longer duration of deprivation was associated with greater cognitive difficulties. CONCLUSIONS: We found unique patterns of behavior in children with FASD when analyzing the impact of traumatic experiences through a threat/deprivation framework. The combination of both threat and deprivation experiences leads to worse outcomes overall. Additionally, vital details surrounding the traumatic experiences point to crucial areas for intervention, including caregiver-child relationships.

9.
Alcohol Clin Exp Res (Hoboken) ; 47(3): 577-588, 2023 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-36811189

RESUMEN

BACKGROUND: Children with fetal alcohol spectrum disorders (FASD) have high rates of adverse childhood experiences (ACEs). ACEs are associated with a wide range of health outcomes including difficulty with behavior regulation, an important intervention target. However, the effect of ACEs on different areas of behavior has not been well characterized in children with disabilities. This study describes ACEs in children with FASD and how they impact behavior problems. METHODS: A convenience sample of 87 caregivers of children (aged 3 to 12) with FASD participating in an intervention study reported on their children's ACEs using the ACEs Questionnaire and behavior problems on the Eyberg Child Behavior Inventory (ECBI). A theorized three-factor structure of the ECBI (Oppositional Behavior, Attention Problems, and Conduct Problems) was investigated. Data were analyzed using Pearson correlations and linear regression. RESULTS: On average, caregivers endorsed 3.10 (SD = 2.99) ACEs experienced by their children. The two most frequently endorsed ACE risk factors were having lived with a household member with a mental health disorder, followed by having lived with a household member with a substance use disorder. Higher total ACEs score significantly predicted a greater overall frequency of child behavior (intensity scale), but not whether the caregiver perceived the behavior to be a problem (problem scale) on the ECBI. No other variable significantly predicted the frequency of children's disruptive behavior. Exploratory regressions indicated that a higher ACEs score significantly predicted greater Conduct Problems. Total ACEs score was not associated with Attention Problems or Oppositional Behavior. DISCUSSION: Children with FASD are at risk for ACEs, and those with higher ACEs had a greater frequency of problem behavior on the ECBI, especially conduct problems. Findings emphasize the need for trauma-informed clinical care for children with FASD and increased accessibility of care. Future research should examine potential mechanisms that underlie the relationship between ACEs and behavior problems to optimally inform interventions.


Asunto(s)
Experiencias Adversas de la Infancia , Trastornos del Espectro Alcohólico Fetal , Problema de Conducta , Trastornos Relacionados con Sustancias , Femenino , Embarazo , Humanos , Niño , Trastornos del Espectro Alcohólico Fetal/epidemiología , Factores de Riesgo
10.
Am J Intellect Dev Disabil ; 127(5): 355-368, 2022 09 01.
Artículo en Inglés | MEDLINE | ID: mdl-36018765

RESUMEN

People with disabilities have not been adequately represented in strengths-based research. This study is the first to examine strengths and positive influences of young children with fetal alcohol spectrum disorder (FASD). Thirty adoptive and relative caregivers of children with FASD reported their children's strengths and positive influences and completed measures on family functioning. Using a conversion mixed design, we described themes in strengths and influences, degree of caregiver positivity and relationships with child and family functioning. Caregivers reported wide-ranging strengths and positive influences. Frequency of adaptive strengths correlated with measures of family functioning, but thematic strengths and positive influences did not. Strengths and positive influences are distinct from measures of functioning and are not well captured in deficit-focused research.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal , Cuidadores , Niño , Preescolar , Familia , Femenino , Humanos , Embarazo
11.
Alcohol ; 102: 23-33, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35597423

RESUMEN

The 2021 meeting of the Fetal Alcohol Spectrum Disorders Study Group (FASDSG) was titled "Role of Parental Experiences in Offspring Outcomes". The theme was reflected in the presentations of two keynote speakers: Edward Levin, Ph.D., who spoke about the role of paternal exposures in offspring development, and Catherine Monk, Ph.D., who spoke about the effects of maternal exposures and maternal mental health on offspring development. The conference included updates from three government agencies, short presentations by junior and senior investigators showcasing late-breaking FASD research, a report on international efforts to streamline FASD classifications for research, a presentation of observations from adults with FASD, a short film of people with FASDs describing their experiences, and a poster session. The conference was capped by awarding the 2021 Henry Rosett award for career-long contributions to the field to Cynthia J.M. Kane, Ph.D.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal , Distinciones y Premios , Femenino , Humanos , Masculino , Embarazo
12.
Int J Adv Couns ; 44(1): 164-196, 2022 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-37727220

RESUMEN

The unique needs of unaccompanied children (UC) and unaccompanied refugee minors (URM) often make it challenging for them to engage in traditional mental health services. This paper describes the development and implementation of a mental health program for UC and URM using a collaborative approach with key stakeholders. In the Exploration phase, we conducted an assessment of youths' mental health needs, barriers to, and recommendations for care through discussions with community partners. Next, we describe the Preparation phase in which we designed the program around three major domains: 1) training and consultation, 2) cross-sector collaboration, and 3) direct services. Discussion of the Implementation phase includes a description of youth served and program materials. Finally, the Sustainment phase focuses on recommendations for best practice informed by successes and challenges of program implementation. Findings have implications for future mental health programming for UC/URM.

13.
JMIR Form Res ; 5(12): e29687, 2021 Dec 02.
Artículo en Inglés | MEDLINE | ID: mdl-34860661

RESUMEN

BACKGROUND: Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard. OBJECTIVE: This study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements. METHODS: Two rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives. RESULTS: Across beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers' stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience. CONCLUSIONS: The results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions.

14.
Alcohol Clin Exp Res ; 45(12): 2430-2447, 2021 12.
Artículo en Inglés | MEDLINE | ID: mdl-34694016

RESUMEN

INTRODUCTION: Fetal alcohol spectrum disorders (FASD) are highly prevalent developmental disabilities associated with prenatal alcohol exposure. In addition to varied strengths and unique talents, people with FASD experience significant challenges, including in adaptive functioning. Adaptive functioning refers to skills related to everyday life such as communication, practical skills, and social skills. For the current review, we aimed to understand how adaptive functioning in FASD compares to that of alcohol nonexposed individuals and those with attention deficit-hyperactivity disorder (ADHD). Additionally, we investigated how this relationship may change based on IQ, executive functioning, and age. METHOD: The current review was registered in the International Prospective Register of Systematic Reviews. Studies were eligible for inclusion if they measured adaptive functioning and included an FASD group and at least one eligible comparison group. Articles available in May 2021 in PubMed, PsycInfo, Scopus, and ProQuest Dissertations were searched. Publication bias was assessed using Egger's regression and three-level random effects models were computed for all domains of adaptive functioning. Possible moderation by IQ, executive functioning, and age were investigated when heterogeneity analyses were significant. A post hoc moderation analysis of recruitment method was also completed. RESULTS: Thirty studies were included. Individuals with FASD had significantly lower adaptive functioning than other groups, with effect sizes ranging from 1.04 to 1.35 compared to alcohol nonexposed groups and from 0.30 to 0.43 compared to ADHD groups. No significant moderating effects were found for IQ or age; executive functioning significantly moderated communication skills in FASD compared to the alcohol nonexposed group. Recruitment method significantly affected this relationship, with larger effect sizes on average found for clinically identified samples than at-risk or population samples. CONCLUSIONS: Individuals with FASD have impairments in adaptive functioning relative to alcohol nonexposed and ADHD groups, regardless of IQ, executive functioning, or age. Limitations of the review include small sample sizes in some comparisons and a limited age range.


Asunto(s)
Función Ejecutiva , Trastornos del Espectro Alcohólico Fetal/epidemiología , Pruebas de Inteligencia , Efectos Tardíos de la Exposición Prenatal/epidemiología , Adaptación Fisiológica , Adaptación Psicológica , Femenino , Humanos , Pruebas Neuropsicológicas , Embarazo
15.
Alcohol Clin Exp Res ; 45(6): 1265-1275, 2021 06.
Artículo en Inglés | MEDLINE | ID: mdl-33999430

RESUMEN

BACKGROUND: Few studies have investigated the partner's influence on risk factors such as alcohol consumption and depression during pregnancy. Partner substance use and lower relationship satisfaction predict higher maternal alcohol use and depressive symptoms. Because prenatal alcohol use and maternal depression affect infant outcomes, it is imperative to examine how the partner affects these maternal risk factors. The current study examined the effect of a latent construct of partner influence on maternal alcohol use and depressive symptoms, and the effects on infant development of these maternal factors. METHODS: Participants were 246 pregnant women from 2 sites in Western Ukraine from whom longitudinal data were collected as part of a multisite study. In the first trimester, mothers reported on relationship satisfaction, partner substance use, and socioeconomic status (SES). In the third trimester, they reported on alcohol use and depressive symptoms. Infants were assessed using the Bayley Scale of Infant Development (average age = 6.93 months). A latent construct titled partner influence was formed using partner substance use and measures of relationship satisfaction, including the frequency of quarreling, happiness in the relationship, and the ease of talking with the partner. Using structural equation modeling, a model was specified in which partner influence and SES predicted maternal alcohol use and depressive symptoms, which in turn predicted infant neurodevelopmental outcomes. RESULTS: Higher partner influence significantly predicted lower prenatal alcohol use and lower depressive symptoms, controlling for the effect of SES. Higher maternal prenatal alcohol use significantly predicted lower infant mental and psychomotor development. Maternal depressive symptoms did not predict infant development over and above the effect of alcohol use. CONCLUSIONS: Partner influence is an important contributor to prenatal alcohol use and maternal depressive symptoms, over and above the effect of SES. The significant paths from prenatal alcohol exposure to infant neurodevelopmental outcomes underscore the importance of partner influence during pregnancy.


Asunto(s)
Consumo de Bebidas Alcohólicas/psicología , Depresión/psicología , Análisis de Clases Latentes , Matrimonio/psicología , Complicaciones del Embarazo/psicología , Adolescente , Adulto , Desarrollo Infantil , Femenino , Humanos , Recién Nacido , Exposición Materna , Sistema Nervioso/crecimiento & desarrollo , Embarazo , Efectos Tardíos de la Exposición Prenatal , Estudios Prospectivos , Adulto Joven
16.
JMIR Mhealth Uhealth ; 8(4): e14721, 2020 04 06.
Artículo en Inglés | MEDLINE | ID: mdl-32250274

RESUMEN

BACKGROUND: Fetal alcohol spectrum disorders (FASD) affect approximately 2% to 5% of the US population. However, most families are unable to access FASD-informed interventions. Barriers to care include the lack of a knowledgeable and skilled workforce and family-level barriers such as limited financial resources, inability to access childcare, and stigma. As a result, families often try peer-to-peer and self-help support strategies. However, they often take these strategies from disparate sources, which have quite variable intervention quality and empirical support. OBJECTIVE: This study aimed to initiate systematic development and evaluation of a mobile health intervention (app) for caregivers raising children with FASD. Focus groups were conducted to elicit participant perspectives on app design and functionalities to inform further app development. METHODS: The app, called FMF Connect, was derived from the scientifically validated Families Moving Forward (FMF) Program, a clinician-delivered behavioral consultation intervention. FMF Connect was intended for caregiver self-delivery and included five main components: (1) Learning Modules, (2) Family Forum, (3) Library, (4) Notebook, and (5) Dashboard. Focus group methods were used to solicit perspectives from diverse families during the early stages of app development. Questions were asked about interface design, relevance of components and content, and perceived barriers and facilitators of use. A total of 25 caregivers participated in 7 focus groups across 5 US cities. Data were analyzed thematically. RESULTS: Focus group participants were generally enthusiastic about the app interface design and components. Four global positive impression themes emerged, including (1) ease of access, (2) how the app guides and organizes information, (3) connection to other users and information, and (4) ability to share some content with others. Themes arose not only in discussions relating to positive app features but also when participants were asked about motivators for app use. Participants related how these positive global themes could address some system-level barriers, such as limited access to services, feeling isolated, and increased advocacy needs related to the societal lack of FASD knowledge. Participants identified many positive features about individual app components and functionalities. They also communicated potential barriers to use and raised important concerns and considerations relating to several app components. These included recognizability of the app based on the logo, and the balance of following the planned intervention sequence versus obtaining immediate answers. Also mentioned were privacy and dynamics within the Family Forum. CONCLUSIONS: FMF Connect is a promising novel intervention with potential to reach many families in need and reduce significant barriers to care, resulting in a broader public health impact. Study findings will guide further app development both in terms of content and technological advances to optimize intervention effects. FMF Connect app development provides useful directions for other apps aimed at changing parenting practices.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal , Telemedicina , Envío de Mensajes de Texto , Adulto , Cuidadores , Niño , Femenino , Trastornos del Espectro Alcohólico Fetal/terapia , Grupos Focales , Humanos , Masculino , Persona de Mediana Edad , Embarazo
17.
Alcohol ; 86: 25-33, 2020 08.
Artículo en Inglés | MEDLINE | ID: mdl-32171771

RESUMEN

The 2019 Fetal Alcohol Spectrum Disorders Study Group (FASDSG) meeting was titled "Computational Approaches to Studying Behavioral Control and Individual Change". The theme was reflected in the presentations of two keynote speakers: A. David Redish, Ph.D., who spoke about computational psychiatry and vulnerabilities in decision-making processes, and Kevin Grimm, Ph.D., who spoke about contemporary machine learning approaches to studying individual change. The conference presented updates from three government agencies, and included short presentations by junior and senior investigators showcasing late-breaking FASD research. The conference was capped by H. Eugene Hoyme, M.D., FACMG, FAAP, the recipient of the 2019 Henry Rosett award for career-long contributions to the field.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal , Distinciones y Premios , Femenino , Humanos , Embarazo
18.
Res Dev Disabil ; 99: 103578, 2020 Jan 31.
Artículo en Inglés | MEDLINE | ID: mdl-32014800

RESUMEN

BACKGROUND: Caregivers of children with fetal alcohol spectrum disorders (FASD) have elevated levels of stress, which can negatively impact family functioning and caregivers' mental and physical health. Self-care is a critical resource to address caregivers' stress. AIMS: This study describes strategies and obstacles related to self-care reported by caregivers of children with FASD. It also examines how caregivers' perceived confidence in and frequency of self-care is related to stress, parenting attitudes, and family needs. METHODS & PROCEDURES: Forty-six caregivers of children with FASD identified self-care strategies and obstacles and rated their confidence and frequency of self-care. Additional measures of perceived parenting efficacy, stress, family needs, child behavior, and family demographics were administered. Correlation analyses examined associations between self-care and measures of child and family functioning. RESULTS: Self-care strategies and obstacles were varied. Greater reported confidence in self-care was associated with less parental distress and more satisfaction in the parenting role. Frequency of self-care was positively associated with confidence in self-care but not with any other measure of family functioning. CONCLUSIONS: Caregivers use a variety of strategies and face significant obstacles in self-care. Confidence in self-care may be associated with lower stress and greater satisfaction in the parenting role.

19.
Alcohol Clin Exp Res ; 43(10): 2242-2254, 2019 10.
Artículo en Inglés | MEDLINE | ID: mdl-31408192

RESUMEN

BACKGROUND: When the primary disabilities associated with fetal alcohol spectrum disorders (FASD) are not well supported, individuals are at higher risk for mental health problems and other secondary conditions. The Families on Track (FOT) intervention was designed to prevent secondary conditions and improve family functioning in children with FASD. Promising results from a pilot study demonstrated positive effects on child and caregiver outcomes immediately following the intervention. The objective of this study was to examine the sustainability of these effects 6 months postintervention. METHODS: Thirty children (ages 4 to 8) with prenatal alcohol exposure and their caregivers were enrolled in the original study. Families were randomized to the FOT intervention or an active comparison group that provided comprehensive assessment and individualized feedback. The intervention integrated a positive parenting curriculum and a child skills group. Families were assessed at baseline, postintervention, and 6-month follow-up visits. Follow-up data were available for 24 families on child and caregiver outcomes. Data were analyzed using effect size calculations and analysis-of-variance techniques. RESULTS: Relative to the comparison group, intervention families showed continued gains in parenting efficacy and maintained prior improvements in FASD knowledge over the follow-up period. Although intervention families reported a decrease in their needs being met over the follow-up period, they continued to report their needs being met to greater extent than those in the comparison group. Consistent with postintervention outcomes, children in both groups exhibited similar decreases in child disruptive behavior 6 months following the intervention. Unfortunately, positive gains seen at postintervention for child self-esteem and emotion regulation were attenuated at follow-up. CONCLUSIONS: This pilot study yielded promising effects on important areas of caregiver functioning. However, the intervention's impact on child functioning waned over time, suggesting the need for sustained or alternate child intervention.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal/terapia , Adulto , Déficit de la Atención y Trastornos de Conducta Disruptiva/etiología , Déficit de la Atención y Trastornos de Conducta Disruptiva/psicología , Déficit de la Atención y Trastornos de Conducta Disruptiva/terapia , Cuidadores , Niño , Preescolar , Curriculum , Familia , Retroalimentación , Femenino , Trastornos del Espectro Alcohólico Fetal/psicología , Estudios de Seguimiento , Humanos , Masculino , Pruebas Neuropsicológicas , Responsabilidad Parental , Educación del Paciente como Asunto , Proyectos Piloto , Autoimagen , Factores Socioeconómicos , Resultado del Tratamiento
20.
Alcohol ; 81: 47-55, 2019 12.
Artículo en Inglés | MEDLINE | ID: mdl-31173861

RESUMEN

The 2018 Fetal Alcohol Spectrum Disorders Study Group (FASDSG) meeting was entitled "Sex Differences and Vulnerability." The theme reflected the ongoing NIH initiative to address sex differences in both clinical and preclinical research. The first keynote speaker, Jill Becker, Ph.D., addressed sex differences in addiction in preclinical studies. The second keynote speaker, Meeyoung Min, Ph.D., discussed effects of gender on adolescent outcomes in poly-drug exposed children. The conference presented updates from three government agencies, a discussion panel of new data on FASD prevalence, and short presentations by junior and senior investigators showcasing late-breaking FASD research. The conference was capped by the presentation of Dr. Sarah Mattson, Ph.D., the recipient of the 2018 Henry Rosett award for career-long contributions to the field.


Asunto(s)
Trastornos del Espectro Alcohólico Fetal , Congresos como Asunto , Femenino , Humanos , Embarazo
SELECCIÓN DE REFERENCIAS
DETALLE DE LA BÚSQUEDA