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1.
Law Hum Behav ; 47(1): 83-99, 2023 02.
Artículo en Inglés | MEDLINE | ID: mdl-36931851

RESUMEN

OBJECTIVE: White and non-White adolescents report different experiences in the legal system. This disparity impacts their evaluations of, and attitudes toward, legal authorities such that non-White and older adolescents tend to perceive the legal system more negatively. Yet, many researchers assume that the process of legal socialization, which involves internalizing norms and information about the law and the legal system, is universal for all ages and races. HYPOTHESES: We hypothesized that legal socialization models would change over the course of adolescent development and would differ by race. METHOD: We used data from two longitudinal studies to examine racial differences in the integrated legal socialization model in early, middle, and late adolescence. Study 1 included 140 young adolescents (59% White, 41% non-White), and Study 2 included 296 midadolescents (82% White, 18% non-White) followed into late adolescence/emerging adulthood. RESULTS: Study 1 identified differences in the integrated legal socialization model for young White and non-White adolescents. Normative status predicted rule-violating behavior for White participants, whereas no predictors or mediators related to rule-violating behavior for non-White participants. In Study 2, legal and moral reasoning during midadolescence became relevant in the model for both groups. Enforcement status predicted rule-violating behavior for non-White youth, whereas normative status continued to predict rule-violating behavior for White youth. In late adolescence/emerging adulthood, differences in the model shifted toward the relation between reasoning and legal attitudes. CONCLUSIONS: Our findings suggest that legal socialization is a developmental process occurring and changing throughout adolescence and that this developmental process differs for White and non-White youth. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Asunto(s)
Actitud , Socialización , Humanos , Adolescente , Adulto , Factores Raciales , Principios Morales , Estudios Longitudinales
2.
Law Hum Behav ; 46(4): 290-312, 2022 08.
Artículo en Inglés | MEDLINE | ID: mdl-35878106

RESUMEN

OBJECTIVES: To determine whether prosocial rule-breaking exists as a separate construct from antisocial rule-breaking and to develop a valid rule-breaking scale with prosocial and antisocial subscales. HYPOTHESES: We hypothesized that (a) rule-breaking would have prosocial and antisocial subfactors; (b) the prosocial rule-breaking subscale would positively associate with prosocial intentions, empathy, moral identity, and guilt proneness, whereas the antisocial rule-breaking subscale would negatively associate with these same factors; and (c) the two subscales would predict prosocial and antisocial cheating behaviors, respectively. METHOD: We developed the Prosocial and Antisocial Rule-Breaking (PARB) scale using a sample of 497 undergraduates (Study 1) and 257 Amazon Mechanical Turk workers (Study 2). Participants completed all surveys (Studies 1 and 2) and took part in a between-subjects experiment (Study 2) in which cheating behavior was measured in two conditions-when cheating helps others (prosocial) or oneself (antisocial). RESULTS: The final PARB scale demonstrated the expected factor structure (comparative fit index = .96, Tucker-Lewis index = .93, root-mean-square error of approximation = .064; χ² = 177, df = 88, p < .001), with the prosocial (α = .81) and antisocial (α = .93) subscales showing good reliability. Prosocial rule-breaking was positively associated with prosocial intentions, empathy, and guilt proneness, whereas antisocial rule-breaking was negatively associated with these same factors. Each additional point in prosocial rule-breaking PARB score predicted a 37% increased likelihood of participating in protest behavior in an exploratory investigation (p = .025) and predicted a 268% increase in actual prosocial cheating behavior (p < .001) but did not predict antisocial cheating behavior (p = .293). Conversely, each additional point in antisocial rule-breaking PARB score did not predict protest participation (p = .410) but did predict a 69% increase in actual antisocial cheating behavior (p = .025). CONCLUSIONS: These findings suggest that our current understanding of rule-breaking is limited, as many types of rule-breaking are prosocially motivated and are not necessarily antisocial. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Asunto(s)
Principios Morales , Conducta Social , Trastorno de Personalidad Antisocial/diagnóstico , Empatía , Humanos , Reproducibilidad de los Resultados
3.
Am J Occup Ther ; 75(2): 7502205050p1-7502205050p11, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33657347

RESUMEN

IMPORTANCE: Limited research has described the timing of acquisition of the broad range of skills required for the transition to adulthood. OBJECTIVE: To describe the timing of the shift of responsibility for daily tasks from parent to child. DESIGN: This study used an existing data set of parent responses to 49 items in the Responsibility domain of the Pediatric Evaluation of Disability Inventory Computer Adaptive Tests. PARTICIPANTS: A U.S. nationally representative sample of 2,205 typically developing children and youth ages 0 to 20 yr. OUTCOMES AND MEASURES: Descriptive analyses focused on two ages: (1) starting age (when >50% of parents reported their child was taking at least some responsibility for a task) and (2) full responsibility age (when >50% of parents reported their child was taking full responsibility for the task). RESULTS: The process of shifting responsibility for daily life tasks from parent to child typically occurred over a long period. Many task items had an interval of 5 yr from starting age to full responsibility age; the longest interval was 15 yr. Youth began assuming responsibility for more complex tasks and tasks that involved more risk at ages 10 to 15. CONCLUSIONS AND RELEVANCE: Results can serve as a reference for the timing of the transition to greater self-management of daily life tasks across childhood and adolescence. Timing of responsibility shifts may reflect a combination of development of underlying capacities and social transitions. Executive functioning may be especially relevant for management of the more complex tasks required in daily life in adulthood. WHAT THIS ARTICLE ADDS: The transfer of responsibility for managing tasks of daily life from parents to children often extends over a period of many years. Clinicians may find the results helpful when discussing the future with parents of young people with disabilities and other chronic conditions and the tasks that their children must learn to manage for independent living as an adult.


Asunto(s)
Personas con Discapacidad , Automanejo , Adolescente , Adulto , Niño , Preescolar , Familia , Humanos , Lactante , Recién Nacido , Padres , Conducta Social , Adulto Joven
4.
J Prim Prev ; 42(1): 59-75, 2021 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-32671646

RESUMEN

Although researchers have found support for a relationship between temperature and violence and evidence of temporal patterns in violent crime, research on homicide shows less consistent results and no research on mass murder has been conducted. We address this by examining predictive factors in multi-victim shootings (those with four or more victims, including injured), a more general crime category than mass murder, but one with likely similar predictive factors. We used data from the Gun Violence Archive to understand the relationship between multi-victim shootings and temperature as well as other extrinsic factors. To avoid the confound between season and temperature, we employed temperature anomaly (the difference between actual and expected temperature) as a predictor of daily shooting rate. Using a generalized linear model for the daily count of multi-victim shootings in the U.S., we found that these events are significantly more frequent on weekends, some major holidays, hotter seasons, and when the temperature is higher than usual. Like other crimes, rates of multi-victim shooting vary systematically.


Asunto(s)
Heridas por Arma de Fuego , Homicidio , Humanos , Estaciones del Año , Violencia
5.
Qual Health Res ; 30(2): 236-249, 2020 01.
Artículo en Inglés | MEDLINE | ID: mdl-31466513

RESUMEN

People with intellectual disability (ID) are increasingly involved in stakeholder-engaged research, such as "inclusive research" (IR). To understand the processes that foster and maintain IR with individuals with ID, we used a narrative interview approach with co-researchers with ID (n = 6) and academic researchers (n = 8). We analyzed the data using grounded theory principles. We then developed a model describing how contextual factors and team-level factors and processes coalesce to foster and maintain IR collaborations. We observed that team members' values and characteristics are foundational to IR and drive a commitment to accessibility. Contextual factors, including funding and partnership duration, influence teams' processes and structures. These processes and structures influence the extent to which co-researchers perceive the IR team to be cofacilitated or academic-facilitated. Co-researcher involvement is partially maintained by perceived personal and societal benefits. Optimizing the relationship between these factors may support involvement of people with ID in stakeholder-engaged research projects.


Asunto(s)
Investigación Participativa Basada en la Comunidad/métodos , Conducta Cooperativa , Discapacidad Intelectual/psicología , Relaciones Interprofesionales , Investigadores/psicología , Adulto , Australia , Europa (Continente) , Femenino , Humanos , Entrevistas como Asunto , Estados Unidos
6.
Qual Health Res ; 30(11): 1632-1646, 2020 09.
Artículo en Inglés | MEDLINE | ID: mdl-32564671

RESUMEN

We conducted a meta-synthesis to explore how Asian immigrant parents in the United States enact their perceived parental role while using health and educational services for their child with developmental disabilities. We identified 11 qualitative studies for analysis, and examined these studies using a constant comparative approach and thematic analysis informed by role theory and acculturation theory. Based on our analysis, five themes related to parents' role enactment emerged: (a) parents perceive a multifaceted parental role; (b) parents' individual factors influence their role enactment; (c) system factors influence parents' role enactment; (d) parents use coping strategies to address role dissatisfaction; and (e) parental role enactment is a continuously evolving process influenced by acculturation, which spirals them toward their ultimate goal of helping their child thrive. Findings can inform practitioners' and researchers' understanding of how to create a culturally safe environment to support Asian immigrant parents in realizing their parental role.


Asunto(s)
Discapacidades del Desarrollo , Emigrantes e Inmigrantes , Aculturación , Niño , Humanos , Responsabilidad Parental , Padres , Estados Unidos
7.
Am J Occup Ther ; 74(6): 7406205070p1-7406205070p10, 2020.
Artículo en Inglés | MEDLINE | ID: mdl-33275567

RESUMEN

IMPORTANCE: No study has directly investigated which variables are associated with the shift of responsibility for managing daily tasks from parent to child in the transition to adulthood. OBJECTIVE: To examine characteristics associated with responsibility for managing daily life tasks in youth with and without disabilities. DESIGN: A secondary data analysis of parent-report data on typically developing (TD) youth and youth with disabilities. SETTING: An online panel that has regularly participated in online surveys. PARTICIPANTS: A nationally representative sample of 2,205 TD U.S. children and youth, ages 0 to 20 yr, 11 mo (about 100 children per age year) and a sample of 617 children and youth with disabilities, ages 0 to 20 yr, 11 mo. OUTCOMES AND MEASURES: The dependent variable was the Responsibility domain scaled score (from the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test), which reflects the extent to which responsibility for daily tasks has shifted from parent to youth. RESULTS: Youth with higher levels of responsibility were older in age, reported to be more focused, and youngest in birth order (TD, R 2 = .79; disability, R 2 = .35). Youth with developmental delay, intellectual disability, autism spectrum disorder, or orthopedic or movement impairments had assumed less responsibility. CONCLUSIONS AND RELEVANCE: Other personal characteristics in addition to disability may have important influences on parents' decision making as they prepare their children to manage daily life tasks. WHAT THIS ARTICLE ADDS: Clinicians who work with adolescents in the process of transition to adulthood need to consider the potential influence of the personal characteristics, such as birth order and child temperament, on preparation for adulthood.


Asunto(s)
Trastorno del Espectro Autista , Personas con Discapacidad , Discapacidad Intelectual , Adolescente , Adulto , Niño , Preescolar , Humanos , Lactante , Recién Nacido , Padres , Conducta Social , Adulto Joven
8.
J Appl Res Intellect Disabil ; 33(5): 992-1004, 2020 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-32119173

RESUMEN

BACKGROUND: Young adults with intellectual/developmental disabilities and co-occurring mental health conditions (IDD-MH) experience significant mental health disparities. Barriers to services include transportation and stigma associated with services. Peer mentoring (PM) may be one solution to these barriers. METHODS: We conducted exploratory research to develop a PM intervention for young adults with IDD-MH by partnering with 3 young adults with IDD-MH and a seven-member advisory board. In addition, we conducted focus groups with mental health clinicians (n = 10), peer providers (n = 9), and transition specialists (n = 20) to identify the desired PM outcomes and features and content that may facilitate these outcomes. RESULTS: Prioritized outcome: identifying and utilizing leisure activities as coping strategies. PM features: mentors should use relationship- and outcome-driven actions to operationalize a mentee-centred approach. Features and content considerations: safety, mentor matching, degree of structure, mentor training and support, and collaboration with mentees' support teams. DISCUSSION: Findings are aligned with previous research on PM.


Asunto(s)
Discapacidad Intelectual , Tutoría , Niño , Discapacidades del Desarrollo , Humanos , Salud Mental , Mentores , Adulto Joven
9.
Am J Occup Ther ; 73(6): 7306150010p1-7306150010p10, 2019.
Artículo en Inglés | MEDLINE | ID: mdl-31891338

RESUMEN

Throughout the years, leaders in the profession have challenged us to affirm the value of occupational therapy and to substantiate what we do. Occupational therapy practitioners have always focused on what most matters to clients in what is now called client-centered or patient-centered practice. We have also focused on client function to enable participation in everyday life. In a welcome shift, society's views about health and meaning-making are becoming more congruent with the long-standing ideals of occupational therapy. Now, more than ever, we have a powerful opportunity to communicate our competence. But how do we assert our competence and the complexity of occupation with confidence? This lecture draws on the conceptual foundations of theories about competence and confidence and provides examples from the research literature, and a practitioner and client narrative to illustrate the factors that enable us to effectively demonstrate the value of occupational therapy.


Asunto(s)
Competencia Clínica , Terapeutas Ocupacionales/psicología , Terapia Ocupacional/normas , Humanos , Ocupaciones , Atención Dirigida al Paciente
10.
Neurocrit Care ; 28(1): 83-92, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-28744846

RESUMEN

BACKGROUND: There is a lack of data describing the risk factors for extubation failure (EF) or tracheostomy placement in pediatric neurocritical care (NCC) patients. METHODS: A retrospective chart review of children admitted to the pediatric intensive care unit who were intubated for >24 h with an acute neurocritical illness and had an extubation attempt. Bivariate and multivariate statistical analysis was performed to determine significant associations of demographic, neurologic, pulmonary, and clinical variables with EF and tracheostomy placement. Analysis of predictive factors for EF (within 48 h) and tracheostomy placement during the hospitalization was conducted on a first extubation attempt group (n = 193) and a second attempt group (n = 23) who experienced either EF or a "late re-intubation" (>48 h-7 days). RESULTS: Traumatic brain injury (37.3%) and seizures/status epilepticus (31.4%) were the most common diagnoses with neuromuscular weakness patients having the highest risk for EF and tracheostomy placement. EF occurred in 20/193 (10.4%) patients after their first attempt and 6/23 (26.1%) after a second attempt. Compared to those with a fair/strong cough, patients with a weak/absent cough had a relative risk (RR) of 9.4 for EF (95% CI, 4.9-17.9, p < 0.001) and 6.7 (95% CI, 2.3-18.9, p = 0.01) for tracheostomy placement on the first and second attempts, respectively. Glasgow Coma Score (GCS), endotracheal tube (ETT) secretion characteristics, and pulmonary variables were not associated with EF or tracheostomy placement. CONCLUSIONS: A weak/absent cough reflex is associated with an increased risk of failing extubation and placement of a tracheostomy in intubated pediatric NCC patients.


Asunto(s)
Extubación Traqueal/estadística & datos numéricos , Unidades de Cuidado Intensivo Pediátrico , Intubación Intratraqueal/estadística & datos numéricos , Enfermedades del Sistema Nervioso/terapia , Respiración Artificial/estadística & datos numéricos , Traqueostomía/estadística & datos numéricos , Lesiones Traumáticas del Encéfalo/terapia , Niño , Preescolar , Enfermedad Crítica , Femenino , Humanos , Lactante , Masculino , Estudios Retrospectivos , Factores de Riesgo , Estado Epiléptico/terapia
11.
OTJR (Thorofare N J) ; 35(3): 169-77, 2015 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-26594739

RESUMEN

In this article, we highlight the distinctive features of a feasibility study, identify the main objectives and guiding questions of a feasibility study, and illustrate the use of these objectives. We synthesized the research methods literature related to feasibility studies to identify five overarching objectives of feasibility studies that focus on social and behavioral interventions. Feasibility studies are designed to answer the overarching question: Can it work? The main objectives of feasibility include the assessment of recruitment capability and resulting sample characteristics, data collection procedures and outcome measures, acceptability of the intervention and study procedures, resources and ability to manage and implement the study and intervention, and preliminary evaluation of participant responses to the intervention. For each objective, we identified follow-up questions designed to assist the researchers to understand barriers to the ultimate success of the research.


Asunto(s)
Trastorno Autístico/psicología , Estudios de Factibilidad , Terapia Ocupacional/métodos , Proyectos de Investigación , Conducta Social , Grabación en Video , Adolescente , Niño , Recolección de Datos/métodos , Humanos , Masculino , Evaluación de Resultado en la Atención de Salud , Aceptación de la Atención de Salud , Selección de Paciente
12.
Telemed J E Health ; 20(3): 282-92, 2014 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-24476192

RESUMEN

BACKGROUND: The purpose of this document is to provide initial recommendations to telemental health (TMH) professionals for the selection of assessment and outcome measures that best reflect the impacts of mental health treatments delivered via live interactive videoconferencing. MATERIALS AND METHODS: The guidance provided here was created through an expert consensus process and is in the form of a lexicon focused on identified key TMH outcomes. RESULTS: Each lexical item is elucidated by a definition, recommendations for assessment/measurement, and additional commentary on important considerations. The lexicon is not intended as a current literature review of the field, but rather as a resource to foster increased dialogue, critical analysis, and the development of the science of TMH assessment and evaluation. The intent of this lexicon is to better unify the TMH field by providing a resource to researchers, program managers, funders, regulators and others for assessing outcomes. CONCLUSIONS: This document provides overall context for the key aspects of the lexicon.


Asunto(s)
Servicios de Salud Mental , Evaluación de Procesos y Resultados en Atención de Salud , Telemedicina , Terminología como Asunto , Consenso , Humanos , Trastornos Mentales/terapia
13.
Law Hum Behav ; 38(6): 602-17, 2014 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-25243981

RESUMEN

Traditionally, legal socialization theory and research has been dominated by a cognitive developmental approach. However, more recent work (e.g., Fagan & Tyler, 2005) has used procedural justice to explain the legal socialization process. This article presents 2 studies that expand this approach by testing a procedural justice model of legal socialization in terms of legal and nonlegal authority. In Study 1, participants completed surveys assessing the degree to which they perceived 3 authorities (police officers, parents, and teachers) as procedurally fair, the degree to which they perceived the authorities as legitimate, how cynical they were about laws, and the extent of their rule violation during the past 6 months. Across all 3 authorities, legitimacy and legal cynicism mediated the relation between procedural justice and rule violation. Study 2 examined the model with the same 3 authority types using experimental methods. Participants read 3 scenarios describing an interaction between an adolescent and an authority figure where a rule is enforced. Within each scenario, we manipulated whether the adolescent had a voice and whether the authority enforced the rule impartially. After reading each scenario, participants rated the authority's legitimacy, their cynicism toward the authority's rule, and the likelihood they would violate the rule. Again, legitimacy and rule cynicism mediated the relation between impartiality, voice, and rule violation. In addition, impartiality had a stronger effect in the parent and teacher scenarios, whereas voice had a stronger effect in the police scenario. Results are discussed in terms of expanding legal socialization to nonlegal contexts and applying legal socialization research to prevention and intervention strategies.


Asunto(s)
Actitud , Criminales/psicología , Jurisprudencia , Ajuste Social , Adolescente , Docentes , Femenino , Humanos , Relaciones Interpersonales , Masculino , Modelos Teóricos , Padres , Encuestas y Cuestionarios
14.
Am J Occup Ther ; 68(4): 454-62, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-25005509

RESUMEN

PURPOSE. To describe parents' concerns and hopes for their children who would be receiving occupational therapy using a sensory integration approach. METHOD. Content analysis of 275 parental responses to three open-ended questions on developmental-sensory history intake forms. FINDINGS. Parents' descriptions of why they sought for their children were categorized into four overarching concerns about their children's challenges: self-regulation, interacting with peers, participating in skilled motor activities, and self-confidence. Parents often linked these concerns together, revealing explanatory models of how they make sense of potential relationships among their children's challenges and how these challenges affect occupational performance. Parents hoped occupational therapy would help their children develop self-understanding and frustration tolerance to self-regulate their behavior in socially acceptable ways. IMPLICATIONS. Assessment and intervention should explicitly focus on links among self-regulation, social participation, skills, and perceived competence to address parents' expectations.


Asunto(s)
Esperanza , Terapia Ocupacional , Padres/psicología , Trastornos de la Sensación/rehabilitación , Niño , Desarrollo Infantil , Preescolar , Femenino , Humanos , Masculino , New England , Evaluación de Resultado en la Atención de Salud , Investigación Cualitativa
15.
Am J Occup Ther ; 68(5): 506-13, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-25184462

RESUMEN

This study examined the reliability and validity of the structural section of the Ayres Sensory Integration® Fidelity Measure© (ASIFM), which provides a method for monitoring the extent to which an intervention was implemented as conceptualized in studies of occupational therapy using sensory integration intervention methods (OT-SI). We examined the structural elements of the measure, including content of assessment reports, availability of specific equipment and adequate space, safety monitoring, and integration of communication with parents and other team members, such as collaborative goal setting with parents or family and teacher education, into the intervention program. Analysis of self-report ratings by 259 occupational therapists from 185 different facilities indicated that the structural section of the ASIFM has acceptable interrater reliability (r ≥ .82) and significantly differentiates between settings in which therapists reportedly do and do not practice OT-SI (p < .001).


Asunto(s)
Investigación sobre Servicios de Salud/normas , Terapia Ocupacional/métodos , Trastornos de la Sensación/rehabilitación , Humanos , Evaluación de Procesos, Atención de Salud
16.
Am J Occup Ther ; 68(5): e149-53, 2014.
Artículo en Inglés | MEDLINE | ID: mdl-25184475

RESUMEN

This article presents the current state of measurement in the area of sensory integration within the field of occupational therapy in three areas: (1) phenotypic characterization, (2) intervention adherence and dosage, and (3) outcome measurement. The need for additional measurement tools in all three areas is addressed. In regard to outcome measurement of occupational therapy using sensory integration, the use of both qualitative and quantitative methods to obtain outcome data is recommended. Further, a strategy is recommended for obtaining outcome data from direct report from the child or other stakeholder.

17.
Osteoarthr Cartil Open ; 6(3): 100494, 2024 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-39021877

RESUMEN

Objective: Negative psychological beliefs like fear avoidance and catastrophizing can interfere with exercise engagement in people with knee osteoarthritis (OA). Mindfulness, when integrated with exercise, could potentially address both psychological and physical impairments. Our objectives were to optimize and assess the feasibility of a novel telehealth, group-based mindful exercise intervention for people with knee OA. Methods: We conducted a decentralized randomized controlled trial where participants (n â€‹= â€‹40) with symptomatic knee OA were randomized into mindful exercise (n â€‹= â€‹21) or exercise-only (n â€‹= â€‹19) groups. Both groups received supervised group-based interventions weekly for 8-weeks via Zoom. Primary outcomes were safety, fidelity, and feasibility of the mindful exercise intervention. Participants completed patient-reported outcomes (PRO) for pain, function, and psychological measures at baseline, week-8, and week-14. Results: Participants were from 21 US states; >90% identified as having White race, 16% were from rural areas, and approximately 40% had an annual income < $50,000. At 8-weeks, mindful exercise and exercise groups had retention rates of 86% (18/21) and 100% (19/19), and attendance was 54% (11.4/21) and 68% (13/19) respectively. There were no adverse events in the mindful exercise group and four in the exercise group related to exacerbation of knee pain. Preliminary findings showed numerically larger improvements in several PROs for the mindful exercise group. Conclusion: An 8-week telehealth, group-based, mindful exercise intervention was safe for people with knee OA. Our decentralized approach was feasible in terms of recruitment and retention. Further refinement is needed to improve intervention attendance and participant diversity.

18.
J Autism Dev Disord ; 2024 Jan 29.
Artículo en Inglés | MEDLINE | ID: mdl-38285097

RESUMEN

PURPOSE: Research documents poor outcomes for autistic adults in the domains of employment, independent living, and social relationships. Measurement and sample limitations in prior studies may have amplified past estimates of poor outcomes. The goal of the current study was to improve upon past approaches and to create and describe a measurement approach to capture adult outcomes that reflected the context of young adulthood and the perspectives of autistic individuals, pairing objective outcome indicators with subjective satisfaction indicators. METHODS: Thirty-six autistic young adults (mean age 19.8 years) and a parent completed self-report surveys. Using these data, we defined an objective and subjective (i.e., satisfaction) outcome indicator in each of three domains: productivity (employment or post-secondary education), social well-being (frequency of contact with friends), and living situation (autonomy). RESULTS: Three-quarters of young adults experienced at least 5 out of 6 positive outcomes. Over 90% were engaged in school, work, or a structured transition program, and an equal percentage were satisfied with their productivity activity. Over three-quarters of adults had a good amount of contact with friends and were satisfied with their social life. Most young adults had a moderate level of autonomy in their daily lives, and all were satisfied with their living situation. CONCLUSION: Tailoring outcome measurement approaches specifically for autistic young adults provided a more optimistic portrayal of outcomes than previously noted in the literature. The approach used better reflects a neurodiversity approach and may be useful for evaluating the effectiveness of transition services or interventions.

19.
Cleft Palate Craniofac J ; 50(2): 201-6, 2013 Mar.
Artículo en Inglés | MEDLINE | ID: mdl-22273627

RESUMEN

Objective : This exploratory research sought to extend the cleft phenotype by identifying movement-related soft tissue appearance changes in the midfacial region in individuals with cleft lip/palate or those with genetic susceptibility to cleft lip/palate (unaffected relatives). The cleft phenotype (clinically identified orofacial cleft or subclinical orbicularis oris defect) was hypothesized to be associated with movement related appearance changes in the midfacial region, e.g., with furrowing and dimpling during speech. Design : Changes in the appearance of skin in the midfacial region, including a newly identified phenotypic feature, nasolabial fold (NLF) discontinuity, were described and compared across groups. Participants : Individuals with cleft lip (n  =  42), unaffected relatives of persons with a cleft (n  =  57) and healthy controls (n  =  41) were compared. Results : Frequencies of NLF discontinuity differed across cleft, relative, and control groups. NLF discontinuities were observed more frequently in individuals with a cleft phenotype (overt cleft or previously identified orbicularis oris muscle defect) than in those with no underlying muscular defect (Fisher exact test, P  =  .014). Conclusion : Results suggest that the appearance of facial soft tissue during movement of the midface is moderated at least in part by underlying cleft risk factors, indicating certain facial movements as candidate physical markers for extension of the cleft phenotype.


Asunto(s)
Surco Nasolabial , Habla , Labio Leporino/genética , Fisura del Paladar/genética , Humanos , Fenotipo
20.
J Gen Intern Med ; 27(12): 1626-34, 2012 Dec.
Artículo en Inglés | MEDLINE | ID: mdl-22821569

RESUMEN

BACKGROUND: Uncontrolled hypertension remains a significant problem for many patients. Few interventions to improve patients' hypertension self-management have had lasting effects. Previous work has focused largely on patients' beliefs as predictors of behavior, but little is understood about beliefs as they are embedded in patients' social contexts. OBJECTIVE: This study aims to explore how patients' "explanatory models" of hypertension (understandings of the causes, mechanisms or pathophysiology, course of illness, symptoms and effects of treatment) and social context relate to their reported daily hypertension self-management behaviors. DESIGN: Semi-structured qualitative interviews with a diverse group of patients at two large urban Veterans Administration Medical centers. PARTICIPANTS (OR PATIENTS OR SUBJECTS): African-American, white and Latino Veterans Affairs (VA) primary care patients with uncontrolled blood pressure. APPROACH: We conducted thematic analysis using tools of grounded theory to identify key themes surrounding patients' explanatory models, social context and hypertension management behaviors. RESULTS: Patients' perceptions of the cause and course of hypertension, experiences of hypertension symptoms, and beliefs about the effectiveness of treatment were related to different hypertension self-management behaviors. Moreover, patients' daily-lived experiences, such as an isolated lifestyle, serious competing health problems, a lack of habits and routines, barriers to exercise and prioritizing lifestyle choices, also interfered with optimal hypertension self-management. CONCLUSIONS: Designing interventions to improve patients' hypertension self-management requires consideration of patients' explanatory models and their daily-lived experience. We propose a new conceptual model - the dynamic model of hypertension self-management behavior - which incorporates these key elements of patients' experiences.


Asunto(s)
Conductas Relacionadas con la Salud , Conocimientos, Actitudes y Práctica en Salud , Hipertensión/diagnóstico , Hipertensión/tratamiento farmacológico , Educación del Paciente como Asunto , Autocuidado/métodos , Anciano , Anciano de 80 o más Años , Antihipertensivos/administración & dosificación , Determinación de la Presión Sanguínea/métodos , Estudios Transversales , Manejo de la Enfermedad , Femenino , Humanos , Estilo de Vida , Masculino , Persona de Mediana Edad , Modelos Educacionales , Cooperación del Paciente/estadística & datos numéricos , Índice de Severidad de la Enfermedad , Resultado del Tratamiento , Estados Unidos , United States Department of Veterans Affairs , Población Urbana
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