RESUMEN
This study examined rates of and contributing factors to self-determination among young adults with autism spectrum disorder. Caregivers of young adults with autism spectrum disorder, 16-25 years, from five Autism Treatment Network sites completed surveys about their young adults' transition experiences including the American Institutes for Research Self-Determination measure. Data were analyzed using univariate and multivariate analysis. Caregivers (n = 479) reported their young adults with autism spectrum disorder as having moderate overall self-determination (x = 38; standard deviation = 9.04) with low capacity (x = 15.3; standard deviation = 5.67) and high opportunities at home (x = 23.1; standard deviation = 4.59). Young adults with autism spectrum disorder with intellectual disability or severe autism spectrum disorder symptomology experience significant disparities in overall self-determination compared to those without intellectual disability and less frequent symptom expression and severity. Barring severity indicators, there were few significant predictors of self-determination. Findings show a breakdown in self-determination skill-building. Young adults with autism spectrum disorder with intellectual disability or severe symptomology experienced significant disparities in self-determination. These findings show that current promotion of self-determination is not meeting the needs of young adults with autism spectrum disorder. Future interventions must identify what supports young adults with autism spectrum disorder need to capitalize on these opportunities to be independent and exert autonomy in their daily lives.
Asunto(s)
Trastorno del Espectro Autista/psicología , Autonomía Personal , Adolescente , Adulto , Trastorno del Espectro Autista/complicaciones , Cuidadores , Femenino , Humanos , Discapacidad Intelectual/complicaciones , Discapacidad Intelectual/psicología , Masculino , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Little research exists to describe sexual and romantic relationships among adolescents and young adults with autism spectrum disorder (ASD) from their perspectives. Sexuality and intimacy are developmentally important and influence health and quality of life for all adolescents and young adults, including those with ASD. This study explored and compared the sex and relationship experiences of 27 adolescents and young adults with ASD (males = 20). Adolescents and young adults participated in semi-structured interviews to explore this topic. Using theme analysis, we uncovered four thematic categories: (1) interest in relationships, (2) ideal partners, (3) realities of adolescent and young adult relationships, and (4) advice about sex and relationships. Although many adolescents and young adults expressed wanting a relationship, few reported having partners. Among those that did, their actual relationships rarely met ideals. Most adolescents and young adults talked with parents and friends but not healthcare providers about sex and relationships. All adolescents and young adults described the need for additional education. Adolescents and young adults express the need for education that covers basic safety and sexual health topics as well as social/relationship skills building and courtship modeling. These findings can inform the design of tailored sexual health intervention. Future research should examine specific issues related to sexuality from the adolescents' and young adults' perspectives.
Asunto(s)
Trastorno del Espectro Autista/psicología , Calidad de Vida/psicología , Conducta Sexual/psicología , Parejas Sexuales/psicología , Adolescente , Adulto , Femenino , Humanos , Masculino , Adulto JovenRESUMEN
Background: Adolescents with autism spectrum disorder (ASD) experience challenges achieving independence. Few studies assess both adolescents and caregivers' needs as adolescents transition to adult health care. Objective/Methods: This study explored and compared the health-related independence experiences of 27 adolescents with ASD and their caregivers. Caregivers participated in focus groups and adolescents participated in semi-structured interviews. Results: Thematic analysis of dyads' responses highlighted three common themes: (a) efforts toward independence, (b) low self-efficacy for adolescents' independence, and (c) desire for independence. Nuances in responses indicated that although members of dyads shared many experiences, they were not communicating these experiences with each other. Conclusions: Results suggest both groups understand the importance of health-related independence and are motivated to achieve independence but lack skills and supports. Improved communication about experiences and goals between caregivers, adolescents, and the care team are needed. These findings can inform future interventions to better support adolescents' transition to adult health care.
Asunto(s)
Adaptación Psicológica , Trastorno del Espectro Autista/psicología , Cuidadores/psicología , Transición a la Atención de Adultos , Adolescente , Trastorno del Espectro Autista/terapia , Femenino , Grupos Focales , Humanos , Masculino , Investigación Cualitativa , Autoeficacia , Apoyo Social , Adulto JovenRESUMEN
BACKGROUND: The Maternal Child Health Bureau identified six indicators of quality and accessibility essential in achieving coordinated, family-centered, community-based care for children with special healthcare needs (CSHCN). Previous research examined associations between children with single conditions and individual indicators. We sought to identify disparities in meeting quality and accessibility indicators for children with different condition types. METHODS: The 2009-2010 National Survey of CSHCN is a nationally representative cross-sectional study with caregiver's reports on 40,242 children (0-17 years). Children were categorized into one of seven conditions groups: physical health (PHC), mental health (MHC), developmental disability (DD), physical and mental (PHC and MHC), physical and developmental (PHC and DD), mental and developmental (MHC and DD) and physical, mental and developmental (PHC, MHC, and DD). Unadjusted and adjusted analyses determined associations between condition group and quality and access indicators. RESULTS: Children with DD, alone or in combination with another condition, were significantly less likely to meet each indicator (p < 0.01) after adjusting for individual demographic, child's activity limitations and family-related characteristics. Compared with children with PHC, those with all three conditions (PHC, MHC, and DD) had the lowest odds of access to medical home (61 % decreased odds (DO)), community services (67 % DO), and adequate insurance (26 % DO); MHC and DD had the lowest odds of partnering in decision making (51 % DO); DD had the lowest odds of healthcare transition service (66 % DO). CONCLUSIONS: Children with DD and multiple conditions experience disparities in quality and access to healthcare services, meeting most indictors half as often as other CSHCN.
Asunto(s)
Niños con Discapacidad/rehabilitación , Accesibilidad a los Servicios de Salud/normas , Disparidades en Atención de Salud/tendencias , Calidad de la Atención de Salud/normas , Adolescente , Distribución de Chi-Cuadrado , Niño , Preescolar , Estudios Transversales , Femenino , Humanos , Lactante , Masculino , Indicadores de Calidad de la Atención de Salud/tendencias , Transición a la Atención de Adultos/normas , Estados UnidosRESUMEN
OBJECTIVE: Youth with autism spectrum disorder (ASD) experience significant challenges transitioning to adulthood. We utilized Photovoice to better understand youth's desires for and perspectives on becoming adults. METHOD: Youth with ASD (N = 11) photographed their life experiences, attended group and individual photo-sharing and discussion sessions, and exhibited their work publicly. Thematic analysis was used to identify salient recurring patterns in the data. RESULTS: Thematic analysis identified important topics in session transcripts and 184 photographs. Youth with ASD expressed many perspectives about their adult lives, which centered around 3 themes: the meaning of adulthood; desire for independent living; and employment goals. CONCLUSION: Findings identified what youth with ASD want and need to achieve adulthood. This study demonstrated the utility of a new methodology to provide opportunities for youth to share their experiences and define their priorities.
Asunto(s)
Trastorno del Espectro Autista/psicología , Empleo/psicología , Vida Independiente/psicología , Fotograbar , Adolescente , Adulto , Femenino , Humanos , Masculino , Narrativas Personales como Asunto , Adulto JovenRESUMEN
BACKGROUND: Adolescents with autism spectrum disorder (ASD) face many challenges as they age into adulthood. Because little is known about the perspectives of caregivers and youth during this critical transition, this study explored their social, educational, and vocational needs and experiences. METHOD: Two focus groups were conducted with youth with ASD (n = 13) and two focus groups were conducted with their caregivers (n = 19), where theme analysis strategies derived from Grounded Theory were utilized to identify themes. RESULTS: Both groups experienced fear and anxiety about transitioning, unmet needs were also high, leaving caregivers struggling to fill gaps. Most caregivers and youth reported lacking individualized services. Caregivers faced difficulty in motivating youth and creating opportunities for education and employment. Although youth have future goals, they were unaware of steps needed to accomplish them and hesitant to talk to caregivers. CONCLUSIONS: Findings indicate considerable unmet needs for caregivers and youth with ASD. Perspectives of both groups should be considered when developing programmes and educating providers.
Asunto(s)
Actitud Frente a la Salud , Trastorno Autístico/psicología , Familia/psicología , Miedo/psicología , Adolescente , Adulto , Femenino , Grupos Focales , Humanos , Masculino , Adulto JovenRESUMEN
Children with autism spectrum disorders (ASD) experience difficulty accessing health care services. Using parent-reported data from the 2009-2010 National Survey of Children with Special Health Care Needs, we examined whether having a medical home reduces unmet need for specialty care services for children with ASD (n = 3,055). Descriptive statistics and Chi square tests identified sample characteristics and examined the relationship between unmet needs and a standardized measure of medical home. Logistic regression models explored the individual impact of demographic, condition-specific and medical home variables on unmet need. Parents reported that nearly all children had a need for specialty services, 36 % had an unmet need, and 23.9 % had a medical home. Children who had fewer unmet needs were more likely to have received family-centered and coordinated care through a medical home, and this relationship remained significant even when demographic and condition-specific variables were taken into account. These findings suggest ways to improve access to care for children with ASD through enhanced family-centered and coordinated care within the medical home.
Asunto(s)
Trastornos Generalizados del Desarrollo Infantil , Servicios de Salud del Niño/estadística & datos numéricos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Atención Dirigida al Paciente/estadística & datos numéricos , Adolescente , Niño , Preescolar , Femenino , Necesidades y Demandas de Servicios de Salud/estadística & datos numéricos , Encuestas Epidemiológicas , Humanos , Lactante , Recién Nacido , Modelos Logísticos , Masculino , Estados Unidos/epidemiologíaRESUMEN
Adolescents with Autism Spectrum Disorder diagnosis often have complex comorbid physical and mental health conditions. These youth rely heavily on their medical providers and struggle through the often rocky transition out of pediatric care into adulthood and adult-centered care. This study is among the first to qualitatively examine the health care transition experiences of youth with Autism Spectrum Disorder and their caregivers. We conducted four focus groups with youth with Autism Spectrum Disorder (n = 13) and their caregivers (n = 19) and used thematic analysis strategies to identify key themes. Parents' discussions emphasized (a) loss of relationship with provider and lack of support transitioning from pediatric to adult care, (b) providers' lack of knowledge about Autism Spectrum Disorder, and (c) concerns about losing guardianship. Youth emphasized their confusion and anxiety around (a) medical providers' role, especially in the transition to adulthood; and (b) managing their medical lives independently. Our findings are important because they not only improve our understanding of health care transition needs among youth with Autism Spectrum Disorder and their caregivers but demonstrate a sound methodological procedure to facilitate input from youth with Autism Spectrum Disorder.
Asunto(s)
Trastorno Autístico/terapia , Cuidadores , Transición a la Atención de Adultos , Adolescente , Adulto , Trastorno del Espectro Autista/psicología , Trastorno del Espectro Autista/terapia , Trastorno Autístico/psicología , Cuidadores/psicología , Femenino , Grupos Focales , Humanos , Vida Independiente/psicología , Masculino , Padres/psicología , Satisfacción del Paciente , Adulto JovenRESUMEN
OBJECTIVE: Little is known about accessibility to health care transition (HCT) services (HCT) for youth with autism spectrum disorders (ASD). This study examined how often youth with ASD receive HCT services and how access varied by individual, family, and health system characteristics. METHOD: Questionnaires were completed by 101 parents of youth with ASD (ages 12-17 years) enrolled in a national online autism registry. Descriptive statistics and bivariate analysis were used to examine a composite HCT variable and its components. RESULTS: Fewer than 15% of youth received HCT services. Although 41% received at least 1 HCT discussion, only 3% received all 3. One-quarter had a discussion with their health care provider about transitioning to an adult provider, adult health care needs, or insurance retention, and 31% of providers encouraged youth to take on more responsibilities. Most caregivers reported not needing 1 or more of the discussions. RESULTS varied significantly when the sample was divided by age, with older youth more likely to have received transition services than younger adolescents. CONCLUSIONS: These findings indicate a significant disparity in access to HCT services for youth with ASD. Further research is needed to understand this disparity and develop interventions to improve HCT both for youth with ASD and those with other disabling health conditions. Additionally, many caregivers do not recognize the importance of HCT services. Education and training for caregivers, youth, and providers is essential to ensure all parties are working together to address transition issues early and often.
Asunto(s)
Trastornos Generalizados del Desarrollo Infantil/rehabilitación , Encuestas de Atención de la Salud/métodos , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Transición a la Atención de Adultos/estadística & datos numéricos , Adolescente , Factores de Edad , Niño , Femenino , Encuestas de Atención de la Salud/estadística & datos numéricos , Humanos , Masculino , Evaluación de Necesidades/estadística & datos numéricos , Padres , Encuestas y Cuestionarios , Estados UnidosRESUMEN
OBJECTIVE: Little is known about accessibility to health care transition (HCT) services for youth with autism spectrum disorder (ASD). This study expands our understanding by examining the receipt of HCT services in youth with ASD compared with youth with other special health care needs (OSHCN). METHODS: We used the 2005-2006 National Survey of Children with Special Health Care Needs to examine receipt of HCT services for youth (aged 12-17 years) with ASD and youth with OSHCN. Logistic regression analyses explored whether individual, family, or health system factors were associated with receipt of HCT services for youth with ASD. RESULTS: Whereas half of youth with OSHCN received HCT services, less than a quarter of youth with ASD did. Only 14% of youth with ASD had a discussion with their pediatrician about transitioning to an adult provider, less than a quarter had a discussion about health insurance retention, and just under half discussed adult health care needs or were encouraged to take on appropriate responsibility. Logistic regression analyses indicated that having a developmental disability or multiple health conditions in addition to ASD and quality of health care were strong predictors of HCT, whereas demographic and family variables accounted for little variance. CONCLUSIONS: Youth with ASD experience disparities in access to HCT services. Youth with comorbid conditions are at greatest risk for poor access to HCT services and increased quality of care has a positive effect. Research is needed to understand barriers to care and develop policy and practice guidelines tailored for youth with ASD.
Asunto(s)
Trastornos Generalizados del Desarrollo Infantil/terapia , Continuidad de la Atención al Paciente , Encuestas de Atención de la Salud/métodos , Disparidades en Atención de Salud , Adolescente , Niño , Trastornos Generalizados del Desarrollo Infantil/epidemiología , Continuidad de la Atención al Paciente/tendencias , Estudios Transversales , Femenino , Encuestas de Atención de la Salud/tendencias , Accesibilidad a los Servicios de Salud/tendencias , Disparidades en Atención de Salud/tendencias , Humanos , Masculino , Evaluación de Necesidades/tendenciasRESUMEN
OBJECTIVE: Evaluate the reliability and validity of the Medical Outcomes Study Short-Form version 2 (SF-12v2) in the 2003-2004 Medical Expenditure Panel Survey (MEPS). RESEARCH DESIGN: Data were collected in the self-administered mail-out questionnaire and face-to-face interviews of the MEPS (n = 20,661). Internal consistency and test-retest reliability and construct, discriminate, predictive and concurrent validity were tested. The EQ-5D, perceived health and mental health questions were used to test construct and discriminate validity. Self-reported work, physical and cognitive limits tested predictive validity and number of chronic conditions assessed concurrent validity. RESULTS: Both Mental Component Summary Scores (MCS) and Physical Component Summary Scores (PCS) were shown to have high internal consistency reliability (alpha > .80). PCS showed high test-retest reliability (ICC = .78) while MCS demonstrated moderate reliability (ICC = .60). PCS had high convergent validity for EQ-5D items (except self-care) and physical health status (r > .56). MCS demonstrated moderate convergent validity on EQ-5D and mental health items (r > .38). PCS distinguish between groups with different physical and work limitations. Similarly, MCS distinguished between groups with and without cognitive limitations. The MCS and PCS showed perfect dose response when variations in scores were examined by participant's chronic condition status. CONCLUSIONS: Both component scores showed adequate reliability and validity with the 2003-2004 MEPS and should be suitable for use in a variety of proposes within this database.