Parent Perceptions of Community Autism Spectrum Disorder Stigma: Measure Validation and Associations in a Multi-site Sample.

In this study we developed a brief, English/Spanish bilingual parent-reported scale of perceived community autism spectrum disorder (ASD) stigma and tested it in a multi-site sample of Latino and non-Latino white parents of children with ASD. Confirmatory factor analysis of the scale supported a single factor solution with 8 items showing good internal consistency. Regression modeling suggested that stigma score was associated with unmet ASD care needs but not therapy hours or therapy types. Child public insurance, parent nativity, number of children with ASD in the household, parent-reported ASD severity, and family structure, were associated with higher stigma score. The scale and the scale's associations with service use may be useful to those attempting to measure or reduce ASD stigma.

Maternal beliefs about autism: A link between intervention services and autism severity in White and Latino mothers.

Variation in parental beliefs about Autism Spectrum Disorder (ASD) may impact subsequent service use profiles. This study aimed to examine (1) variation in beliefs about ASD among English language proficient White (EP-W) mothers, English language proficient Latino (EPL) mothers, and limited English language proficient Latino (LEP-L) mothers of children with ASD; (2) variation in beliefs about ASD in the context of the child's ASD severity, among EP White mothers, EP Latino others, and LEP Latino mothers; and (3) potential links between maternal beliefs about ASD and children's current ASD treatment. This multi-site study included 305 English or Spanish-speaking parents of children with ASD, ages 2-10 years, who completed a survey about their beliefs about their child's ASD, their child's ASD severity, and treatments used by their children. Results showed that mothers in the EP-W, EP-L, and LEP-L groups differed in their beliefs about viewing ASD as a mystery. Only maternal views of ASD severity in the EP-W group were linked to their beliefs about ASD. Finally, maternal beliefs about ASD having major consequences on their child's life, and ASD being a mystery were strongly associated with a child's use of ASD intervention services. These findings provide new knowledge of how maternal beliefs about ASD vary in linguistically diverse groups, how a child's ASD severity may influence such beliefs, and how maternal beliefs correlate with the amount of therapy children with ASD receive. Future research should address how these beliefs or views are formed, what factors influence them, or whether they are malleable. Understanding parents' beliefs or views of having a child with ASD can potentially help us increase use of ASD intervention services in families of children with ASD.

Disparities in Diagnosis and Treatment of Autism in Latino and Non-Latino White Families.

OBJECTIVES: To compare barriers to autism spectrum disorder (ASD) diagnosis and current ASD-related service use among non-Latino white (NLW) families and Latino families with English proficiency (L-EP) or limited English proficiency (L-LEP). METHODS: We conducted a mixed-mode survey of families of children with confirmed ASD seen at specialty clinics in 3 United States cities. Bivariate and multivariate analyses compared barriers to ASD diagnosis, current service use, and unmet therapy need among NLW, L-EP, and L-LEP families. RESULTS: Overall, barriers to ASD diagnosis were prevalent: families (n = 352) experienced a mean of 8 of 15 barriers to ASD diagnosis. The most prevalent barriers overall were "stress of diagnostic process," "parent knowledge about ASD," and "understanding medical system." Compared with NLW families, L-LEP families were more likely to experience barriers related to knowledge about ASD and trust in providers. Children in L-LEP families also had fewer current therapy hours and more unmet therapy needs than children in NLW families. L-EP families' barriers and treatment services use profile was more similar to NLW than to L-LEP families. CONCLUSIONS: English proficiency was an important marker for barriers to ASD diagnosis and treatment in Latinos. Increasing ASD-related knowledge and provider trust may decrease disparities in the diagnosis and treatment of ASD among US Latinos.

Testing the Transition Preparation Training Program: Well-being of relationships outcomes.

PURPOSE: To determine the impact of the availability of everyday relationships and types of social support among adolescents with spina bifida on overall satisfaction/well-being of relationships and whether these adolescents differ in their ratings of relationships, social support and overall satisfaction, as measured by the My Family and Friends Scale: Teenage Version, social support scale after their participation in a health care transition intervention program, entitled the Transition Preparation Training Program. METHODS: A mixed design ANOVA was conducted. There were 31 eligible adolescents randomly assigned to the treatment group and 34 were assigned to the control group for a total sample size of 65 adolescents (investigator-blinded randomization). RESULTS: There were significant main effects for support type, relationship type, and for group. The mean overall satisfaction social support ratings for 31 adolescents in the treatment group slightly increased, pre (M = 38.63), post (M = 39.04), while the mean satisfaction social support ratings for those in the control group (34) did not change, pre (M = 39.95), post (M = 39.95). CONCLUSIONS: Relationship type and social support are important factors in overall satisfaction/well-being of relationships among adolescents with spina bifida. Discussing social networks, when preparing these adolescents for transition, may help promote evaluation of the types of support needed.

Brief Report: Adolescents' Reasons for Participating in a Health Care Transition Intervention Study.

PURPOSE: This study investigated the reasons adolescents with spina bifida consented or assented to participate in a randomized controlled prospective health care transition intervention study. METHODS: Sixty-five adolescents with spina bifida (SB), ages 14 to 18 years, who had previously participated in the Transition Preparation Training Program (TPT) study were recruited for the current study. A total of 26 consents/assents were obtained; a total of 25 questionnaires were returned (11 treatment; 14 control). Study findings were from a sample of 25 adolescents, aged 14 to 20 years who had participated in a randomized controlled prospective study entitled the Transition Preparation Training Program (TPT). Content analysis was used to code and analyze data. RESULTS: Study findings revealed adolescents indicated several reasons for choosing to participate in the research study. Major reasons cited for their participation were related to the desire to learn more about their condition and for altruistic purposes. Numerous reasons were offered by respondents as to why adolescents declined to participate in the research study; feelings of discomfort and issues of privacy were cited. Sixty-four percent of the respondents indicated the offer of a research incentive did not affect their decision to participate in the TPT study. Other findings are reported as to the use of research incentives and future recruitment recommendations. CONCLUSIONS: Youth shared a number of reasons and insights about recruitment strategies that may be helpful for future research efforts, especially those studies involving adolescents with special health care needs who participate in health care transition research.

Exploration of internet use: profile and preferences of transition-aged adolescents with spina bifida.

PURPOSE: A pilot study was conducted to learn about the Internet usage of adolescents with spina bifida. The purpose of this study is to investigate the feasibility for developing an online health care transition intervention. METHODS: Use of the Internet was examined in a convenience sample of 50 adolescents with spina bifida in the Spina Bifida Clinic at Children's Hospital, Los Angeles. Participants were between 14 to 18 years of age. Data are reported as percentages and frequency distributions. RESULTS: Ninety-two percent of adolescents with spina bifida used the Internet, and of those, 87% used it at home, with an average rate of 2.4 hours per dat. The majority of adolescents used the Internet for homework purposes (83%). Leisure activities, such as listening to music (76%), playing games (70%), meeting new friends/social networking (63%), and watching YouTube videos (61%), were also reported. Most participants have never used the Internet to obtain spina bifida information (67%) or to meet other adolescents with spina bifida (85%). CONCLUSION: Internet application as an outreach tool for education and transition planning should be further explored in future studies. Given the widespread reported access to the Internet among our participants, results suggest that a Web-based outreach tool for education and health care transition planning have the potential to be accessible and beneficial to adolescents with spina bifida with the facilitated support of health care professionals.

Urinary continence across the life course.

Spina bifida is the most common defect of the central nervous system. It is a congenital malformation of the spine with abnormal neural tube closure occurring between the third and fourth weeks of gestation, and most frequently affecting the lumbar and sacral regions. Most children with spina bifida have a normal urinary tract at birth, although renal damage and renal failure are among the most severe complications of spina bifida. Before ventricular shunting, survival rates for children with spina bifida were low, but most patients can now be expected to live into adulthood, thus prevention of urologic complications and promotion of continence have become critical. This article reviews the literature regarding urinary continence, and discusses issues across the lifespan, and implications for clinical practice and the pediatrician's role in the urologic care of children with spina bifida.

Testing the transition preparation training program: A randomized controlled trial.

The effectiveness of a cognitive-behavioral program, Transition Preparation Training (TPT), in combination with spina bifida (SB) management was compared to adolescents with SB who received only SB management. Design, setting and participants: Prospective controlled trial with an ethnically diverse sample (94%) of 65 adolescents with SB (31 in treatment group [mean age: 16.19]; 34 in control group [mean age: 15.71]) conducted at Childrens Hospital Los Angeles between September 2006 and September 2008. INTERVENTIONS: TPT was a three-module, eight sessions program offered in a 2 day workshop format to facilitate development of health care transition plan. MAIN OUTCOME MEASURES: Subjective well being as measured by the Personal Adjustment and Role Skills Scale (PARS III), Role mastery measured using Community Life Skills Scale (CLSS), and Self Care Practice with the Denyes Self-Care Practice Instrument (DSCPI-90©). RESULTS: No significant differences were found between groups of any treatment effect or treatment follow-up interaction. No substantial changes in the scores either between treatments of post treatments were found.