Pilot Test of the Maximizing Adolescent Post-Secondary Success (MAPSS) Intervention: Supporting Parents of Autistic Youth.

IMPORTANCE: Parents play an essential role in the transition to adulthood for autistic youth, yet often feel they do not have adequate training and resources. OBJECTIVE: To evaluate data on the preliminary efficacy of and collect participant feedback about the Maximizing Adolescent Post-Secondary Success (MAPSS) intervention. DESIGN: Single-group, pretest-posttest pilot study. SETTING: Clinic. PARTICIPANTS: Twenty-two families of autistic youth (ages 13-19 yr, 72.7% male). INTERVENTION: MAPSS is a group intervention for parent-youth dyads that is designed to guide parents in facilitating the development of independent skills for adulthood. Outcomes and Measures: Measures included the Transition Preparation Activities Measure (T-PAM), Family Empowerment Scale (FES), 10-item Perceived Stress Scale (PSS-10), Adulthood Expectations Questionnaire (AEQ), Adaptive Behavior Assessment System-Third Edition (ABAS-3), and a study-specific participant feedback survey. RESULTS: Frequency of transition preparation activities (T-PAM) significantly increased from before to after the intervention, and although the frequency of preparation activities decreased by 1-mo follow-up, it remained significantly higher than at baseline. Parent self-efficacy (FES), parent expectations (AEQ), and parent sense of control over outcomes (AEQ) also significantly increased from preintervention to follow-up; however, parent coping (PSS-10) was unchanged. Youth self-care skills (ABAS-3) demonstrated improvements 6 mo after the completion of the intervention, although other areas of adaptive behavior did not significantly change. Feedback from parents suggested they had positive experiences and felt the intervention was beneficial. CONCLUSIONS AND RELEVANCE: Our data suggest that the MAPSS intervention is an appropriate candidate for larger, controlled clinical trials. What This Article Adds: With additional evidence, this intervention can offer guidelines for occupational therapists to work with autistic youth and their parents to prepare for adulthood.

A Cross-Sectional Study of Caregiver Perceptions of Congenital Cytomegalovirus Infection: Knowledge and Attitudes about Screening.

OBJECTIVES: To understand caregiver knowledge of and attitudes toward congenital cytomegalovirus (cCMV) testing in Utah. STUDY DESIGN: We surveyed 365 caregivers whose children were being seen in an otolaryngology clinic at a tertiary pediatric hospital about their knowledge of and attitudes toward cCMV and cCMV screening. Descriptive statistics and cluster analysis were used to examine their responses. RESULTS: The majority of caregivers were unsure how cCMV was spread, the symptoms of cCMV, and why cCMV screening of infants was important. Most caregivers did not know that cCMV screening was required by law in Utah if an infant is referred after newborn hearing screening. A majority wanted to know if their child had cCMV even if asymptomatic and were willing to pay $20 for cCMV screening. Caregivers of children who had been tested for cCMV were significantly more likely to be strongly in favor of cCMV screening than expected by chance. Caregivers in the highly knowledgeable cluster were more likely to be strongly in favor of cCMV screening. CONCLUSIONS: Caregivers frequently were unaware of cCMV and its implications. Attitudes toward cCMV screening generally were positive. Education on epidemiology and impact of cCMV may benefit both prevention of infection and attitudes toward screening.

Modern slavery and labor exploitation during the COVID-19 pandemic: a conceptual model.

BACKGROUND: Modern slavery is a complex global health problem that includes forced labor exploitation. An ecological systems perspective is needed to understand how contextual upstream and midstream factors contribute to labor exploitation, and how disruptive societal challenges, such as infectious disease pandemics, may exacerbate established pathways leading to exploitation. Accumulation of familial and societal risk factors likely heightens vulnerability; for instance, economic precarity for an individual interacts with poor livelihood options and lack of social welfare supports increasing their likelihood of accepting exploitative labor. However, few frameworks exist that account for the accumulation of and interdependence between risk factors at different levels and across contexts. OBJECTIVE: Using an ecological systems framework, we review literature on the pathways leading to labor exploitation, with the aim of developing a conceptual model grounded in existing research. Next, we discuss how pathways in this conceptual model are likely exacerbated by the COVID-19 pandemic. This conceptual model can guide future research to detect modifiable factors and strategic points of intervention. METHODS: A critical review of research articles and gray literature was performed with a primary focus on sub-Saharan Africa. The review utilized various scholarly databases to identify perspectives from multiple disciplines and to more fully account for complex processes linked to labor exploitation. RESULTS: A conceptual model of these pathways was developed that emphasizes established determinants and risk factors for labor exploitation in sub-Saharan Africa. The model highlights how the COVID-19 pandemic may have exacerbated these pathways. CONCLUSIONS: Future studies should carefully examine the direct and indirect pathways, accumulation of and interactions between factors, and specific external and personal stressors. Interdisciplinary research on multilevel interventions is needed to guide solutions to prevent the persistent problem of labor exploitation.

Autistic Adolescents' and Their Parents' Visions for the Future: How Aligned are They?

Introduction: The expectations individuals hold about the future can influence the decisions they make toward achieving their goals. Existing research suggests parents of autistic adolescents hold expectations about the future that are significantly related to the postsecondary outcomes they achieve. However, less research exists about the adolescents' own expectations and the extent to which autistic adolescents and their parents agree about the future. Methods: We used a scoring procedure to "quantitize" semi-structured interview data about what 46 adolescent-parent dyads envisioned for the future of the autistic adolescent across three areas of adulthood (postsecondary education, employment, and living situation). Adolescents ranged in age from 13-19 years (85.1% male) and were able to participate in a verbal interview. We scored the dyads' interviews on the extent to which they agreed or disagreed about the postsecondary future of the adolescent, as well as whose expectations were higher (when they differed). Results: Proportions of agreement and disagreement did not significantly differ, demonstrating moderate agreement. Notably, fewer than half (37.0-47.8%) of adolescents and their parents partly or strongly agreed about their visions for the future in each of the three areas. Only 17.4% of dyads partly or strongly agreed across all three areas, and 23.9% did not agree in any area. When adolescents' and parents' views differed, adolescents were significantly more likely to have a higher expectation across all three areas (ps < 0.01). Conclusions: Future research is needed to examine differences in autistic adolescents' and parents' visions of the future, and to explore interventions to support families to work toward shared goals for the future. This study contributes to a growing body of literature emphasizing the importance of including the perspectives of autistic adolescents in research and for them to have an active and substantial role in their own transition planning.

Community reintegration needs following paediatric brain injury: perspectives of caregivers and service providers.

PURPOSE: To explore the processes of community reintegration of children and families at least one year following a paediatric brain injury from the perspective of caregivers and outpatient/community service providers. MATERIALS AND METHODS: A qualitative analysis of semi-structured interviews from outpatient or community service providers (N = 14; occupational, physical, and speech and language therapists, neuropsychologists, school counsellors, recreational providers) and caregivers of six children (N = 8) at least one year after their injury. Interviews were transcribed and thematically coded using deductive (employing Bronfenbrenner's ecological systems theory) and inductive approaches. RESULTS: Themes from both providers and caregivers indicated additional supports needed at all levels of Bronfenbrenner's ecological systems theory (i.e., individual, microsystem, mesosystem/exosystem, macrosystem, chronosystem). Participants felt that several characteristics would be needed in an ideal service system following paediatric brain injury including: community solutions ("it takes a village"), long-term approaches to care, and new financial approaches. CONCLUSIONS: The results suggest that children and families have substantial community reintegration needs following paediatric brain injury. Multi-system interventions are needed to support long-term community reintegration, especially those that increase communication and support transitions. There is also a strong need for alternative funding to support these efforts.Implications for RehabilitationFamilies with a child with a moderate to severe brain injury face challenges with community reintegration a year or more after their child's injury.Effort should be put into helping families navigate the complex medical, insurance, and school systems with a navigator service and step-down care to ensure a continuum of care and to support community reintegration.Special support should be provided during transitions, such as transitions from hospital care to outpatient care, and across school transitions.

Transition preparation activities among families of youth on the autism spectrum: Preliminary study using repeated assessments across a school year.

Much is still unknown about the transition to adulthood for youth with autism spectrum disorder (ASD), including what preparation activities best support positive adult outcomes. Parents play a crucial role in the transition planning and preparation process, yet the existing literature lacks detailed information about parent perceptions about transition preparation activities. To examine family transition preparation activities, we conducted a ten-month study of the transition preparation process of 15 families of youth with ASD across an academic year. Youth were ages 14-17 and 93% male. We collected data on transition preparation activity time spent and parent satisfaction over twenty data collection points. We used multi-level modeling to determine longitudinal trajectories of parent-reported preparation for the transition to adulthood based on endorsed transition preparation activities. Findings from this preliminary study revealed that discussions about the future were the most commonly endorsed activities, while social activities were most associated with increased parental perception of transition preparation over time. This study expands understanding of various transition preparation activities engaged in by families of youth with ASD during high school, though research with a larger and more diverse sample is needed to extend findings.

Dual perspectives in autism spectrum disorders and employment: Toward a better fit in the workplace.

BACKGROUND: Compared with people with other disabilities, individuals with autism spectrum disorder (ASD) have the lowest rates of employment and switch jobs at a higher frequency. Thus, understanding how to support workplace success for people with ASD is important. OBJECTIVE: Grounded in an ecological conceptual model, this study explores the dual employment perspectives of adults with ASD and supervisors who worked with individuals with ASD. METHODS: Using participatory research methods, a purposive sample of ten adults with ASD (all verbal with high school diplomas) and ten supervisors participated in semi-structured interviews on employment experiences. Qualitative analyses were used to identify themes. RESULTS: Four major themes emerged from an ecological framework to create a strong person-environment fit in the workplace: 1) building on interest/experiences/strengths/skills, 2) reducing social demands, 3) clear communication and expectations, and 4) ASD awareness for work environment. Comparisons between the two groups of participants showed substantive differences in expectations and accommodations. CONCLUSIONS: Supervisors, although eager to employ individuals with ASD, could benefit by employing an ecological model to successful employment. Results indicate that multiple lenses on the process of employment for those with ASD can lead to better outcomes in the workplace.

Outcomes From a Hearing-Targeted Cytomegalovirus Screening Program.

BACKGROUND AND OBJECTIVES: Cytomegalovirus (CMV) is the most common congenital infection and nongenetic cause of congenital sensorineural hearing loss in the United States. Utah was the first state to pass legislation mandating CMV screening for newborns who fail newborn hearing screening (NBHS). The study objective was to present outcomes of hearing-targeted CMV screening and determine factors predicting CMV screening. METHODS: We used Utah Department of Health HiTrack and Vital Records databases to examine CMV screening from 509 infants who failed NBHS in the 24 months after implementation of the Utah legislation. Multivariate logistic regression analyses were conducted to identify predictors of compliance with CMV screening and diagnostic hearing evaluation. RESULTS: Sixty-two percent of infants who never passed hearing screening underwent CMV screening. Fourteen of 234 infants tested within 21 days were CMV positive; 6 (42.9%) had hearing loss. Seventy-seven percent of eligible infants completed a diagnostic hearing evaluation within 90 days of birth. Compliance with CMV screening was associated with sociodemographic factors, time since the law was enacted, and NBHS protocol. Infants born after the legislation showed greater odds of achieving timely diagnostic hearing evaluation than infants born before the law. CONCLUSIONS: Incorporating CMV screening into an established NBHS program is a viable option for the identification of CMV in infants failing NBHS. The addition of CMV testing can help a NBHS program attain timely audiological diagnostics within 90 days, an important early hearing detection and intervention milestone.

Infants' Behavioral Strategies for Emotion Regulation With Fathers and Mothers: Associations With Emotional Expressions and Attachment Quality.

This study examined 12- and 13-month-old infants' behavioral strategies for emotion regulation, emotional expressions, regulatory styles, and attachment quality with fathers and mothers. Eighty-five infants participated in the Strange Situation procedure to assess attachment quality with mothers and fathers. Infants' behavioral strategies for emotion regulation were examined with each parent during a competing demands task. Emotion regulation styles were meaningfully related to infant-father attachment quality. Although expressions of distress and positive affect were not consistent across mothers and fathers, there was consistency in infant strategy use, emotion regulation style, and attachment quality with mothers and fathers. Furthermore, infants who were securely attached to both parents showed greater consistency in parent-oriented strategies than infants who were insecurely attached to one or both parents. Limitations of this study include the constrained laboratory setting, potential carryover effects, and a homogeneous, middle-class sample.

Grandparents of grandchildren with autism spectrum disorders (ASD): strengthening relationships through technology activities.

This study of grandparent-grandchild relationships was embedded in the context of technology workshops offered for young children on the autism spectrum. The purpose of this research was to examine the perspectives of six involved grandparents regarding their social interactions with their grandchildren in the context of this shared technology experience. Content analysis of transcribed focus group sessions with the grandparents indicated two key themes: expectations were reframed and communication bridges were built through shared interests. Grandparents perceived that their grandchildren learned technological skills, and increased their social interactions with peers, family members (parents, siblings), and grandparents themselves. The positive experience the grandparents perceived their grandchildren to have in the program gave them hope for future educational and employment opportunities for their grandchildren. The grandparents also indicated that the shared interests in the computer program facilitated communication opportunities with their grandchildren, with other grandparents of grandchildren with ASD, and with their adult sons and daughters.