Introduction to Transitions in the Life Course of Autism and Other Developmental Disabilities.

The Health Care Transitions Research Network for Autism Spectrum Disorder and other Developmental Disabilities and the Life Course Research Network, both funded by the Maternal and Child Health Bureau, invited articles for this Supplement. Our goal in this Supplement is to highlight and explore developmental and transition-related challenges over the life course of individuals on the autism spectrum and other neurodevelopmental disabilities, discuss the clinical and practice implications of these issues, highlight gaps in knowledge, and identify directions for future research.

Stakeholder Perspectives on Research and Practice in Autism and Transition.

OBJECTIVES: Individuals with autism spectrum disorder (ASD) are reported to experience significant challenges during the transition to adulthood. Although recent evidence indicates that individuals with ASD experience poor outcomes in adulthood, little is understood about the contributing factors. In this qualitative study, we investigated the barriers to and needs in research and practice in the transition to adulthood among individuals with ASD. METHODS: Thirteen researchers, including service providers, family members, and an individual with ASD participated in 30- to 60-minute, semistructured, open-ended telephone interviews. Interviews were transcribed, and data were analyzed by using an inductive approach to identify themes related to barriers to and needs in the transition to adulthood for youth with ASD. RESULTS: Stakeholders identified the need for transition planning and preparation to begin earlier and for systems to better accommodate the interests and varying abilities of individuals with ASD. Stakeholders also felt that parent and service provider expectations and perceptions influence early opportunities and experiences offered throughout the transition process. CONCLUSIONS: This study reveals the multilevel barriers to and needs in the transition to adulthood and the need for interagency and multidisciplinary collaboration and research to address the varying levels of needs, abilities, and multisector challenges.

Neurodevelopmental Profile, Growth, and Psychosocial Environment of Preterm Infants with Difficult Feeding Behavior at Age 2 Years.

OBJECTIVE: To examine the association of difficult feeding behaviors in very preterm infants at age 2 years with growth and neurodevelopmental outcomes and family factors and functioning. STUDY DESIGN: Eighty children born ≤30 weeks gestation were studied from birth until age 2 years. Feeding difficulties were assessed using the Eating Subscale of the Infant-Toddler Social Emotional Assessment at age 2 years, along with growth measurement and developmental testing. Maternal mental health and family factors were assessed using standardized questionnaires. ANOVA and χ(2) analyses were performed to determine associations between feeding difficulties and growth, neurodevelopmental outcomes, and family characteristics. RESULTS: Twenty-one children (26%) were at risk for feeding difficulties, and an additional 18 (23%) had definite feeding difficulties at age 2 years. Those with feeding difficulties were more likely to be subject to a range of neurodevelopmental problems, including impaired cognition (P = .02), language (P = .04), motor (P = .01), and socioemotional (P < .007) skills. Compared with the parents of children with fewer feeding difficulties, parents of the children with feeding difficulties had higher parenting stress (P = .02) and reported more difficulty managing their child's behavior (P = .002) and more frequent parent-child interaction problems (P = .002). No associations were found between difficult feeding behaviors and growth, maternal mental health, or family factors. CONCLUSION: Difficult feeding behaviors in children born very preterm appear to be highly comorbid with other developmental and family challenges, including neurodevelopmental impairment and parent-child interaction difficulties. Focusing on improving feeding skills, in conjunction with supporting positive parent-child interactions, may be beneficial for improving outcomes.

The effects of alternative positioning on preterm infants in the neonatal intensive care unit: a randomized clinical trial.

There is a paucity of studies that have investigated the developmental benefits of positioning in the neonatal intensive care unit. The purpose of this study was to investigate the effects of a new, alternative positioning device compared to traditional positioning methods used with preterm infants. In this randomized, blinded clinical trial, one hundred preterm infants (born ≤ 32 weeks gestation) from a level III neonatal intensive care unit in the United States were enrolled at birth. Participants were randomized to be positioned in the alternative positioning device or to traditional positioning methods for their length of stay in the neonatal intensive care unit. Infants were assessed using the NICU Network Neurobehavioral Scale between 35-40 weeks postmenstrual age. Clinical and feeding outcomes were also captured. Linear and logistic regressions were used to investigate differences in neurobehavioral outcome, feeding performance, and medical outcomes. Infants in the alternative positioning arm of the study demonstrated less asymmetry of reflex and motor responses on the NICU Network Neurobehavioral Scale (p=0.04; adjusted mean difference=0.90, 95% CI 0.05-1.75) than those positioned using traditional positioning methods. No other significant differences were observed. Reduction in asymmetry among preterm infants is an important benefit of alternative positioning, as symmetrical movement and responses are crucial for early development. However, it will be important to follow this sample of preterm infants to determine the effects of early positioning on neurodevelopmental outcome in childhood.

Neonatal nurses' and therapists' perceptions of positioning for preterm infants in the neonatal intensive care unit.

PURPOSE: Determine perceptions about positioning for preterm infants in the neonatal intensive care unit (NI CU). DESIGN: Twenty-item survey. SAMPLE: Neonatal nurses (n = 68) and speech, physical, and occupational therapists (n = 8). MAIN OUTCOME VARIABLE: Perceptions about positioning were obtained, and differences in perceptions between nurses and therapists were explored. RESULTS: Ninety-nine percent of respondents agreed that positioning is important for the well-being of the infant. Sixty-two percent of nurses and 86 percent of therapists identified the Dandle ROO as the ideal method of neonatal positioning. Forty-four percent of nurses and 57 percent of therapists reported that the Dandle ROO is the easiest positioning method to use in the NICU. Some perceptions differed: Therapists were more likely to report that the SleepSack does not hold the infant in good alignment. Nurses were more likely to report that the infant does not sleep well in traditional positioning.

Nursing Perceptions of Clinical Research in the Neonatal Intensive Care Unit.

PURPOSE: To determine perceptions of clinical research in the NICU. DESIGN: Survey study. SAMPLE: Nurses (n=68) employed in a level III NICU in the midwestern United States. MAIN OUTCOME VARIABLE: Cross-sectional analysis of responses to a survey exploring perceptions of clinical research. RESULTS: Ninety-seven percent of nurses (n=66) agree that clinical research is important for improving care, while 57% (n=39) report that it affects their day positively. Thirty-seven percent reported excellent communication between clinical and research teams. In addition, 27% (n=18) of nurses reported research presents complications for families, and 79% (n=54) reported that it is acceptable to cease a research protocol for infant benefit. Years of practice and whether nurses read research affected various responses. CONCLUSION: Clinical research is imperative to inform best practice, and nurses are an integral part of care. Therefore, it is essential to better define strategies to bridge the gap between clinical and research teams.