Pilot Trial of a Peer-to-Peer Psychoeducational Intervention for Parents of Black Children Awaiting a Developmental Evaluation.

OBJECTIVE: This study examined the short-term impact on child, family, and parent outcomes of a peer-to-peer psychoeducational intervention, Parents Taking Action (PTA) for Black families of children awaiting developmental-behavioral pediatric evaluations. METHODS: We targeted parents and other primary caregivers of Black children aged 8 years or younger awaiting a developmental or autism evaluation at an academic tertiary care hospital. Using a single-arm design, we recruited participants directly from the appointment waitlist and used flyers in local pediatric and subspecialty clinics. Eligible participants received a version of PTA adapted for Black children in two 6-week modules delivered synchronously online. In addition to initial baseline demographic data, we collected 4 standardized measures of parent stress and depression, family outcomes (e.g., advocacy), and child behavior at preintervention, midintervention, and postintervention. We calculated effect sizes and used linear mixed models to examine changes over time. RESULTS: Fifteen participants completed PTA, the majority of whom were Black mothers with annual household incomes <$50,000. All children were Black and mostly boys, with an average age of 4.6 years. Parent depression, the family outcome total score, and 3 family outcomes (understanding child's strengths, needs, and abilities; knowing rights and advocating for child; and helping child develop and learn) significantly improved pre-post intervention, with medium to large effect sizes. Furthermore, the family outcome total score and "knowing rights and advocating for child" outcome significantly increased by midintervention ( d = 0.62-0.80). CONCLUSION: Peer-delivered interventions can result in positive outcomes for families awaiting diagnostic evaluations. Further research is needed to confirm findings.

Diagnostic Process and Barriers Among Chinese-American and Korean-American Parents of Children with Autism.

OBJECTIVE: We sought to understand the experiences of Chinese-American and Korean-American parents of children with autism, including their initial concerns regarding their child's development, reported health professionals' responses to these concerns, diagnostic barriers, and factors associated with early autism diagnosis. METHOD: We designed a survey with support from an expert advisory group and Asian-American parents of children with autism. We measured 3 time points of diagnostic history, areas of parents' concerns, professionals' responses to their concerns, 15 types of diagnostic barriers, and professionals' helpfulness. We used descriptive and independent t tests to analyze data from 28 parents of children with autism. RESULTS: Most of the parents (86%) had early concerns about their children's developmental delays and expressed their concerns to health professionals. However, approximately 60% of the parents reported that the professionals did not conduct developmental screenings or make referrals to specialists. The most common diagnostic barrier was the stress of the diagnostic process, followed by navigating health care systems. Parents who required interpreters noted poor quality and unavailability. Early child developmental concerns were associated with early autism diagnoses. CONCLUSION: Although many Chinese-American and Korean-American parents had early concerns regarding their child's development and shared their concerns with health care professionals, parents encountered many barriers, including the stress of the diagnostic process. Chinese-American and Korean-American parents with limited English proficiency required additional support. Health care professionals' active listening and responses to parents' concerns can promote early diagnosis.

Brief Report: Impact of the COVID-19 Pandemic on Asian American Families with Children with Developmental Disabilities.

Discrimination against Asians and Asian Americans increased during the COVID-19 pandemic. Yet, even prior to the pandemic, little research explored the experiences of Asian American families of children with autism and other developmental disabilities. This brief report summarizes the results of a survey conducted between May and July 2020, in the immediate aftermath of state and local lockdowns due to the pandemic. Twenty-five Asian American caregivers of children with autism and other developmental disabilities completed the survey and reported on the pandemic's impact on their household. Most of the caregivers were mothers, immigrants, Chinese, raising children with autism, and highly educated. Participants' primary concerns were the disruption of their children's educational and therapeutic services. We discuss research limitations and implications.

Overview of Children and Disasters.

Currently, throughout the world, there are nearly 40 million children displaced by natural or man-made disasters. The special needs of children in disasters are often unrecognized, yet children comprise half of disaster victims. The purpose of this review is to provide information on (1) demographics related to children and disasters, both domestic and international; (2) risks for children who experience disasters; (3) programs that help children in disasters; and (4) training programs on the special needs of children in disasters. Children who are displaced by disasters are at risk of acute and long-term medical problems. Disaster experiences can also lead to acute and long-term psychological problems. Ultimately, these have worldwide negative implications for human society, including education, health care, security, and economic and political aspects of daily life. There is a compelling need for more services to help the children who have experienced disasters and for education to train more relief workers about the special needs of children in disasters.

Factors Influencing the Adequacy of Bowel Preparation in Patients With Developmental Disabilities.

BACKGROUND: The rate of inadequate bowel preparation in the general population is approximately 23%. As more individuals with developmental disabilities enter late adulthood, a concomitant rise in endoscopic procedures for this population, including screening colonoscopies, is anticipated. However, there are sparse data on the adequacy of bowel preparation in patients with developmental disabilities. METHODS: A retrospective analysis of 91 patients with developmental disabilities who underwent colonoscopy from 2006 to 2014 was performed. Bowel preparation adequacy from these procedures was evaluated, together with other data, including age, developmental disability diagnoses, procedure type, indication and setting. RESULTS: Mean age at the time of endoscopy was 52.6 ± 13.4 years, with an age range of 18 - 74 years. Inadequate bowel preparation was found in approximately 51% of documented cases. Outpatients were more likely to have adequate bowel preparation compared to inpatients, with an odds ratio of 2.75 (95% confidence interval: 1.14 - 6.62, P = 0.022). No other major factors identified had any statistically significant influence on the adequacy of bowel preparation. CONCLUSION: Over half of patients with developmental disabilities undergoing colonoscopy had inadequate bowel preparations in our study, which is more than twice the rate for the general population. Furthermore, outpatients were 2.75 times more likely to have adequate bowel preparation compared to inpatients. Further studies are recommended to improve endoscopic practices for this patient population.

Perceived Mentoring Practices in Developmental-Behavioral Pediatrics Fellowship Programs.

OBJECTIVE: Junior physicians describe mentoring relationships as integral to their career development and success. Current evidence suggests that mentoring is under-utilized despite interest from trainees. The purpose of this study is to describe the mentoring practices in developmental-behavioral pediatric (DBP) fellowship programs and identify mentoring needs of DBP fellows and recent graduates. METHODS: DBP fellows and recent graduates less than 5 years out of training from US-based DBP fellowship programs were contacted to complete a survey on their mentoring experiences in fellowship and early career. RESULTS: A total of 90 respondents completed the entire survey including 47 current DBP fellows and 43 recent graduates. Only 52% of respondents reported having a formal faculty mentor during their fellowship. Only 45% of recent graduates reported that they currently have a mentor, of those without a current mentor 83% said they would like to have a mentor. Adequate mentoring during fellowship was lowest for career development and research (34% and 27%). Satisfaction with mentoring was associated with having a formal mentor (p < .001) and receiving mentoring in multiple areas (p < .001). Qualitative responses suggested that effective mentoring addresses the mentee's career goals, provides insight into being a developmental-behavioral pediatrician, assists in navigating academics, and involves a personal relationship. CONCLUSION: Results suggest opportunities for improved mentoring in DBP fellowship programs, particularly in the areas of career development and research and that there is a significant need for mentorship among recent graduates. Findings from this study can inform program improvement in mentoring for DBP fellows and recent graduates.

Development and psychometric evaluation of a psychosocial quality-of-life questionnaire for individuals with autism and related developmental disorders.

This study investigated the psychometric properties of the Child and Family Quality of Life scale, a measure of psychosocial quality of life in those with autism and related developmental disorders. Parents of 212 children suspected of autism spectrum disorder completed the Child and Family Quality of Life prior to a diagnostic evaluation. Results indicated that the Child and Family Quality of Life measured six unique quality-of-life constructs (child, family/caregiver, financial, external support, partner relationship, and coping), had good reliability across score ranges and exhibited expected patterns of convergent validity. Caregivers of autism spectrum disorder-affected children reported reduced family quality of life prior to the time of diagnosis relative to caregivers of children with other developmental disabilities. The Child and Family Quality of Life is a brief, reliable measure for assessing psychosocial quality of life in families affected by developmental disability. This study is the first to demonstrate impairments in family quality of life early in the developmental course of autism spectrum disorder, prior to formal diagnosis. In addition to traditional child-focused intervention strategies, families with autism spectrum disorder-affected children require early, broad intervention strategies that positively impact the whole family.