Delays in autism diagnosis for U.S. Spanish-speaking families: The contribution of appointment availability.

Promoting equity in health services requires an understanding of the mechanisms that produce disparities. Utilizing a sequential, mixed-methods, explanatory study design, we analyzed child-, family-, and organizational-level factors and their association with wait times for an ASD diagnostic evaluation among 353 families scheduled for English and Spanish language appointments (27% Spanish language). A subset of parents and caregivers participated in English and Spanish language focus groups to provide their perspectives on the diagnostic process. Spanish language was associated with greater completion of, and time to evaluations than English language. The only variable found to mediate associations with time-to-evaluation was appointment availability - an organizational factor. Qualitative results elucidate potential explanations for greater Spanish language evaluation completion (e.g., fewer community-based diagnostic options). Results serve as a case study to support the utility and importance of analyzing the influence of organizational-level factors on delays and disparities for childhood health and mental health services. We discuss our findings in relation to strategies that can be widely applied to support equitable services access for childhood diagnostic and intervention services.

A national survey on adaptations by perinatal psychiatry access programs to promote perinatal mental healthcare equity.

OBJECTIVE: Perinatal Psychiatry Access Programs ("Access Programs") are system-level interventions that aim to build the capacity of perinatal healthcare professionals to address mental health, and thereby improve access to perinatal mental healthcare. Access Programs are widely implemented and positioned to promote health equity in perinatal mental healthcare, but little is known about the adaptations being made to the model in response to calls to promote health equity. METHODS: One respondent from each of the 14 Access Programs (n = 14) completed an online survey that queried on adaptations made to promote perinatal mental healthcare equity. RESULTS: Twelve of the 14 Access Program team members (86%) indicated implementation of at least one new equity initiative. The average number of initiatives that a single Access Program implemented was 3.5 (range 0-10). Two Access Programs (14%) implemented 8.5 initiatives (range: 7-10), indicating that a small cohort is leading promotion of equity among Access Programs. CONCLUSION: Efforts to further expand the capacity and services of Access Programs to address perinatal mental healthcare inequities are needed. These adaptations may provide a robust opportunity for implementation initiatives to promote health equity through a system-level intervention.

A Taxonomy of Reported Harms in Pediatric Autism Spectrum Disorder Screening: Provider and Parent Perspectives.

The U.S. Preventive Services Task Force (USPSTF) report on screening for Autism Spectrum Disorder (ASD) highlighted the need for research that examines the harms potentially associated with screening so as to assess the overall net benefit of universal screening. In response, this study engages qualitative, semi-structured interviews to generate a taxonomy outlining potential harms reported by parents and providers (pediatricians and Early Intervention providers) with experience in screening young children for ASD. Potential harms emerged including: physical, psychological, social, logistical/financial, opportunity cost, attrition, and exacerbation of non-targeted disparities. Respondents reported harms being experienced by the toddlers, parents, and providers. The harms reported highlight opportunities for providers to offer resources that mitigate the potential for these unintended consequences.

Understanding How Parents Make Meaning of Their Child's Behaviors During Screening for Autism Spectrum Disorders: A Longitudinal Qualitative Investigation.

A family's journey in understanding their child's behaviors in relation to Autism Spectrum Disorders (ASD) frequently begins with screening. This study aimed to characterize the interpretive processes that unfold for parents. We employed longitudinal interviews with 19 families engaged in a community-based multi-stage screening protocol. Parents participated in 1-6 interviews dependent upon children's length of engagement in the screening protocol; data were analyzed through modified grounded theory. Parents who moved towards understanding their child's behaviors as ASD expressed (1) sensitization to ASD symptoms, (2) differentiation from other developmental conditions, and (3) use of the ASD diagnosis to explain the etiology of concerning behaviors. Identifying interpretive processes involved during ASD screening provides new opportunities for shared decision-making.

Multi-method process maps: An interdisciplinary approach to investigate ad hoc modifications in protocol-driven interventions.

INTRODUCTION: Implementation scientists increasingly recognize that the process of implementation is dynamic, leading to ad hoc modifications that may challenge fidelity in protocol-driven interventions. However, limited attention to ad hoc modifications impairs investigators' ability to develop evidence-based hypotheses about how such modifications may impact intervention effectiveness and cost. We propose a multi-method process map methodology to facilitate the systematic data collection necessary to characterize ad hoc modifications that may impact primary intervention outcomes. METHODS: We employ process maps (drawn from systems science), as well as focus groups and semi-structured interviews (drawn from social sciences) to investigate ad hoc modifications. Focus groups are conducted with the protocol's developers and/or planners (the implementation team) to characterize the protocol "as envisioned," while interviews conducted with frontline administrators characterize the process "as realized in practice." Process maps with both samples are used to identify when modifications occurred across a protocol-driven intervention. A case study investigating a multistage screening protocol for autism spectrum disorders (ASD) is presented to illustrate application and utility of the multi-method process maps. RESULTS: In this case study, frontline administrators reported ad hoc modifications that potentially influenced the primary study outcome (e.g., time to ASD diagnosis). Ad hoc modifications occurred to accommodate (1) whether providers and/or parents were concerned about ASD, (2) perceptions of parental readiness to discuss ASD, and (3) perceptions of family service delivery needs and priorities. CONCLUSION: Investigation of ad hoc modifications on primary outcomes offers new opportunities to develop empirically based adaptive interventions. Routine reporting standards are critical to provide full transparency when studying ad hoc modifications.