The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing.

BACKGROUND: Prenatal screening technology has consistently raised concerns regarding the conversations and information provided about disabilities, particularly given that research shows trauma related to negative prenatal screening and diagnosis experiences among parents of children with Down syndrome.1 OBJECTIVE: To determine what information obstetric medical providers (OB/MFMs) are most and least likely to provide when delivering prenatal screening/testing results about Down syndrome (DS), the subsequent impact of bias on prenatal screening experiences, and how these issues can be addressed through training, resources, and professional guidelines. METHODS: Online surveys were distributed to parents of children with DS born between 2016 and 2021 via local DS organizations and the national DS Diagnosis Network (April 2020-December 2021). RESULTS: Of the 242 parents who completed the survey, a majority indicated that OB/MFMs were most likely to discuss medical issues and reproductive options while less than 40% reported that OB/MFMs discussed psychosocial outcomes, supports, and services. Respondents reported that the 61.3% of OB/MFMs who delivered the diagnosis as bad news or said "I'm sorry" were significantly less likely than their counterparts to provide information about life outcomes, supports and services, condition-specific resources, or more comprehensive prenatal care. Qualitative responses about screening/diagnosis experiences provided further context about the impact of implicit and explicit bias on the provision of accurate, up-to-date information. CONCLUSION: To meet information needs during prenatal screening, OB/MFMs need access to accurate, balanced, and up-to-date information about disabilities and more training on disability cultural competency and how to deliver prenatal screening/testing results without implicit or explicit bias.

Promising Strategies for Teaching Augmentative and Alternative Communication in Inclusive Educational Settings: A Systematic Review.

PURPOSE: The purpose of this article was to conduct a systematic review of the literature on teaching or increasing the use of augmentative and alternative communication (AAC) by students with significant intellectual disabilities and complex communication needs (CCNs) within inclusive school settings. METHOD: A systematic review of research literature from 1998 to 2022 was completed using multiple electronic databases, as well as citation chaining and cited author reference searches. Three hundred two articles were located with 17 meeting criteria for inclusion in this systematic review. Articles were initially screened by one author for potential inclusion; the remaining 83 were coded by one author and reviewed for consensus by three authors for inclusion in this review. Articles were analyzed and rated regarding both level of research design and quality of methodology. RESULTS: All studies reported positive outcomes, with students with significant intellectual disabilities and CCN, of AAC intervention implemented in an inclusive setting. Fourteen over 17 studies were single-case designs with an average rating of 76% on the Single-Case Experimental Design measure of methodological quality. Less than half of the studies assessed generalization of subject learning. Review of interventions used in the studies, however, revealed the majority of studies utilized packages of interventions, making it difficult to determine the effectiveness of individual approaches. CONCLUSIONS: This systematic review indicates there are promising interventions within inclusive settings for improved use of AAC by students with significant intellectual disabilities and CCN. Further research is needed, however, to obtain more data on generalization of student gains as well as to determine which specific interventions might be the most successful for this population of students in inclusive settings.

Congregational Participation of a National Sample of Adults With Intellectual and Developmental Disabilities.

Supporting people with intellectual and developmental disabilities (IDD) to thrive requires careful consideration of multiple avenues of community involvement. Yet little attention has focused on the place of faith community participation in the lives of adults with IDD. We examined attendance at religious services using National Core Indicator data for a sample of 12,706 adults with IDD residing in 24 states. Almost half of adults (48.3%) reported attending a religious service in the past month, and more than one third (34.6%) attended 3 or more times. Religious involvement varied considerably based on a variety of individual (e.g., race, disability type, behavioral support needs, communication mode) and contextual factors (e.g., geographic locale, residential type). Moreover, monthly involvement in religious activities was much less common than participation in other community activities (i.e., exercise, entertainment, eating out, shopping). We offer recommendations for supporting the spiritual lives of adults with IDD, as well as highlight areas for future research and practice.

Effectively training pediatric residents to deliver diagnoses of Down syndrome.

Physicians and parents report a need for pediatricians to have additional training in delivering a diagnosis of Down syndrome (DS). This study tested a web-based tutorial to assess its effectiveness in improving physicians' perceived comfort with both ambiguous and more medically factual situations as they deliver diagnoses of DS. Based on this web tutorial that integrated prenatal and postnatal information into virtual patient scenarios, the study assessed pediatrics residents' knowledge and comfort in delivering a diagnosis of DS pre and postnatally. A separate survey, given at the same time, asked for residents' perception of their need for this training. Ninety-one volunteer residents from 10 pediatric training programs across the country participated. The tutorial yielded significant improvement in knowledge and a significant decrease in perceived level of discomfort in both ambiguous situations and more medically certain contexts related to a DS diagnosis. In addition, across all pediatric resident groups (by year, gender, and performance on the knowledge test and the comfort scale), residents strongly agreed that this type of training was beneficial for themselves, other residents, practicing physicians, and other medical professionals. This study suggests that web-based, interactive, multi-media training may be an effective tool for improving resident physician comfort with both ambiguous and more medically certain situations in delivering a diagnosis of DS to families.

Improving residents' understanding of issues, comfort levels, and patient needs regarding screening for and diagnosing Down syndrome.

OBJECTIVE: This study assessed obstetrics and gynecology and pediatrics residents' knowledge about Down syndrome (DS) and their comfort in delivering a prenatal or postnatal diagnosis of DS before and after interaction with a web-based tutorial. STUDY DESIGN: A team of physicians, parents, and educational specialists developed an interactive tutorial that asked resident physicians to provide their own responses to "virtual patient" cases related to DS diagnoses in utero and at birth. We tested resident knowledge and comfort-level changes and their satisfaction with the web-based tool. RESULTS: The study yielded significant improvement in knowledge and level of comfort changes with both obstetrics and gynecology and pediatric resident physicians at 16 programs nationally. There were no significant differences between the 2 specialties. CONCLUSION: This interactive tutorial is effective in improving physicians' knowledge of and comfort level with imparting accurate, balanced information about DS pre- and postnatally.

Virtual patient training to improve reproductive health care for women with intellectual disabilities.

A multimedia virtual patient module, involving the case of a young woman with mild intellectual disabilities with a complaint of diffuse abdominal pain, was developed as a clinical training tool for students in health care professions. Primary objectives following use of the module included improved knowledge and reduced perception of difficulty in treating women's health patients with intellectual disabilities. The module was developed using an iterative, collaborative process of a core development team that included medical professionals, multimedia specialists, the parent of a child with intellectual disability, and a disability advocate. Over the course of the module, students were required to identify appropriate and effective clinician-patient interactions in addition to relevant medical and developmental concerns for this patient population. Pilot data from a sample of nursing, physician assistant, and medical students suggest that the module is an effective tool for both improving students' knowledge and reducing their perception of difficulty in providing care to women's health patients with intellectual disabilities.

Virtual patient instruction for dental students: can it improve dental care access for persons with special needs?

An interactive, virtual-patient module was produced on compact disc (CD-ROM) in response to the critical need to increase dental students' clinical exposure to patients with developmental disabilities. A content development team consisting of dental faculty members, parents of children with developmental disabilities, an individual with a developmental disability, and educational specialists developed the interactive, virtual-patient module. The module focused on a young man with congenital deafblindness presenting as a new patient with a painful molar. Students were required to make decisions regarding clinical interactions throughout the module. Differences in both comfort and knowledge level were measured pre- and post-module completion, as well as the dental students' overall satisfaction with the learning experience. Significant results were obtained in students' perceived comfort and knowledge base. Participants reported overall satisfaction using the modules. This study demonstrated that an interactive, multi-media (CD-ROM), virtual patient learning module for dental students could be an effective tool in providing students needed clinical exposure to patients with developmental disabilities.

Developmental disabilities: improving competence in care using virtual patients.

Nurse practitioners (NPs) have an increasingly important role in health care provision in the United States. However, most nurses report that they receive little or no clinical training in the area of developmental disabilities. A core development team consisting of NP faculty members from three universities, one physician assistant faculty member, the parents of children with developmental disabilities, and educational specialists developed two multimedia interactive pediatric instructional modules in CD-ROM format: one involving a child with Down syndrome and the other, an infant born at 26 weeks gestation. Participants were required to make decisions about proper clinical interaction throughout the cases. The modules on CD were piloted with NP students at three universities. Effectiveness study results demonstrated significant gains in both knowledge and comfort level regarding the care of patients with developmental disabilities.

Videophone-delivered voice therapy: a comparative analysis of outcomes to traditional delivery for adults with Parkinson's disease.

Individuals with idiopathic Parkinson's disease (IPD) usually develop a speech disorder characterized by reduced loudness, hoarse and breathy voice, monotony of pitch, short rushes of speech, and imprecise consonants. The inability to effectively communicate impairs their ability to function in society and quality of life. A successful program developed to improve speech in these individuals is the Lee Silverman Voice Treatment (LSVT). A critical component of this treatment is intense daily therapy for 4 weeks, a regimen that is difficult for many elderly patients to complete. Treatment delivered through videophones placed in the homes of individuals with IPD offers an alternative and could improve accessibility of treatment if the results were the same. This study compared the outcomes of LSVT delivered via videophones to the outcomes of traditional treatment delivered face-to-face.

Caring for children with intellectual and developmental disabilities: virtual patient instruction improves students' knowledge and comfort level.

Nurses play a vital role in providing health care to children with developmental disability (DD) throughout the United States. Unfortunately, most nurses continue to report that they receive little or no clinical education in the area of DDs. In response to this need, a core development team consisting of nurse practitioners and nursing faculty from three universities, one physician assistant faculty, parents of children with DD, and educational specialists developed two multimedia (virtual patient) pediatric instructional modules in CD-ROM format--one involving a child with Down syndrome, and the other involving an infant born at 26 weeks' gestation. Participants were required to make clinical decisions throughout the cases. The modules on CD were piloted with nursing students from three universities. Results of the effectiveness study demonstrated significant gains in knowledge and comfort level regarding the care of children with DD.

Including students with moderate and severe intellectual disabilities in school extracurricular and community recreation activities.

We conducted an online statewide survey of teachers of students with moderate and severe intellectual disabilities to determine the extent to which their students were included in school extracurricular and community recreation activities. For the 252 teacher respondents who indicated that their primary caseload consisted of students with significant intellectual disabilities, we report the numbers of students participating in school and community activities and the primary type of support students required to participate in each activity. Finally, we identify implications for practitioners who want to increase the participation of students with significant disabilities in school and community activities.

Improving student dentist competencies and perception of difficulty in delivering care to children with developmental disabilities using a virtual patient module.

An interactive, multimedia, virtual patient module was designed and developed on compact disc (CD-ROM) to address the need for student dentists to increase their competence and decrease their perception of difficulty in caring for children with developmental disabilities. A development team consisting of pediatric dentistry faculty members, parents of children with developmental disabilities, an individual with a developmental disability, and educational specialists developed an interactive virtual patient case. The case involved a ten-year-old child with Down syndrome presenting with a painful tooth. Student dentists were required to make decisions regarding proper interactions with the child, as well as appropriate clinical procedures throughout the case. Differences in perceived difficulty level and knowledge change were measured, as well as the student dentists' overall satisfaction with the learning experience. Significant results were obtained in both perceived difficulty level and knowledge-based measures for student dentists. Participants reported overall satisfaction with the modules. Preparing student dentists to provide sensitive and competent care for children with developmental disabilities is a critical need within dentistry. This study demonstrated that an interactive, multimedia (CD-ROM), virtual patient learning module for student dentists is potentially an effective tool in meeting this need.

Resident physicians' competencies and attitudes in delivering a postnatal diagnosis of Down syndrome.

OBJECTIVE: This study responded to the need expressed by physicians and parents alike for improved medical information and support to families upon the initial diagnosis of Down syndrome at birth. The purpose was to assess obstetrics and gynecology and pediatrics residents' cognitive knowledge about Down syndrome and comfort in counseling parents with a newborn child with Down syndrome before and after intervention (resident viewing and interaction with the educational material). METHODS: A team of physicians, parents, and educational specialists developed an interactive CD-ROM that asked resident physicians to read and view virtual patient-doctor sessions, and provide their own responses to critical situations related to Down syndrome diagnoses. The research tested both knowledge and attitude change, as well as the effectiveness of an interactive CD-ROM as a pedagogical tool. RESULTS: Our effectiveness study yielded positive and significant improvement in knowledge and level of comfort changes with both obstetrics and gynecology and pediatric physicians in residence at the University of Kentucky. Residents also found the technologically based interactive type of instruction to be usable and valuable. CONCLUSION: Teaching physicians to impart accurate and balanced information about Down syndrome at the initial point of diagnosis can be achieved, in part, through training with the CD-ROM. From a broader perspective, this effectiveness study suggests the potential applications of these communication strategies not only to families who have a child with Down syndrome, but also to those with other life-altering disabilities. LEVEL OF EVIDENCE: II-3.