Rebecca Goe

Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities

BACKGROUND Audio computer-assisted self-interviews (ACASIs) have safely and effectively obtained sensitive research data from the general public and have been recommended for use with people with disabilities. However, few studies have used ACASIs with people with disabilities and ACASIs have not been used to investigate the relationship between disability, interpersonal violence (IPV), and physical and psychological health among people with developmental disabilities (PWDD). OBJECTIVE We developed an accessible ACASI specifically designed to allow PWDD to answer questions independently, while privately and securely collecting anonymous data related to their disability, IPV experiences, and physical and psychological health. METHODS We used a safety protocol to apply community based participatory research (CBPR) principles and an iterative process to create, test, and administer a cross-sectional ACASI survey to 350 adults with developmental disabilities in urban and rural locales. RESULTS Most participants completed the ACASI independently and reported that its accessibility features allowed them to do so. Most also agreed that the ACASI was easy to use, its questions were easy to understand, and that they would prefer using an ACASI to answer IPV and health-related questions rather than in a face-to-face interview. The majority agreed that health and safety were critical issues to address. CONCLUSIONS ACASI technology has the potential to maximize the independent and private participation of PWDD in research on sensitive topics. We recommend further exploration into accessibility options for ACASI technology, including hardware and Internet applications.

Community-Based Participatory Research to Adapt Health Measures for Use by People With Developmental Disabilities.

Background: People with developmental disabilities (DD) are often not included as participants in research owing to a variety of ethical and practical challenges. One major challenge is that traditional measurement instruments may not be accessible to people with DD. Participatory research approaches promise to increase the participation of marginalized communities in research, but few partnerships have successfully used such approaches to conduct quantitative studies people with DD.Objective: To use a community-based participatory research (CBPR) approach to create an accessible, computer-assisted survey about violence and health in people with DD, and to psychometrically test adapted health instruments.Methods: Our academic–community partnership, composed of academic researchers, people with DD, and supporters, collaboratively selected and modified data collection instruments, conducted cognitive interviews and pilot tests, and then administered the full survey to 350 people with DD.Results: Although team members sometimes had opposing accommodation needs and adaptation recommendations, academic and community partners were able to work together successfully to adapt instruments to be accessible to participants with a wide range of DD. Results suggest the adapted health instruments had strong content validity and all but one had good to excellent internal consistency reliability (alpha, 0.81–0.94). The majority of participants (75%) responded that all or most of the questions were easy to understand.Conclusions: Researchers should consider using participatory approaches to adapting instruments so people with DD can be validly included in research.

Factors associated with consumer engagement and satisfaction with the Vocational Rehabilitation program

BACKGROUND: The Vocational Rehabilitation (VR) system spends approximately

Vocational Rehabilitation Agency Guidance on Social Media Use: A Policy Analysis:

365 million annually to serve consumers who disengage from services and drop out of the program. OBJECTIVE: Better understanding of the factors leading to premature exit might help VR better organize and deliver services to increase engagement. METHODS: VR consumers provided four waves of longitudinal data at six month intervals about their VR experiences and satisfaction. Almost half of the respondents felt that progression through VR services was too slow. Overall satisfaction with services was associated with the pace of service delivery, rates of contact between the counselor and consumer, and satisfaction with the counselor. Of those exiting the VR program over the study horizon (n = 162), 35% left because they met their goals, 34% because they were dissatisfied with services, and 30% for personal reasons. CONCLUSION: This study sets the stage for further evaluation and model testing of VR practices to reduce premature exit. Practice modifications might include changes to the rates, timing and structure of contacts between counselors and consumers. Even a nominal increase in consumer engagement and retention could have significant outcomes for the VR system and consumers.

Pilot Testing a Digital Career Literacy Training for Vocational Rehabilitation Professionals

Given vocational rehabilitation’s (VR) substantial role in workforce development, it follows that agencies would encourage and support consumers using the most current job-seeking methods, including social media. Recent data, however, show that online strategies are limited in VR practice and that many agencies lack comprehensive policies to guide social media use. We conducted a qualitative analysis to examine current VR social media policies and procedures and offer recommendations for policy development. Through an examination of open coding of 22 policies and one guideline, we identified seven themes and 25 subthemes, which mapped onto recommended social media policy elements from research. Only two VR policies, however, covered themes in a comprehensive way, and only one policy acknowledged social media as a tool for consumer job search. This outcome is an oversight given the emphasis social media plays in employment networking, proof of performance, and skills demonstration when seeking employment.

“I really want people to use our work to be safe”…Using participatory research to develop a safety intervention for adults with intellectual disability:

Digital career literacy encompasses the skills needed to find and maintain employment in the modern job market. Unfortunately, many state vocational rehabilitation (VR) professionals report feeling unprepared to help their consumers with digital career literacy tasks. To address this gap, we developed and tested five training webinars with VR professionals in Montana, Alabama, and Washington. We randomly assigned VR offices to intervention or control group. VR professionals in the intervention group received access to the training webinars. We collected survey data at baseline and 4 months after the intervention’s conclusion (n = 136). A repeated measures ANOVA showed significant group by factor effects in counselor preparedness to use online tools during the VR process (intervention group: M1 = 24.41, SD1 = 7.62; M2 = 28.76, SD2 = 7.27; control group: M1 = 25.94, SD1 = 8.64; M2 = 27.21, SD2 = 9.14); F(1, 124) = 5.957, p = .016. A McNemar nonparametric test indicated that more VR professionals in the intervention group reported using LinkedIn at the 4-month follow-up, as compared with the control group (p = .039). There were no significant changes in use of other online tools. This may relate to administrative policies that do not provide clear guidelines for using online tools in the counseling process.

A pilot test of the GoWoman weight management intervention for women with mobility impairments in the online virtual world of Second Life

People with intellectual disability experience disproportionately high rates of interpersonal violence (IPV) due, in part, to disability-related risks that often can be minimized through targeted intervention. In this article, we describe using an academic and community participatory research approach to develop and test the feasibility of an accessible IPV prevention program for people with intellectual disability. The Safety Class, which is an interactive, structured, eight-session, weekly face-to-face group program, was found feasible for implementation in an efficacy study. Working in partnership with the intellectual disability community through all phases of the project helps ensure the relevance, inclusion, and accessibility of The Safety Class.

Underrepresentation of adolescents with respiratory, mental health, and developmental disabilities using American Community Survey (ACS) questions

Abstract Objective: Pilot test GoWoman, a small-group weight management intervention for mobility impaired women that was a disability- and gender-responsive adaptation of the Diabetes Prevention Program delivered in the online virtual world of Second Life®. Objectives were to (1) examine pre-/post-intervention differences in weight, waist circumference, diet, physical activity, self-efficacy for diet and physical activity, nutrition knowledge and social support for weight management, (2) determine intervention feasibility (fidelity, attrition, engagement, acceptability). Design: Single-group modified interrupted time series quasi-experimental design whereby participants served as their own controls. Results: Thirteen women attended ≥8 of 16 GoWoman weekly sessions and lost an average of 5.97 pounds (2.71 kg) (3.31%) body weight (Cohen’s d = 0.74) and 1.44 inches (3.66 cm) (3.58%) waist circumference (Cohen’s d = 0.83). There were significant improvements in physical activity, diet and self-efficacy for diet and physical activity. All benchmarks for feasibility were met. Ratings of intervention content, group interactions and support and virtual world experiences were highly positive. Conclusion: Findings suggest that a disability- and gender-responsive weight management intervention with peer group support delivered in an online virtual world is feasible, meaningful and may assist with weight management for mobility impaired women. Implications for Rehabilitation This study addresses a gap in the general and rehabilitation research literature by addressing the disproportionately high rates of obesity among women with mobility impairments, who are generally excluded from tests of weight management interventions if they have limited ability to engage in vigorous physical activity. The GoWoman program is an adaptation of the Diabetes Prevention Program Lifestyle Change curriculum that is tailored to meet the unique weight management needs of women with mobility impairments, and was created to become a publicly available, disability- and gender-responsive intervention that can be used in community and rehabilitation settings. More rehabilitation and health promotion program should be offered in the free, online, virtual world of Second Life® since participants in this pilot study offered many favorable comments about the new learning and social opportunities available to them there and they did not have to deal with the disability-related environmental and health challenges that often prevent them from participating in face-to-face workshops. Preliminary indications of improvements in body weight, waist circumference, diet and physical activity after attending the GoWoman weight management intervention offered in Second Life® tell us that these strategies are feasible for helping women with mobility impairments manage their weight and should undergo further testing.