Creating academic-community partnerships to jointly enhance advocacy and research on violence and disability: Two case examples.

OBJECTIVE: This article describes the use of community-based participatory research (CBPR) to foster bidirectional and equitable academic-community partnerships in two studies related to interpersonal violence and disability. METHOD: We analyzed our methods and experiences in conducting these studies to focus on the ways in which CBPR methodology was used to jointly promote and enhance research and advocacy surrounding violence and disability in the research processes themselves and the resulting assessment and intervention products. RESULTS: Our use of CBPR methodology allowed us to identify and address critical issues related to violence in the disability community, such as disability-related forms and experiences of violence, concerns and barriers linked to mandated reporting laws, and inaccessible measures and interventions, and to address them in research products. Additionally, our bidirectional academic-community partnerships led us to address overall accessibility of the research process itself as a means by which to amplify advocate voices in science. CONCLUSIONS: Full, meaningful, and equitable participation of people with disabilities at every stage of the research process allows for the creation of partnerships that jointly advance research and advocacy around violence and disability. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Creating Accessible Survey Instruments for Use with Autistic Adults and People with Intellectual Disability: Lessons Learned and Recommendations.

Despite growing appreciation of the need for research on autism in adulthood, few survey instruments have been validated for use with autistic adults. We conducted an institutional ethnography of two related partnerships that used participatory approaches to conduct research in collaboration with autistic people and people with intellectual disability. In this article, we focus on lessons learned from adapting survey instruments for use in six separate studies. Community partners identified several common problems that made original instruments inaccessible. Examples included: (1) the use of difficult vocabulary, confusing terms, or figures of speech; (2) complex sentence structure, confusing grammar, or incomplete phrases; (3) imprecise response options; (4) variation in item response based on different contexts; (5) anxiety related to not being able to answer with full accuracy; (6) lack of items to fully capture the autism-specific aspects of a construct; and (7) ableist language or concepts. Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct. We caution against using instruments developed for other populations unless instruments are carefully tested with autistic adults, and we describe one possible approach to ensure that instruments are accessible to a wide range of autistic participants. LAY SUMMARY: Why is this topic important?: To understand what can improve the lives of autistic adults, researchers need to collect survey data directly from autistic adults. However, most survey instruments were made for the general population and may or may not work well for autistic adults.What is the purpose of this article?: To use lessons learned from our experience adapting surveys-in partnership with autistic adults-to create a set of recommendations for how researchers may adapt instruments to be accessible to autistic adults.What did the authors do?: Between 2006 and 2019, the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) and the Partnering with People with Developmental Disabilities to Address Violence Consortium used a participatory research approach to adapt many survey instruments for use in six separate studies. We reviewed records from these partnerships and identified important lessons.What is this recommended adaptation process like?: The adaptation process includes the following: (1) Co-creating collaboration guidelines and providing community partners with necessary background about terminology and processes used in survey research; (2) Collaboratively selecting which constructs to measure; (3) Discussing each construct so that we can have a shared understanding of what it means; (4) Identifying existing instruments for each construct; (5) Selecting among available instruments (or deciding that none are acceptable and that we need to create a new measure); (6) Assessing the necessary adaptations for each instrument; (7) Collaboratively modifying prefaces, items, or response options, as needed; (8) Adding "hotlink" definitions where necessary to clarify or provide examples of terms and constructs; (9) Creating new measures, when needed, in partnership with autistic adults;(10)Considering the appropriateness of creating proxy report versions of each adapted measure; and(11)Assessing the adapted instruments' psychometric properties.What were common concerns about existing instruments?: Partners often said that, if taking a survey that used the original instruments, they would experience confusion, frustration, anxiety, or anger. They repeatedly stated that, faced with such measures, they would offer unreliable answers, leave items blank, or just stop participating in the study. Common concerns included the use of difficult vocabulary, confusing terms, complex sentence structure, convoluted phrasings, figures of speech, or imprecise language. Partners struggled with response options that used vague terms. They also felt anxious if their answer might not be completely accurate or if their responses could vary in different situations. Often the surveys did not completely capture the intended idea. Sometimes, instruments used offensive language or ideas. And in some cases, there just were not any instruments to measure what they thought was important.What were common adaptations?: Common adaptations included: (1) adding prefaces to increase precision or explain context; (2) modifying items to simplify sentence structure; (3) substituting difficult vocabulary words, confusing terms, or figures of speech with more straightforward terms; (4) adding hotlinks that define problematic terms or offer examples or clarifications; (5) adding graphics to increase clarity of response options; and (6) adding new items related to autism-specific aspects of the construct.How will this article help autistic adults now or in the future?: We hope that this article encourages researchers to collaborate with autistic adults to create better survey instruments. That way, when researchers evaluate interventions and services, they can have the right tools to see if they are effective.

The relation of abuse to physical and psychological health in adults with developmental disabilities.

BACKGROUND: People with developmental disabilities are at disproportionately high risk of abuse. Although considerable evidence exists on the health-related consequences of abuse in the general population, little is known about those consequences in people with developmental disabilities. OBJECTIVE: To examine the relation of abuse with psychological and physical health outcomes in adults with developmental disabilities. METHODS: We used an accessible audio computer-assisted self-interview to collect anonymous data on demographic and disability characteristics, childhood and adult abuse experiences, and physical and psychological health from 350 women and men with developmental disabilities. Abuse experience was reflected by five factor scores consisting of three child abuse factors (childhood sexual abuse, childhood physical abuse, childhood disability-related abuse) and two adult abuse factors (adult sexual abuse, adult mixed abuse). We examined each of four health outcomes (depression, post trraumatic stress disorder, physical health symptoms, secondary health conditions) separately to determine the extent to which childhood and adult abuse experiences uniquely predicted psychological and physical health outcomes above and beyond demographic and disability-related characteristics. RESULTS: All five abuse factor scores were significantly related to all four health outcomes. When examined simultaneously, childhood disability-related abuse and adult mixed abuse accounted for unique variance in outcomes. Exploratory analyses revealed no difference in the impact of abuse by gender. CONCLUSIONS: In this study, childhood disability-related abuse and adult mixed abuse significantly predicted lower levels of psychological and physical health in a sample of adults with developmental disabilities. Our findings highlight the importance of addressing abuse and its sequalae in the developmental disabilities community.

Union Density and Hospital Outcomes.

The authors address the hospital outcomes of patient satisfaction, healthcare quality, and net income per bed. They define union density as the percentage of a hospital's employees who are in unions, healthcare quality as its 30-day acute myocardial infraction (AMI; heart attack) mortality rate, and patient satisfaction as its overall Hospital Consumer Assessment of Healthcare Providers and Systems score. Using a random sample of 84 union and 84 nonunion hospitals from across the United States, multiple regression analyses show that union density is negatively related to patient satisfaction. Union density is not related to healthcare quality as measured by the AMI mortality rate or to net income per bed. This implies that unions per se are not good or bad for hospitals. The authors suggest that it is better for hospital administrators to take a Balanced Scorecard approach and be concerned about employee satisfaction, patient satisfaction, healthcare quality, and net income.

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.

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.

Nursing home emancipation: A preliminary study of efforts by centers for independent living in urban and rural areas.

BACKGROUND: The U.S. Supreme Court's Olmstead decision affirmed the right of individual with disabilities to live in the community. Centers for independent living (CILs) and other disability advocacy organizations have initiated a wide range of efforts to emancipate (i.e., transition) adults with disabilities from undesired nursing home placements to community living. There is, however, a paucity of published information about the nursing home transition process for adults with disabilities. OBJECTIVE/HYPOTHESIS: The objectives of this research were to: (1) assess the levels of nursing home emancipation services and barriers to nursing home transitions, including the role of secondary health conditions, and (2) to assess nursing home transition policies and procedures. METHODS: We conducted 2 studies. First, we surveyed 165 CILs operating nursing home emancipation programs. Second, we reviewed the written transition policy and procedures documents of 28 CILs from 14 states. RESULTS: Respondents reported transitioning a total of 2,389 residents from nursing homes back to community living arrangements during the previous year, with only 4% of those returning to a nursing home for any reason. While most of the policies reflected many components of a standard model, several components appeared underrepresented. CONCLUSIONS: Findings suggest the need to expand on established programs to build evidence-based practices.