Development and content validity of the Person Experiences Interview Survey (PEIS): a measure of the mental health services experiences of people with developmental disabilities.

Purpose: People with developmental disabilities and mental health service experiences have a right to be included in healthcare decisions, including the evaluation of their mental health services and providers. However, few self-report measures address this need. This study aimed to fill this gap by developing and evaluating the content validity, including comprehension, relevance, and comprehensiveness, of the Person Experiences Interview Survey (PEIS) with people with developmental disabilities and mental health experiences. Methods: The research team established a measurement framework based on the Family Experiences Interview Survey (FEIS), resulting in 21 PEIS items that were written in collaboration with young adults with developmental disabilities and mental health service experiences. Comprehension, relevance, and comprehensiveness were evaluated through cognitive interviews with people with developmental disabilities and mental health service experiences (respondents; n = 9) ages 23-49 years. Comprehensiveness and relevance were also evaluated in focus groups with family caregivers (n = 9) and mental health providers (n = 10) who serve this population. Two researchers independently coded open-ended responses to the PEIS for comprehension. A content validity index (CVI), indicating relevance, was calculated for each participant group for each item, and comprehensiveness was rated for item sets. Results: Fifteen of the 21 items met the criteria of ≥80% comprehension, with 89-100% of responses containing all or some intended information. All items met the CVI ≥80% criterion in at least two of the three groups. In all item sets, between 1 and 4 family members or providers felt one question was missing. Respondents used the response scale in a manner that corresponded with their open-ended descriptions, and family caregivers and providers had positive feedback about the response scale's visual cues and number of choices. Using these findings, four items were removed and six items were revised, resulting in a 17-item measure. Conclusion: This study presents a novel and promising measure, the Person Experiences Interview Survey (PEIS). It also demonstrates that the employment of accessible methods allows people with developmental disabilities to meaningfully evaluate mental health services and providers. The PEIS shows great promise for application in the field by engaging those directly involved in the evaluation of mental health services and providers.

Self-Report Measurement of Well-Being in Autistic Adults: Psychometric Properties of the PERMA Profiler.

Background: Studies of positive psychology and emotional well-being have broadened our understanding of mental health. However, mental health research involving autistic adults has been largely deficit-focused. Few studies have examined well-being using established positive psychological frameworks. Methods: This study examined the psychometric characteristics of the PERMA Profiler, a 23-item questionnaire that measures well-being across five subscales (Positive emotion, Engagement, Relationships, Meaning, and Accomplishment), in a sample of 517 autistic adults ages 18-84 years (M = 39.5, standard deviation [SD] = 13.3). Reliability (internal consistency), structural validity (via confirmatory factor analysis including bifactor modeling), and concurrent validity were examined. Results: The PERMA Profiler mean (SD) well-being score was 5.4 (SD = 1.7), which is notably lower than the mean of 7.0 previously found in nonautistic samples. Subscale scores were highest for Engagement (M = 6.8; SD = 1.9), followed by Accomplishment (M = 5.6; SD = 2.2), Relationships (M = 5.2; SD = 2.6), Meaning (M = 5.2; SD = 2.7), and Positive emotion (M = 5.0; SD = 2.4). Factor analyses revealed strong psychometrics (Cronbach's α = 0.93; Comparative Fit Index = 0.94; Tucker-Lewis Index = 0.97; root mean square error of approximation = 0.08; standardized root mean residual = 0.05) and superior fit of the bifactor model, supporting a general factor for conceptualizing well-being as opposed to a five-factor model. PERMA well-being and subscale scores were significantly correlated (p < 0.001) with mental health conditions and life satisfaction. Conclusion: These findings support use of an adapted version of the PERMA Profiler in mental health research to evaluate well-being among autistic adults. Similar to studies with nonautistic populations, the Engagement measure may not capture the experiences of the autistic population and further refinement is needed. Follow-up research should represent a more diverse autistic population, collaborate with autistic coinvestigators, and explore potential correlates of well-being (such as social stigma) while using the PERMA Profiler.

Why is this an important issue?: "Well-being" captures a state of comfort, health, and happiness and is more than just the absence of disease or negative feelings. Only a few studies to date have focused on the emotional well-being of autistic adults. The positive psychology-based PERMA Profiler (named after the five subscales: Positive emotions, Engagement, Relationships, Meaning, and Accomplishment) is a brief self-report measure for rating well-being using 23 questions. It has been widely used for studying well-being in nonautistic populations. However, no studies have tested how well the PERMA Profiler measures well-being among autistic adults. What was the purpose of this study?: The goal was to evaluate the PERMA Profiler using data from a group of autistic adults living in the United States. This was the first study that tested how well the PERMA Profiler measures the well-being of autistic adults, both overall and across the five subscales. What did the researchers do?: First, we collected responses to the PERMA Profiler and other questions from more than 500 autistic adults. Then, we tested whether the PERMA Profiler measures well-being consistently and if the measure performs as expected (i.e., did it measure what it is supposed to measure?). We also compared well-being scores with the mental health (anxiety and depression) and life satisfaction of the study participants. What were the results of the study?: The average overall well-being score was 5.4 out of 10, with higher values indicating experiencing well-being more often. Notably, the average well-being score was 7.0 in unrelated, previous studies of nonautistic adults). The PERMA Profiler measured well-being consistently in our sample. The overall well-being scores and each of the five subscale scores were related to mental health and life satisfaction as expected. The "Engagement" subscale did not perform as well as the others in our sample, which was consistent with the findings of studies with nonautistic adults. What do these findings add to what was already known?: This is the first study to evaluate the effectiveness of the PERMA Profile or any measure of self-reported well-being in a sample of autistic adults. These results can help future researchers determine how best to study well-being, specifically in autistic adults. These findings point to important changes that might be made to the PERMA Profiler before it is used in future research. What are potential weaknesses in the study?: Autistic adults were not involved in the development of the PERMA Profiler. Therefore, the measure may need to be changed by teams involving autistic coinvestigators before use with other samples. Second, our findings may not represent larger, more diverse groups of autistic adults because most participants were White (85%), well-educated (more than 80% completed at least some college), and did not have intellectual disability. Lastly, the study was conducted during the COVID-19 pandemic, which likely impacted the well-being of participants. How will these findings help autistic adults now or in the future?: Our study provides preliminary support for the PERMA Profiler and suggests next steps for improving it and other measures of well-being before expanding use with autistic adults. Our findings may help the field of autism research develop new measures for understanding and improving well-being. The strengths and weaknesses of the PERMA Profiler that we identified can inform future strengths-based research involving autistic adults.

Evaluation of telemental health services for people with intellectual and developmental disabilities: protocol for a randomized non-inferiority trial.

BACKGROUND: Roughly 40% of those with intellectual/developmental disabilities (IDD) have mental health needs, twice the national average. Unfortunately, outpatient mental health services are often inaccessible, increasing reliance on hospital-based services. While telemental health services hold potential to address this gap, little is known about the effectiveness of telemental health for the diversity of persons with IDD, especially as it relates to crisis prevention and intervention services. Accordingly, the aims of this study are to: (1) compare telemental health versus in-person crisis prevention and intervention services among people with IDD; and (2) understand if outcomes vary across subpopulations, in order to identify potential disparities. METHODS: This study will take place within START (Systemic, Therapeutic, Assessment, Resources, and Treatment), a national evidence-based model of mental health crisis prevention and intervention for people with IDD. A total of 500 youth and adults, located across nine states, will be randomized 1:1 to telemental health vs. in-person. Participant inclusion criteria are ages 12-45 years, living in a family setting, and newly enrolled (within 90 days) to START. Outcomes will be assessed, using a non-inferiority design, for up to 1 year or until discharge. The intervention is comprised of four components: (1) outreach; (2) consultation/coping skills; (3) intake/assessment; and, (4) 24-hour crisis response. The in-person condition will deliver all components in-person. The telemental health condition will deliver components 1 & 2, via telephonic or other communication technology, and components 3 & 4 in-person. Outcomes include mental health crisis contacts, mental health symptoms, emergency psychiatric service use, perceived quality of mental healthcare, and time to discharge. DISCUSSION: To our knowledge, this will be the first trial of a telemental health crisis program for the IDD population. The study will be executed by an interdisciplinary team of experts that includes persons with lived experience of disability. Understanding the benefits of specific telemental health methods has important implications to the design of interventions. This telemental health study offers promise to address disparities in access to mental health care for people with IDD across diverse racial, ethnic, linguistic, and cultural groups. TRIAL REGISTRATION: Clinicaltrials.gov ( #NCT05336955 ; Registration Date: 4/20/2022).

Telehealth information and communication technology access for family caregivers of people with intellectual and developmental disabilities and mental health needs.

BACKGROUND: Telehealth is increasingly used to deliver mental health services. However, the potential benefits of telehealth for people with intellectual and developmental disabilities and mental health needs (IDD-MH) may not be fully realized. This study addresses gaps in knowledge about access to information and communication technologies (ICTs) for individuals with IDD-MH from the perspective of their family caregivers. OBJECTIVE: What factors are associated with access to ICTs among family caregivers of people with IDD-MH who use START services? METHODS: Retrospective analysis of cross-sectional interview data gathered for START use at the onset of COVID-19. START is a crisis prevention and intervention evidence-based model for people with IDD-MH implemented across the USA. To assess needs during COVID-19, START coordinators conducted interviews with 1455 family caregivers between March and July 2020. A multinomial regression model examined correlates of ICT access, as indicated by an index (poor, limited, and optimal access). Correlates included the level of IDD, age, gender, race, ethnicity, rural setting of the person with IDD-MH, and caregiver status. RESULTS: Age (ages 23-30 years) and sole caregiver status were significantly associated with limited access (both p ≤ .001). Age (ages 23-30 years and ≥31 years, p < .001), race (Black or African American, p = .001), ethnicity (Hispanic, p = .004), and sole caregiver status (p < .001) were significantly associated with poor access. CONCLUSIONS: Disparities existed in ICT access for adults, specific racial/ethnic groups, and sole caregiver households. Healthcare policy related to telehealth must consider how ICT access can be equitable for all users with IDD-MH.

Psychiatric Presentations and Medication Use in Older Adults With Intellectual and Developmental Disabilities.

OBJECTIVE: Adults with intellectual and developmental disabilities (IDD) are living longer, yet research about the medical and psychiatric needs of older adults still lags behind that of younger individuals with IDD. The aim of this study was to assess age-related differences in the mental health presentations of adults with IDD. METHODS: Fully deidentified data for adults 30 years and older were extracted from the START (Systemic, Therapeutic, Assessment, Resources, and Treatment) Information Reporting System, a deidentified database housed at the Center for START Services. Caregivers and START team documents reported psychiatric diagnoses, service use, recent stressors, and challenging behaviors. t Tests, Mann Whitney U tests, χ2 tests, and multinominal logistic regression models were used to compare the two age groups, 30-49 years (n = 1,188) versus 50 years and older (n = 464). RESULTS: Older adults had more medical conditions, fewer reported psychiatric conditions, and were more likely to be taking more psychiatric medications compared to younger adults, after adjusting for demographic variables, disability level, and number of recent stressors. CONCLUSION: Although older individuals reported fewer psychiatric diagnoses, they were more likely to take higher numbers of psychiatric medications and have more medical conditions. Clinicians and researchers ought to devote more attention to the healthcare needs of older adults with IDD, a vulnerable group exposed to polypharmacy and at risk of adverse events.

Psychotropic Use Among Youths With Intellectual and Developmental Disabilities.

OBJECTIVE: The authors examined the prevalence and correlates of psychotropic medication prescribing among outpatient youths with intellectual and developmental disabilities. METHODS: The authors reviewed cross-sectional data on medications for 1,333 youths (ages 5-21 years) with intellectual and developmental disabilities who were referred to a community-based mental health crisis service. Descriptive statistics and regression analysis were used to describe the study group and to identify correlates of psychotropic polypharmacy, antipsychotic use, and anticonvulsant use in the absence of a seizure disorder. RESULTS: Most youths were taking psychotropic medications (N=1,139, 86%), often three or more medications (N=733, 55%) from two or more drug classes (N=919, 69%). Most youths received antipsychotics (N=863, 65%), and a third (N=432, 32%) were taking anticonvulsants in the absence of a seizure disorder. Greater severity (number of psychiatric diagnoses and recent psychiatric hospitalization), older age, and living in a group home were significantly correlated with these practices. CONCLUSIONS: Polypharmacy, antipsychotic use, and anticonvulsant use in the absence of seizure disorders were common among youths with intellectual and developmental disabilities referred to the crisis service. Older age, number of psychiatric diagnoses, living in a group home, and psychiatric hospitalization correlate with these prescribing practices. These elevated prescribing rates in a very vulnerable population warrant further study.

Predictors of Mental Health Crises Among Individuals With Intellectual and Developmental Disabilities Enrolled in the START Program.

OBJECTIVE: Individuals with intellectual and developmental disabilities disproportionately use emergency psychiatric services compared with their neurotypical peers, suggesting that such individuals and their supports are at increased risk for crisis events. This prospective study examined the timing, outcomes, and predictors of mental health crises for this population. METHODS: The data came from Systemic, Therapeutic, Assessment, Resources, and Treatment (START), a national model that provides mental health crisis services for those with intellectual and developmental disabilities in the United States. The study included 1,188 individuals from four U.S. regions enrolled between 2018 and 2019. The outcome was urgent crisis contacts with the START program. Baseline and clinical predictors were examined with multivariate regression analyses. RESULTS: More than a quarter had at least one crisis contact, and 9% had three or more. Contacts increased within the initial 3 months of START enrollment, followed by a steep drop-off thereafter; few contacts happened after 1 year. Almost 45% of the contacts occurred after hours, and 30% involved police. Clinical factors predicted crisis contact most robustly, followed by lack of occupational supports. After START crisis intervention, 73% of individuals remained in their primary setting. CONCLUSIONS: For individuals with intellectual and developmental disabilities and mental health needs, crisis stabilization resources are needed, including after hours. Results clearly identify times and risk factors for mental health crisis contacts, including frequent involvement with emergency responders. Importantly, gainful employment conveyed benefits for community stabilization. Findings may be leveraged to develop effective mental health crisis intervention services and supports for this underserved group.

Experiences With the Mental Health Service System of Family Caregivers of Individuals With an Intellectual/Developmental Disability Referred to START.

People with intellectual and developmental disabilities (IDD) frequently have behavioral or mental health needs, but experience obstacles to treatment. Family caregivers are often responsible for coordinating the care of individuals with IDD. This study examined family caregiver experiences using intake data from a national tertiary crisis intervention model designed for people with IDD and mental health needs. Caregivers (n = 488) completed the Family Experiences Interview Schedule. Less than half of families reported satisfaction with the mental health services received. Notable gaps were in crisis, night and weekend services, choice of services and providers, communication and coordination between providers, and specialized training. Experiences were worse for caregiving fathers and individuals with IDD with co-occurring chronic medical conditions.