"Don't Promise Something You can't Deliver:" Caregivers' Advice for Improving Services to Adolescents and Young Adults with Autism.

Approximately 50,000 youths with autism spectrum disorders (ASD) exit U.S. high schools yearly to enter adult systems of care, many of whom remain dependent on family for day-to-day care and service system navigation. As part of a larger study, 174 family caregivers for adolescents or young adults with ASD were asked what advice they would give service providers about how to improve services for youth with ASD. Reflexive thematic analysis identified a framework of five directives: (1) provide a roadmap to services; (2) improve service access; (3) fill gaps to address unmet needs; (4) educate themselves, their families, and society about autism; and (5) operate from a relationship-building paradigm with families. Education, health, and social service providers, as well as policymakers, can use these directives to better assist youth with ASD and their families in the transition to adulthood.

Barriers to service and unmet need among autistic adolescents and young adults.

LAY ABSTRACT: Prior studies have described the roadblocks, or barriers, to needed services experienced by families with young autistic children, but less research has focused on those faced by autistic adolescents and young adults. In this study, we wished to understand the barriers to service experienced by autistic adolescents and young adults and their families. We surveyed 174 caregivers of autistic youth between 16 to 30 years old. We found that caregivers who felt more caregiving burden had more difficulty accessing services for their youth. Specifically, caregivers who felt more strongly that their daily lives had been disrupted, felt more financial strain, and worried more about their youth well-being experienced more roadblocks to getting services for the youth. Male caregivers also reported fewer difficulties related to service access. Importantly, the older the youth was when they had been diagnosed with autism, the more service barriers their caregivers reported. We did not see any differences in the level of barriers experienced by youth who lived in urban versus suburban settings, or between white and non-white families. However, when youth lived with their caregivers (rather than, for example, in a group home), fewer quality-related barriers to services were reported. Finally, greater access (but not quality) barriers were linked to youth having more unmet service needs. These findings can help to reduce the barriers to service experienced by autistic adolescents and young adults and their families.

"I got a little addiction": Adolescent and young adult cigarillo users' self-perceptions of addiction.

BACKGROUND: While prior research has informed how cigarette smokers understand and apply the term addiction, little is known about how this term is used by cigarillo smokers. This is an important area of study given the decline in cigarette use and increase in cigar product consumption. PURPOSE/OBJECTIVES: This paper examines how cigarillo smokers self-identify in terms of addiction and the association of this identification with tobacco use, quitting experiences, and level of nicotine dependence. METHODS: Transcripts from semi-structured interviews conducted in 2015-2016 with 57 participants (aged 14-28) about cigarillo use and beliefs were analyzed using a phenomenological approach to examine themes around addiction and cessation experiences. Analyses were limited to participants endorsing having a habit. Quantitative analyses were conducted to assess associations with demographics, tobacco use, addiction, cessation, and nicotine dependence for two groups: participants endorsing having an addiction to cigarillos and those who did not. RESULTS: All participants described the term addiction similarly. Participants with an addiction had significantly higher nicotine dependence and self-rating of addiction than those without an addiction. Although most quitting experiences did not differ between the two groups, participants who did not identify as addicted felt that they could quit smoking cigarillos at any time. CONCLUSIONS: Variations in identification with addiction are not associated with differences in definitions, use and quit experiences. Understanding self-perceptions of addiction can inform targeted communication to encourage cessation and the use of cessation resources.

Service Use Among Transition-Age Youth with Autism Spectrum Disorder.

This study explored predictors of service use among 174 transition-age youth (age 16-30) with an Autism Spectrum Disorder using Andersen's (J Health Soc Behav 36(1):1-10, 1995) healthcare utilization model. Family caregivers were interviewed about past 6-month use of 15 services. On average, youth used 6.1 and needed 3.2 additional services. Greater service use was associated with two predisposing (caregiver college educated, caregiver not married/partnered), two enabling (youth has Medicaid waiver, youth in high school), and one need factor (lower adaptive functioning). Use of specific services was most strongly related to enabling (Medicaid waiver, in high school) and need factors (lower adaptive functioning, comorbid mental health diagnosis). Findings provide a snapshot of the "service cliff" faced by families and highlight the need for additional research.

Patterns in Medicaid Coverage and Service Utilization Among People with Serious Mental Illnesses.

Disruptions in Medicaid adversely affect service use and outcomes among individuals with serious mental illnesses (SMI). A retrospective longitudinal study examined Medicaid coverage and service utilization patterns among individuals with SMI (N = 8358) from 2007 to 2010. Only 36% of participants were continuously enrolled in Medicaid and 20% experienced multiple enrollment disruptions. Mental health diagnosis did not predict continuous coverage; however, individuals with schizophrenia were 19% more likely to have multiple coverage disruptions than those with depression (b = - 0.21; p < 0.01). Single and multiple coverage disruptions were associated with decreased rates of outpatient service days utilized (IRR = 0.77 and 0.65, respectively, p < 0.001) and decreased odds of not using acute care services (OR  0.26 and 0.19, respectively, p < 0.001). Future research should explore mechanisms underlying Medicaid stability and develop interventions that facilitate insurance stability and service utilization.

Examining Criminogenic Risk Levels Among People with Mental Illness Incarcerated in US Jails and Prisons.

This study examines criminogenic risk levels of individuals with serious mental illness (SMI) involved in the justice system compared to justice-involved individuals without mental illness. The sample (N = 436) consisted of ninety-three individuals with SMI incarcerated in a county jail in a mid-size Midwest city, 217 individuals with SMI incarcerated in a state prison in the US Northeast, and 126 individuals without mental illness incarcerated in a state prison in the US Southwest. Results indicated that people with SMI incarcerated in jail and prison had higher overall criminal risk levels than prison inmates without mental illness. Results further demonstrated that, on average, higher percentages of persons with SMI had high/very high criminogenic risk scores. Finally, we noted that persons with SMI scored higher on most of the eight criminogenic risk domains measured by the Level of Service Inventory. These findings are possibly the most compelling to date in the growing body of literature demonstrating that justice-involved people with SMI have elevated criminogenic risk comparable to or greater than their non-mentally ill peers involved in the justice system. Consequently, treatment programs and interventions for justice-involved individuals with SMI need to explicitly target criminogenic needs into treatment efforts.

Cigarillo and multiple tobacco product use and nicotine dependence in adolescents and young adults.

INTRODUCTION: Multiple tobacco product (MTP) use is a growing public health concern, particularly among adolescents and young adults. This study identifies subgroups of MTP use among cigarillo users and examines associations with nicotine dependence (ND). METHODS: 1089 youth (ages 14-28) who currently smoke cigarillos completed a web-based survey regarding their current use of cigarillos, little cigars, traditional cigars, cigarettes, e-cigarettes, and waterpipe/hookah. Latent class analysis (LCA) was used to identify patterns of product use by type and amount. The LCA also assessed the relationship between the latent classes and a 38-item measure of ND, controlling for relevant demographics. RESULTS: Most participants (88.2%) reported using two or more tobacco products in the past 30 days. The best-fitting LCA solution revealed 7 classes: (1) Mixed-Light tipped cigarillo and light cigarette users, 28.9%; (2) Light tipped cigarillo users, 15.8%; (3) Light untipped cigarillo users, 14.3%; (4) Heavy tipped cigarillo users, 13.4%; (5) E-cigarette and waterpipe users, 11.9%; (6) Heavy users of tipped and untipped cigarillos and light users of cigarettes, 9.8%; and (7) Dabblers who primarily used traditional cigars, but were also likely to use a variety of other products, 6.1%. Classes comprised of those using multiple products-particularly those that included cigarettes-had significantly higher levels of ND than other classes (Tukey's HSD P < .05). CONCLUSIONS: Distinct patterns of MTP use are evident among young cigarillo smokers. Smoking multiple products, particularly smoking cigarillos in combination with cigarettes, is associated with higher ND compared to other product use patterns.

The Predictors of and Motivations for Increased Family Involvement in Nursing Homes.

BACKGROUND AND OBJECTIVES: Quantitative and qualitative data from a statewide survey of family members of nursing home residents were analyzed to determine the predictors of, and motivations for, family involvement. RESEARCH DESIGN AND METHODS: We examined 3 types of involvement: visiting, providing personal care, and family-staff communication. Our mixed methods approach used (a) multilevel regression models to examine predictors of family involvement, including family member perceptions and resident, family member, and facility characteristics, and (b) a thematic analysis of qualitative data regarding the experiences of family members and their motivations for involvement. RESULTS: Families were more involved when a short-term stay (<3 months) was expected, and when residents were in poorer physical condition. Spouses and female family members were more involved than others, yet the effect of gender varied by relationship type. At the facility level, families of residents in rural facilities reported less family involvement. Aside from these commonalities, predictors of each type of involvement varied. Themes from the qualitative data identify unique motivations for each type of involvement-to enhance residents' identity, care, or quality of life. DISCUSSION: Families visit more and provide more hands-on assistance when they are not confident in the care being provided or the well-being and stability of their resident loved one. Receiving adequate information, perceiving staff as friendly, and residents as looking well cared for promote greater family-staff communication. IMPLICATIONS: Findings can inform strategies to increase meaningful family involvement in nursing homes.

A comparison of methods to measure daily cigarillo consumption among adolescents and young adults.

OBJECTIVE: Cigarillo use is widespread among young people. Accurate assessment of cigarillo consumption is necessary to inform and evaluate tobacco research, but is complicated by product sharing and irregular use. This study compares a conventional approach with a detailed approach for measuring cigarillo consumption. METHODS: Data are drawn from a cross-sectional, web-based survey of 1089 young (aged 15-28 years) cigarillo smokers. The conventional measure of cigarillo consumption employs two common tobacco use items-the number of days a product was smoked in the past month and the average number of products smoked per day. The detailed measure uses a time line follow-back procedure to assess product use on each of the past 7 days, both in a group and alone. Paired t-tests compare daily cigarillo use estimates from the two methods overall, and are stratified by sample characteristics and behaviours; associations with multiple factors are examined simultaneously using linear regression. RESULTS: Compared with the conventional measure, the detailed measure yields significantly higher daily consumption estimates for moderate and high-level users and for non-daily tobacco users, and significantly lower estimates for those who always share products and daily tobacco users. Differences remain after controlling for demographics and product use behaviours. There are no differences by gender, age, race or multiple product use. CONCLUSIONS: The two measurement methods yield significantly different consumption estimates based on sharing behaviour, regularity of use and use level. Improving accuracy in the measurement of tobacco product consumption is important and timely for tobacco control research and policy.

Family Involvement in the Nursing Home and Perceived Resident Quality of Life.

Purpose of Study: This study focuses on the relationship between family involvement and family perceptions of nursing home residents' quality of life (QOL). Design and Methods: Resident and family variables from the 2012 Ohio Family Satisfaction Survey were merged with facility information from the Certification and Survey Enhanced Reports (CASPER). Hierarchical linear modeling was used to examine the association between family involvement and other predictors with perceived resident QOL. Results: Although most of the variability in family member perceptions of resident QOL was observed at the individual level (residents and families), characteristics of the facilities were also significantly associated with perceived resident QOL. Family involvement was a strong predictor of perceived resident QOL: Families who visited frequently and provided more help with personal care perceived lower resident QOL, while those who communicated frequently with facility staff had higher perceptions of resident QOL. Interestingly, the negative association between helping with more personal care and perceiving lower resident QOL was attenuated when family members communicated more regularly with facility staff. However, as family member age increased, the positive association between communication with facility staff and resident QOL diminished. Family members who are spouses, older, non-White, and highly educated perceived resident QOL as lower. Implications: Meaningful family involvement is a modifiable factor that can potentially enhance resident QOL. Facilities can become more family-oriented through encouraging communication between staff and families, helping spouses and other family members fulfill their desired caregiving role, and discussing the family's motivations for providing personal care during visits.

Criminal thinking styles among people with serious mental illness in jail.

The purpose of this study was to extend the investigation of criminal thinking of persons with mental illness beyond prison and community settings to a jail setting. Participants consisted of 122 individuals incarcerated in a county jail who were diagnosed with a severe mental illness, including schizophrenia spectrum and major mood disorders. Results indicated that people with mental illness in this sample of jail inmates presented with thinking styles that support a criminal lifestyle, and have criminal thinking styles that follow a pattern that is very similar to a sample of prison inmates with serious mental illness. These findings support the need for therapeutic programs for justice-involved persons with serious mental illness to develop a multipronged treatment approach that integrates interventions for individuals' criminal thinking and antisocial attitudes with treatment for their mental illness and substance abuse issues.

Levels, types, and predictors of family caregiver strain during hospice home care for an older adult.

Academic researchers and professionals from a hospice organization collaborated to assess physical, emotional, social, economic, and spiritual strain stemming from providing care to a terminally ill older relative among 162 family caregivers to older adults newly admitted to hospice home care. The study investigated predictors of the different types of strain, as well as cumulative strain. Hierarchical multiple regressions revealed that caregivers' age and race, hospice patients' major illnesses (particularly cancer), caregivers' appraisals of their situation, and resources were significant risk or protective factors for caregiver strain, although the predictors varied by type of strain and amount of strain. Discussion focuses on the importance of identifying family caregivers at risk of higher strain during hospice home care and implications for family caregiver interventions.

Health and well-being in older married female cancer survivors.

OBJECTIVES: To investigate differences between older married female cancer survivors and a matched comparison sample on physical health and on effects of health on depressive symptomatology. DESIGN AND SETTING: National survey data from the 1992 Health and Retirement Study. PARTICIPANTS: Married women who reported having been diagnosed with cancer (N=245) and married women who did not report a cancer diagnosis but who matched the survivors on age, race, and ethnicity (N=245). MEASUREMENTS: Outcome measure was depressive symptomatology (modified CES-D). Predictors were multiple indicators of health and demographic characteristics. RESULTS: Cancer survivors reported significantly worse health on all indicators but not higher depressive symptomatology after health and demographics were controlled. Predictors of higher depression were fatigue, pain, and lower education. These effects did not differ between groups. CONCLUSION: Health impairment in cancer survivors highlights the need for ongoing follow-up care. Survivorship was associated indirectly with higher depressive symptomatology through its relationship with health impairment.

The FACES Project: an academic-community partnership to improve end-of-life care for families.

This article reports on a research partnership between a community-based hospice and a graduate school of social work. The purpose of the collaboration was to design and test a tool for assessing caregiver strain and resources in families caring for older adults receiving hospice home care services. Eighteen hospice home care social workers interviewed 162 caregivers for the study and provided their own assessment of the tool's clinical utility. Both strengths and challenges of the collaboration are evaluated and implications are discussed for social work practice and research, particularly academic-community research partnerships.

The rural elderly assessment project: a model for interdisciplinary team training.

SUMMARY The Rural Elderly Assessment Project (REAP) was designed to train occupational therapy, physical therapy, physician assistant, and public health faculty and students to conduct interdisciplinary team health assessments with rural, community-dwelling older adults. This article highlights key features of the project's design and implementation and presents preliminary evaluation data from the 25 students who participated in the project. Students completed several pre- and post-test measures. Statistically significant improvements were observed in all but one of the knowledge, skill, and attitude domains that were specifically targeted by the project. Students identified a variety of benefits they received from participating in the project, and all students indicated that they would recommend the project to another student. Implications for project replication and interdisciplinary team training of allied health students are discussed.