Consent for Research Involving Spanish- and English-Speaking Latinx Adults With Schizophrenia.

BACKGROUND: Latinxs are vastly underrepresented in mental health research; one of many contributing factors may be complexities in the research consent process, including language preferences. We examined determinants of comprehension of research consent procedures and tested the effects of a preconsent research schema condition among 180 adults with schizophrenia (60 Latinx-English and 60 Latinx-Spanish preference, and 60 non-Latinx White). STUDY DESIGN: Participants were randomly assigned (equal allocation) to an educational session regarding clinical research concepts and processes (schema condition) or to an attention control. Following a subsequent simulated consent procedure for a hypothetical drug trail, comprehension of consent disclosures was measured with 2 standard measures. STUDY RESULTS: One-way ANOVAs showed significant medium effect size differences between ethnicity/language groups on both measures of comprehension (η2s = 0.066-0.070). The Latinx-Spanish group showed lower comprehension than non-Latinx White participants; differences between the 2 Latinx groups did not reach statistical significance. Group differences were not statistically significant after adjusting for differences in education, or on scores from structured measures of acculturation, health literacy, or research literacy. Two-way ANOVAs showed no significant main effects for consent procedure on either comprehension measure (Ps > .369; partial η2s < 0.006) and no significant group-by-consent interactions (Ps > .554; partial η2s < 0.008). CONCLUSIONS: Although the preconsent procedure was not effective, the results suggest health and research literacy may be targets for reducing disparities in consent comprehension. The onus is on researchers to improve communication of consent information as an important step to addressing health care disparities.

Challenges and facilitators of hospice decision-making: a retrospective review of family caregivers of home hospice patients in a rural US-Mexico border region-a qualitative study.

OBJECTIVES: Hospice care (HC) is seen as a comprehensive approach, that enhances quality of end-of-life (EOL) care, for terminally ill patients. Despite its positive aspects, HC enrolment is disproportionate for rural patients, who are less likely to use HC in comparison to their urban counterparts. The purpose of this study was to explore decision-making experiences, related to utilisation of HC programmes from a retrospective perspective, with family caregivers (FCGs) in a rural US-Mexico border region. DESIGN: This qualitative study was conducted from May 2017 to January 2018 using semistructured face to face interviews with FCGs. Data were analysed using thematic analysis. SETTING: The HC programme was situated at a local home health agency, located in rural Southern California, USA. PARTICIPANTS: Twenty-eight informal FCGs of patients who were actively enrolled in the HC programme agreed to participate in the study. RESULTS: Conversation about HC as an option was initiated by home healthcare staff (39.3%), followed by physicians (32.1%). Emerging themes related to challenges in utilisation of HC and decision-making included: (1) communication barriers; (2) lack of knowledge/misperception about HC; (3) emotional difficulties, including fear of losing their patient, doubt and uncertainty about the decision, denial and (4) patients are not ready for HC. Facilitators included: (1) patient's known EOL wishes; (2) FCG-physician EOL communication; (3) the patient's deteriorating health and (4) home as the place for death. CONCLUSIONS: HC patients' FCGs in this rural region reported a lack of knowledge or misunderstanding of HC. It is recommended that healthcare providers need to actively engage family members in patient's EOL care planning. Optimal transition to an HC programme can be facilitated when FCGs are informed and have a clear understanding about patients' medical status along with information about HC.

End-of-Life Communication Between Providers and Family Caregivers of Home Hospice Patients in a Rural US-Mexico Border Community: Caregivers' Retrospective Perspectives.

INTRODUCTION: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition. METHODS: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data. RESULTS: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care. CONCLUSION: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.

Disclosing psychiatric diagnosis to close others: a cultural framework based on older Latin@s participating in a depression trial in Los Angeles county.

Objectives: The objective of this qualitative study is to explore disclosure of depression diagnosis to close others among older adult Latinas/Latinos (Latin@s) recruited from an urban health care system specializing in low-cost community health services in Los Angeles County. Method: Semi-structured in-depth interviews were conducted with 35 older Latinos who participated in an NIMH-funded randomized depression trial. Results: Psychiatric disclosure is a dynamic, multidimensional, and culturally ladened experience that entails weighing in on interrelated factors. This study presents a cultural framework of depression disclosure that highlights 15 facilitators and barriers which were organized into three intrinsic and relational domains: (a) individual emotional and support needs; (b) personal characteristics of the recipient of the disclosure; and (c) quality of the interpersonal interactions between the patient and recipient. Conclusion: Knowledge of Latin@ older adults' perspectives and experiences with depression disclosure can inform strategies to support older Latin@s facing the dilemma of disclosure.

Re-Engagement into Care: The Role of Social Support on Service Use for Recurrent Episodes of Mental Health Distress Among Primary Care Patients.

Given high rates of relapse of depression, understanding mechanisms that provide long-term benefits and optimal outcomes for depressed individuals is crucial. The current study examines social support as a relevant component in service use to manage mental health needs for individuals with recurrent depression over a 5-year period. Conducting a secondary data analysis from a randomized clinical trial titled Partners in Care, the study examines direct and moderating effects over two time points of reported 12-month social support on service use for mental health needs at 57-months for an adult sample (n = 991). Direct effects were supported for demographic and need variables. Increased social support at 12-months positively moderated the relationship between health impairment and service use at 57-months. Findings inform and extend the understanding of social support as an important mechanism to care to integrate into the treatment experience, encouraging service use to manage recurrent depressive episodes.

A Mixed Methods Approach to Network Data Collection.

There is a growing interest in examining network processes with a mix of qualitative and quantitative network data. Research has consistently shown that free recall name generators entail recall bias and result in missing data that affects the quality of social network data. This study describes a mixed methods approach for collecting social network data, combining a free recall name generator in the context of an online survey with network relations data coded from transcripts of semi-structured qualitative interviews. The combined network provides substantially more information about the network space, both quantitatively and qualitatively. While network density was relatively stable across networks generated from different data collection methodologies, there were noticeable differences in centrality and component structure across networks. The approach presented here involved limited participant burden and generated more complete data than either technique alone could provide. We make suggestions for further development of this method.

Inter-organizational collaboration in the implementation of evidence-based practices among public agencies serving abused and neglected youth.

This study examined the role of inter-organizational collaboration in implementing new evidence-based practices for addressing problem behaviors in at-risk youth. Semi-structured interviews were conducted with 38 systems leaders of probation, mental health, and child welfare departments of 12 California counties participating in a large randomized controlled trial to scale-up the use of Multidimensional Treatment Foster Care. Three sets of collaboration characteristics were identified: (1) characteristics of collaboration process, (2) characteristics of the external environment, and (3) characteristics of participating organizations and individuals. Inter-organizational collaboration enables an exchange of information and advice and a pooling of resources individual agencies may require for successful implementation.

Depression interventions among racial and ethnic minority older adults: a systematic review across 20 years.

While there is strong evidence in support of geriatric depression treatments, much less is available with regard to older U.S. racial and ethnic minorities. The objectives of this review are to identify and appraise depression treatment studies tested with samples of U.S. racial and ethnic minority older adults. We include an appraisal of sociocultural adaptations made to the depression treatments in studies meeting our final criteria. Systematic search methods were utilized to identify research published between 1990 and 2010 that describe depression treatment outcomes for older adults by racial/ethnic group, or for samples of older adults who are primarily (i.e., >50%) racial/ethnic minorities. Twenty-three unduplicated articles included older adults and seven met all inclusion criteria. Favorable depression treatment effects were observed for older minorities across five studies that took place in different types of settings and with varying levels of sociocultural adaptations. The effectiveness of depression care remains mixed, although collaborative or integrated care shows promise for African Americans and Latinos. The degree to which the findings generalize to non-English-speaking, low acculturated, and low-income older persons, and to other older minority groups (i.e., Asian and Pacific Islanders, and American Indian and Alaska Natives), remains unclear. Given the high disease burden among older minorities with depression, it is imperative to provide timely, accessible, and effective depression treatments. Increasing their participation in behavioral health research should be a national priority.

Social networks and implementation of evidence-based practices in public youth-serving systems: a mixed-methods study.

BACKGROUND: The present study examines the structure and operation of social networks of information and advice and their role in making decisions as to whether to adopt new evidence-based practices (EBPs) among agency directors and other program professionals in 12 California counties participating in a large randomized controlled trial. METHODS: Interviews were conducted with 38 directors, assistant directors, and program managers of county probation, mental health, and child welfare departments. Grounded-theory analytic methods were used to identify themes related to EBP adoption and network influences. A web-based survey collected additional quantitative information on members of information and advice networks of study participants. A mixed-methods approach to data analysis was used to create a sociometric data set (n = 176) for examination of associations between advice seeking and network structure. RESULTS: Systems leaders develop and maintain networks of information and advice based on roles, responsibility, geography, and friendship ties. Networks expose leaders to information about EBPs and opportunities to adopt EBPs; they also influence decisions to adopt EBPs. Individuals in counties at the same stage of implementation accounted for 83% of all network ties. Networks in counties that decided not to implement a specific EBP had no extra-county ties. Implementation of EBPs at the two-year follow-up was associated with the size of county, urban versus rural counties, and in-degree centrality. Collaboration was viewed as critical to implementing EBPs, especially in small, rural counties where agencies have limited resources on their own. CONCLUSIONS: Successful implementation of EBPs requires consideration and utilization of existing social networks of high-status systems leaders that often cut across service organizations and their geographic jurisdictions. TRIAL REGISTRATION: NCT00880126.

Adherence to antipsychotics among Latinos and Asians with schizophrenia and limited English proficiency.

OBJECTIVES: The authors examined data for 7,784 Latino, Asian, and non-Latino white Medi-Cal beneficiaries with schizophrenia to determine the relationship between patients' preferred language for mental health services--English, Spanish, or an Asian language--and their adherence to treatment with antipsychotic medications. METHODS: Data reflected 31,560 person-years from 1999 to 2004. Pharmacy records were analyzed to assess medication adherence by use of the medication possession ratio (MPR). Clients were defined as nonadherent (MPR<.5), partially adherent (MPR=.5-<.8), or adherent (MPR=.8-1.1) or as an excess filler of prescriptions (MPR<1.1). Regression models were used to examine adherence, hospitalization, and costs by race-ethnicity and language status. RESULTS: Latinos with limited English proficiency were more likely than English-proficient Latinos to be medication adherent (41% versus 36%; p<.001) and less likely to be excess fillers (15% versus 20%; p<.001). Asians with limited English proficiency were less likely than English-proficient Asians to be adherent (40% versus 45%; p=.034), more likely to be nonadherent (29% versus 22%; p<.001), and less likely to be excess fillers (13% versus 17%; p=.004). When analyses controlled for adherence and comorbidities, clients with limited English proficiency had lower rates of hospitalization and lower health care costs than English-proficient and white clients. CONCLUSIONS: Adherence to antipsychotic medications varied by English proficiency among and within ethnic groups. Policies supporting the training of bilingual and multicultural providers from ethnic minority groups and interventions that capitalize on patients' existing social support networks may improve adherence to treatment in linguistically diverse populations.

Access to public mental health services among older adults with severe mental illness.

OBJECTIVE: Limited data are available on how older adults access public mental health systems. This study examines how uninsured or publicly insured older adults with severe mental illness in San Diego County initially accessed the public mental health system, as well as their subsequent use of public mental health services, as compared to younger adults. METHODS: Data from San Diego County, 2002-2006, were used to examine how older adults initially accessed the public mental health system, and their utilization over the subsequent 90 days. Multivariate regression models were used to control for demographic and clinical characteristics. RESULTS: Older adults (age 60 +) were more likely to access the public mental health system through the Psychiatric Emergency Response Team (PERT), a combined law-enforcement and psychiatric service that responds to psychiatric related 911 calls. Older adults were also less likely to receive follow-up care. This lower rate of follow-up was due to both the initial site of service--and an associated lower rate of follow-up among PERT clients--as well as a lower rate of follow-up among older adult clients initiating services in other sectors. CONCLUSIONS: This paper suggests two areas for intervention that would improve access to care for older adults: improving linkages and referrals between PERT and outpatient providers; and additional efforts to retain older adults at outpatient programs.

Unmet needs for mental health services for latino older adults: perspectives from consumers, family members, advocates, and service providers.

This study qualitatively assessed the need for mental health services among Latino older adults in San Diego, California. The primary mental health issue was depression. Primary organizational barriers to accessing services were language and cultural barriers secondary to a lack of translators, dearth of information on available services, and scarcity of providers representative of the Latino community. Other challenges included a lack of transportation and housing, and the need for socialization and social support. Latino older adults experienced their unmet needs in ways associated with their cultural background and minority status. Age- and culturally-appropriate services are needed to overcome these barriers.

Initiation and use of public mental health services by persons with severe mental illness and limited english proficiency.

OBJECTIVE: Few studies have examined the effect of limited English proficiency on use of mental health services by persons with mental illness from ethnic minority groups who are uninsured or publicly insured. This study examined how indigent or publicly insured Latino and Asian adults with limited English proficiency initially accessed the public mental health system and how their use of services changed over time compared with English-proficient peers. METHODS: Data from San Diego County for fiscal years 2000-2005 were used to examine point of first contact and use of inpatient, emergency, and outpatient services in the 18 subsequent months among 9,243 clients with a psychiatric diagnosis of schizophrenia, bipolar disorder, or major depression. Multivariate regression models were used to compute standardized estimates of utilization. RESULTS: Latino and Asian clients with limited English proficiency were significantly less likely to first access the system through emergency services and more likely to access the system through outpatient services (p<.001 for each comparison). In two outpatient programs that were focused on delivering services to clients with limited English proficiency, clients had a higher intensity of outpatient service use than clients in clinics that did not have such a focus (p<.05 for each). CONCLUSIONS: The initial pattern of service use was favorable for both groups. However, over time this pattern persisted for Asian clients with limited English proficiency but not for Latino clients with limited English proficiency. Findings suggest that ethnically focused programs may be an effective approach to engaging populations that are underrepresented in the mental health system.

Unmet needs for services for older adults with mental illness: comparison of views of different stakeholder groups.

OBJECTIVE: The authors assessed the need for mental health services among older adults in San Diego County, California, by determining what needs were not being addressed by existing services, what services were necessary to address these needs, and how much consensus there was among different stakeholders with respect to the problems and solutions related to service delivery. METHODS: Semistructured interviews were conducted with 23 health care and social service providers and administrators, 16 services consumers and other older adults (55 years of age and older), and 19 caregivers/family members and patient/client advocates. This was followed by four focus groups comprised of 18 providers and administrators, six focus groups comprised of 50 consumers and other older adults, and five focus groups comprised of 39 caregivers (family members and advocates). RESULTS: The unmet needs fell into three categories: mental health services, physical health services, and social services. Two interrelated themes were identified by participants: 1) the need for age-appropriate and culturally appropriate services to overcome barriers to mental health services access, use, and quality; and 2) the interrelations between unmet needs that address prevention as well as treatment of mental illness, including socialization and social support, transportation, housing, and physical health care. Differences in stakeholder assessment of unmet needs were associated with respective roles in delivery and use of mental health services. CONCLUSION: Age-appropriate and culturally appropriate solutions that address both prevention and treatment may represent the best strategies for addressing the challenges of mental illness and are most likely to be endorsed by all three groups of stakeholders.

Costs of community-based public mental health services for older adults: variations related to age and diagnosis.

BACKGROUND: Several studies have examined service use among older adults although, to our knowledge, none has examined costs from a systems perspective. This study examined use and costs of mental health services among older adults in San Diego County in order to determine how expenditures and modes of service varied by age cohort and psychiatric diagnosis. METHODS: Utilization data from San Diego County Adult and Older Adult Mental Health Services (AOAMHS) were used to identify older adults (age > or = 60) receiving services in the community during fiscal year 2003-2004. Cost data were derived from detailed examination of cost reports, and Medicaid fee schedules. Trends in demographic and clinical characteristics by six age cohorts were described. Multivariate models were used to estimate the relationships between costs, age, and clinical diagnosis while controlling for other demographic and clinical characteristics. Components of costs were also examined. RESULTS: Total expenditures declined from age cohorts 60-64 through ages 85 and over. Expenditures were similar, and greatest, for clients with schizophrenia and bipolar disorder, while outlays were lower for those with major depression, other psychotic disorder, other depression, anxiety, substance use disorder, and cognitive disorders. Clients diagnosed with cognitive disorder had high use of emergency services and little connection to outpatient services. CONCLUSIONS: Expenditures were related to age and clinical diagnosis. Future efforts should investigate older adults' pathways to care, and should determine whether older adults presenting in emergency services would benefit from a specialized case management program providing linkages to community based resources.

Tri-ethnic variations of co-morbid substance and alcohol use disorders in schizophrenia.

OBJECTIVES: This study examined the differential prevalence of substance and alcohol use disorders among European Americans, African Americans, and Latinos with schizophrenia (n = 6424) who received public mental health services in San Diego County during fiscal year 2002-2003. METHODS: Data were obtained from the public mental health database used by the San Diego County Mental Health System. Chi-Square analyses and stepwise logistic regression analyses were used to examine differences regarding the prevalence of substance and alcohol use among clients with schizophrenia and schizoaffective disorder, and to analyze the sociodemographic variables associated with this co-morbidity. RESULTS: Significant differences in the prevalence of diagnosed co-morbidity were found across the ethnic groups. Rates of co-morbid diagnosis among African Americans (25%) were significantly higher than those among European Americans (22%) and Latinos (19%). Logistic regression results revealed ethnicity was a significant predictor of co-morbid substance and alcohol use, as was being homeless and male. Among Latinos, language preference was also a significant predictor. Latinos who denoted English as their primary language were 1.7 times more likely to be diagnosed with co-morbid substance or alcohol use disorders than Latinos who denoted Spanish. CONCLUSIONS: Among people with schizophrenia, there were significant differences in prevalence rates and predictors of diagnosed co-morbid substance and alcohol use disorders. Future research is needed to examine the relationship among language preference, level of acculturation, and subsequent diagnosing barriers for Latinos. Among African Americans, the reasons behind increased co-morbidity rates need to be examined, and homelessness should be carefully addressed among all three ethnic groups.