Social support and managing schizophrenia in Tanzania: Perspectives from treatment-engaged individuals and relative caregivers.

Background: In lower-resource settings like Tanzania, people living with schizophrenia (PWS) rely on their families for much of their social support, thus leading family members to become their main caregivers. How PWS and their families understand and implement social support can profoundly impact recovery pathways. This study examines how PWS and caregivers of PWS in Tanzania describe receiving and giving social support. We describe, from the perspectives of treatment engaged PWS and unmatched caregivers, different types of social support experienced and provided and examine any differences in the types and expectations of social support expressed by PWS versus caregivers. Methods: A total of 39 semi-structured in-depth interviews were conducted with PWS (n = 19) and caregivers (n = 20) recruited from outpatient psychiatric clinics in tertiary-level hospitals in Tanzania across two geographic regions. Thematic content analyses were based on four dimensions of social support (instrumental, emotional, informational, and appraisal). Results: Results revealed four themes: 1) Financial and basic needs support from families is common yet critical for daily living (instrumental support); 2) There were mixed experiences regarding provision and receipt of love and acceptance with desires and calls for more encouragement and moral support (emotional support); 3) Caregivers try to provide knowledge, guidance, and reminders related to illness management for PWS but acknowledge their own gaps in understanding recovery promotion and effective caregiving (informational & appraisal supports), 4) A cross-cutting issue was calls for more social support from the wider community. Conclusion: Social support is a multi-dimensional construct recognized by PWS and caregivers as critical for illness management, yet gaps remain, often due to lack of knowledge of how to bolster social support. Given the heavy reliance on families for social support in lower-resource contexts, psychiatric services can intervene with clinic-based psychoeducation for PWS and their families to improve quality of life and functioning.

Functioning and quality of life among treatment-engaged adults with psychotic disorders in urban Tanzania: Baseline results from the KUPAA clinical trial.

BACKGROUND: There is a treatment gap for those living with severe mental illnesses in low- and middle-income countries, yet not enough is known about those who are currently accessing clinical services. A better understanding of potentially modifiable factors associated with functioning and quality of life will help inform policies and programming. AIMS: To describe the functioning and quality of life for a psychiatric treatment-engaged population living with psychotic disorders in two urban areas of Tanzania, and to explore their respective correlates. METHODS: This study analyzed cross-sectional data from 66 individuals enrolled in the Kuwezeshana Kupata Uzima (KUPAA) pilot clinical trial who had a diagnosis of schizophrenia or schizoaffective disorder, recent relapse, and who were receiving outpatient treatment. Baseline functioning (WHO Disability Assessment Schedule 2.0) and quality of life (WHO Quality of Life BREF scale) were measured. Univariable and multivariable regression analyses were conducted to determine correlates of functioning and quality of life. RESULTS: Adjusted analyses indicated that higher disability was associated with higher food insecurity, more symptomatology, more self-stigma, less instrumental support, less hope, lower self-efficacy, and/or lower levels of family functioning. Higher quality of life was associated with higher levels of self-efficacy, more hopefulness, more instrumental support, less self-stigma, and better family functioning. CONCLUSIONS: Identification of factors associated with disability and quality of life can help clinicians and policymakers, as well as consumers of mental health services, to better co-design and target psychosocial interventions to optimize their impact in low-resource settings. TRIAL REGISTRATION: Trial registration: ClinicalTrials.gov # NCT04013932, July 10, 2019.

"These Places are easy to get into but Impossible to get out of": Women's Pathways to Psychiatric Institutions and Barriers to Community Reentry in India.

In India, where institutional-based mental health care is common, gender and other intersecting marginalized identities along with absent familial support contribute to women's admission and prolonged confinement to psychiatric institutions. However, an intersectional analysis of factors that prevent women with limited familial support from returning to their communities is lacking. This article is based on narratives of eleven women residing at a halfway home in an urban city in India, awaiting return to their communities. We include descriptions and an intersectional analysis of women's pathways to psychiatric institutions, their experiences receiving institutional-based mental health care, and the challenges they face as they contemplate returning to their communities. This study adds to the minimal research examining women's gendered pathways to psychiatric institutions in India. Women's narratives highlight that gender and illness-related disadvantages coupled with economic adversity that led to the initial admission also serve as deterrents to reentering the community.

Employment of trauma informed principles in the Palabras Fuertes project: Implications for narrative research with older Latinx communities.

In the US, there is a growing number of older Latinx communities. Qualitative approaches such as narrative inquiry may be fruitful endeavors to elucidate their lived experiences. However, older Latinx communities, including sexual minorities, are disproportionately exposed to social, health, and historical challenges that may result in exposure to potentially traumatic events (e.g. discrimination, illness, grief, etc.). The recognition of high rates of exposure to potentially traumatic events among participants has led to the recommended adoption of Trauma Informed (TI) principles for use in non-trauma specific research. At present, there are limited examples and discussions about the implementation of TI principles in qualitative research and our literature review yielded no discussion of the use of TI principles in narrative inquiry or with older Latinx communities. In this manuscript, we advocate for the adoption of TI principles when engaging in narrative inquiry with older Latinx adults. Second, we discuss examples of TI guided practices we employed while conducting the Palabras Fuertes study of life history narratives with older Latino immigrant gay men living in New York City. Finally, based on these experiences, we provide recommendations for incorporating TI into future narrative research with older Latinx communities.

Older immigrant Latino gay men and childhood sexual abuse: Findings from the Palabras Fuertes project.

Childhood Sexual Abuse (CSA) and maltreatment have long-term negative impacts on survivors, including older adults. Yet, limited qualitative examinations of how these experiences impact the lives of older adults exists and even fewer among older Latino gay men. We drew data from life-history narratives the first author conducted with five Spanish speaking older Latino gay men in New York City. Our analyses were guided by an Ecological Model, a Suffering lens, and our clinical social work experience with older adults, sexual minorities and people of color. All participants reported sexual experiences prior to the age of 15 and possible emotional and physical maltreatment. Yet, not all participants perceived these experiences as abuse. Our findings indicate how cultural, linguistic and contextual factors may affect disclosure and coping. Despite the fact that CSA and maltreatment occurred decades ago, these early experiences affected long-term psychosocial functioning. Our findings support a need for future research and clinical practice that considers the subjective perceptions of childhood sexual experiences and maltreatment and how these relate to psychosocial functioning in Latino gay men during older adulthood.

High Life Satisfaction: Exploring the Role of Health, Social Integration and Perceived Safety among Mexican Midlife and Older Adults.

We sought to investigate the relationship of high life satisfaction with important physical health, mental health, social integration and perceived safety factors among midlife and older Mexican adults. We examined 2,200 midlife and older adults (aged 50-101 years) from the Mexican arm of the Study on global AGEing and adult health (SAGE) and used binary logistic regression models to identify key factors associated with high LSA. Our final logistic regression model revealed self-rated health, affect, interpersonal activities and perceived safety on street to be significantly associated with high life satisfaction. Results from this study add to the nascent literature on subjective well-being of midlife and older Mexicans. Although social work with older adults is not well established in Mexico, researchers and practitioners should collaborate on the development and implementation of social worker-led strategies for prevention and intervention to enhance well-being among midlife and older Mexicans.

Women's Experiences and Perceptions of Depression in India: A Metaethnography.

In India, social determinants of health, including poverty, domestic violence, and inadequate social support disproportionately affect women, leaving them more vulnerable to depression than men. We conducted a metaethnography to synthesize qualitative data from 13 studies (1987-2017) that explored women's experiences and perceptions of depression in India. We used a feminist standpoint to critically examine how gender shapes these experiences and perceptions. Indian women's experiences of depression were embedded in their social worlds. Women perceived interpersonal conflict, caregiving burden, domestic violence, financial insecurity, adverse reproductive events and widowhood as causes of depression. Women used cultural expressions to describe physical, emotional, and cognitive distress. The detrimental impact of discriminatory social conditions, gender inequalities, and traditional gender roles on Indian women's mental health highlights the need for gender-sensitive mental health research and practice that can attend to women's sociocultural context and promote values of gender equality and social justice.

Design Challenges of an Episode-Based Payment Model in Oncology: The Centers for Medicare & Medicaid Services Oncology Care Model.

The Centers for Medicare & Medicaid Services developed the Oncology Care Model as an episode-based payment model to encourage participating practitioners to provide higher-quality, better-coordinated care at a lower cost to the nearly three-quarter million fee-for-service Medicare beneficiaries with cancer who receive chemotherapy each year. Episode payment models can be complex. They combine into a single benchmark price all payments for services during an episode of illness, many of which may be delivered at different times by different providers in different locations. Policy and technical decisions include the definition of the episode, including its initiation, duration, and included services; the identification of beneficiaries included in the model; and beneficiary attribution to practitioners with overall responsibility for managing their care. In addition, the calculation and risk adjustment of benchmark episode prices for the bundle of services must reflect geographic cost variations and diverse patient populations, including varying disease subtypes, medical comorbidities, changes in standards of care over time, the adoption of expensive new drugs (especially in oncology), as well as diverse practice patterns. Other steps include timely monitoring and intervention as needed to avoid shifting the attribution of beneficiaries on the basis of their expected episode expenditures as well as to ensure the provision of necessary medical services and the development of a meaningful link to quality measurement and improvement through the episode-based payment methodology. The complex and diverse nature of oncology business relationships and the specific rules and requirements of Medicare payment systems for different types of providers intensify these issues. The Centers for Medicare & Medicaid Services believes that by sharing its approach to addressing these decisions and challenges, it may facilitate greater understanding of the model within the oncology community and provide insight to others considering the development of episode-based payment models in the commercial or government sectors.

Psychotic Experiences in the Context of Police Victimization: Data From the Survey of Police-Public Encounters.

Social defeat has been proposed as the common mechanism underlying several well-replicated risk factors for sub-threshold psychotic experiences (PEs) identified in epidemiological research. Victimization by the police may likewise be socially defeating among vulnerable individuals and, therefore, may be associated with elevated risk for PEs. However, no prior studies have examined the relation between police victimization and PEs. We tested the hypothesis that exposure to police victimization (ie, physical, sexual, psychological, and neglect) would be associated with increased odds for PEs in the Survey of Police-Public Encounters data (N = 1615), a general population sample of adults from 4 US cities. Respondents who reported each type of police victimization were more likely to report PEs in logistic regression analyses (all P < .01), most of which were significant even when adjusting for demographic variables, psychological distress, and self-reported crime involvement (adjusted OR range: 1.30 to 7.16). Furthermore, the prevalence of PEs increased with greater exposure to police victimization in a linear dose-response relation, OR (95% CI) = 1.44 (1.24-1.66). These findings suggest that police victimization is a clinically important and previously unreported risk factor for PEs in the urban US population. These findings support the need for community-based outreach efforts and greater police training to reduce the prevalence of this exposure, particularly in socially disadvantaged urban communities.

Life Course Challenges Faced by Siblings of Individuals with Schizophrenia May Increase Risk for Depressive Symptoms.

BACKGROUND: Research suggests siblings of individuals with schizophrenia are at a heightened risk for depressive symptomatology. Research has not yet examined whether the strains of growing up with a brother or sister with schizophrenia contribute to this risk. This study examined whether early life course burdens associated with an emerging mental illness, and current objective and subjective caregiver burden predicted depressive symptoms in siblings of individuals with schizophrenia. METHOD: Forty-one siblings of individuals with schizophrenia were recruited from a large study of schizophrenia neurobiology to complete a self-administered questionnaire and a neuropsychological test battery. RESULTS: Early life course burdens and current objective and subjective burdens explained incremental variance in depressive symptoms of siblings of individuals with schizophrenia after accounting for gender and global neurocognitive function. Higher levels of depressive symptoms among siblings were associated with perceptions of being stigmatized by the community (ß=.37, p<.01), and perceiving that the brother or sister's emerging illness negatively impacted the sibling's social life during childhood and adolescence (ß=.39, p<.01). Taking on adult responsibilities while the sibling was growing up was found to be protective against depressive symptoms in adulthood (ß= -.36, p<.01). CONCLUSIONS: Early life course burdens associated with having a sibling with schizophrenia and current subjective burden provide insight into psychosocial factors that may contribute to the risk for depression in this sibling group. Mental health service providers and psychoeducation programs would benefit by considering these factors when developing family-based interventions.

Major discriminatory events and risk for psychotic experiences among Black Americans.

Racism is a multidimensional construct that impacts risk for psychosis through various complex pathways. Previous research has yet to fully explore how major racial discriminatory events contribute to risk for psychotic experiences in the general population. We examined the National Survey of American Life to analyze the effects of 9 major racial discriminatory events on lifetime psychotic experiences among Black Americans. By examining each event separately, we found that police discrimination was associated with increased risk for lifetime psychotic experiences after adjusting for demographic variables, socioeconomic status, and co-occurring psychological or social problems. Being denied a promotion, being a victim of police abuse, and being discouraged from pursuing education were associated with lifetime visual hallucinations, and being discouraged from pursuing education was also associated with lifetime delusional ideation. None of the events were associated with lifetime auditory hallucinations. As a count of events, experiencing a greater range of major racial discriminatory events was associated with higher risk, particularly for lifetime visual hallucinations. Our findings point to the need for early detection and intervention efforts in community settings and multilevel efforts to eliminate racial discrimination. (PsycINFO Database Record

Suicidal ideation and suicide attempts among adults with psychotic experiences: data from the Collaborative Psychiatric Epidemiology Surveys.

IMPORTANCE: Suicide is a leading cause of preventable death, especially among individuals with psychotic disorders, and may also be common among nonclinical populations of adults with subthreshold psychotic experiences. Understanding this association has the potential to critically bolster suicide prevention efforts. OBJECTIVES: To examine the association between 12-month suicidality and 12-month psychotic experiences and to test the hypotheses that psychotic experiences are associated with increased prevalence of suicidal ideation and suicide attempts during the concurrent period and with greater severity of suicidal behavior. DESIGN, SETTING, AND PARTICIPANTS: Cross-sectional survey data were drawn from a large general population-based sample of households in the United States identified through the Collaborative Psychiatric Epidemiology Surveys (2001-2003). Adult household residents (n = 11,716) were selected using a clustered multistage sampling design with oversampling of racial/ethnic minority groups. Logistic regression models were adjusted for potential demographic confounders and co-occurring DSM-IV mental health conditions. EXPOSURES: Twelve-month psychotic experiences assessed with the Composite International Diagnostic Interview, version 3.0 psychosis screen. MAIN OUTCOMES AND MEASURES: Twelve-month suicidal ideation and suicide attempts. RESULTS: Respondents reporting psychotic experiences were more likely to report concurrent suicidal ideation (odds ratio [OR], 5.24; 95% CI, 2.85-9.62) and suicide attempts (OR, 9.48; 95% CI, 3.98-22.62). Most respondents with psychotic experiences (mean [SE], 65.2% [4.2%]) met criteria for a DSM-IV depressive, anxiety, or substance use disorder. Among respondents with suicidal ideation, those with psychotic experiences were likely to make an attempt during the concurrent 12-month period (OR, 3.49; 95% CI, 1.05-11.58) when adjusting for co-occurring psychiatric disorders. In contrast, depressive (OR, 1.67; 95% CI, 0.62-4.52), anxiety (OR, 1.57; 95% CI, 0.40-6.09), and substance use disorders (OR, 1.64; 95% CI, 0.24-11.17) did not reliably identify those at risk for attempts among respondents with suicidal ideation. The mean (SE) 12-month prevalence of suicide attempts among individuals reporting ideation and psychotic experiences and meeting criteria for any psychiatric disorder was 47.4% (10.9%) compared with 18.9% (4.8%) among those with just ideation and a disorder. Psychotic experiences were especially prevalent among individuals reporting severe attempts and may account for nearly one-third of attempts with intent to die (population attributable risk, 29.01%) in the United States annually. CONCLUSIONS AND RELEVANCE: Assessment of psychotic experiences among individuals with suicidal ideation has potential clinical and public health utility in reducing the prevalence of suicide attempts, particularly attempts with intent to die.

Development of an intervention to reduce self-stigma in outpatient mental health service users in Chile.

BACKGROUND: Latin America is characterized by a high prevalence of public stigma toward those with mental illness, and significant selfstigma among labeled individuals, leading to social exclusion, low treatment adherence, and diminished quality of life. However, there is no published evidence of an intervention designed to address stigma in the region. In light of this, a psychosocial intervention to reduce self-stigma among users with severe mental illness was developed and tested through an RCT in two regions of Chile. OBJECTIVES: To describe the development of the psychosocial intervention, assess its feasibility and acceptability, and evaluate its preliminary impact. METHODS: An intervention was designed and is being tested, with 80 users with severe mental illness attending two community mental health outpatient centers. To prepare the intervention, pertinent literature was reviewed, and experts and mental health services users were consulted. Feasibility and acceptability were assessed, and impact was analyzed, based on follow-up qualitative reports by the participants. RESULTS: The recovery-oriented, ten-session group intervention incorporates the Tree of Life narrative approach, along with other narrative practices, to promote a positive identity change in users, and constructivist psychoeducation, based on case studies and group discussions, to gather tools to confront self-stigma. The intervention was feasible to implement and well evaluated by participants, family members, and center professionals. Participants reported increased self-confidence, and the active use of anti-stigma strategies developed during the workshop. CONCLUSIONS: This group intervention promises an effective means to reduce stigma of mental illness within Chile and other Latin American countries and feasibility to scale up within mental health services.

The subjective experience of youths at clinically high risk of psychosis: a qualitative study.

OBJECTIVE: Understanding the experience of individuals across stages of schizophrenia is important for development of services to promote recovery. As yet, little is known about the experience of individuals who exhibit prodromal symptoms of schizophrenia. METHODS: Audiotaped interviews were conducted with 27 participants of diverse racial-ethnic backgrounds who were at clinically high risk of psychosis (15 males and 12 females; mean age 21). Phenomenological qualitative research techniques of coding, consensus, and comparison were used. RESULTS: Emergent themes differed by gender. Themes for males were feeling abnormal or "broken," focus on going "crazy," fantasy and escapism, and alienation and despair, with a desire for relationships. Themes for females were psychotic illness among family members, personal trauma, struggle with intimate relationships, and career and personal development. CONCLUSIONS: The finding of relative social engagement and future orientation of females identified as at risk for psychosis is novel and has implications for outreach and treatment.

Treatment seeking and unmet need for care among persons reporting psychosis-like experiences.

OBJECTIVE: Psychosis-like experiences may be clinically significant given their demonstrated associations with concurrent psychological distress and the later development of diagnosable psychotic disorders. Prior studies of treatment for psychosis-like experiences have yielded conflicting results. The aims of this study were to investigate help seeking and need for care among individuals with psychosis-like experiences in a large general population sample. METHODS: Data from the Collaborative Psychiatric Epidemiology Surveys (N=10,541) were used to examine help-seeking behaviors among survey respondents who reported psychosis-like symptoms over a 12-month period. Adjusted odds ratios were calculated for a variety of help-seeking variables, with control for demographic factors and co-occurring psychiatric conditions. RESULTS: Among the 10,541 respondents, 3.4% reported a psychosis-like experience in the past 12 months. Respondents who reported psychosis-like experiences were more than twice as likely as those who did not to seek treatment. Those who reported such experiences but who did not seek treatment were more likely to have felt the need for or to have been encouraged by others to seek treatment and less likely to have felt that they had no psychiatric problem. Associations with unmet need for care were largely attributable to co-occurring psychiatric disorders. CONCLUSIONS: Respondents with psychosis-like experiences had elevated rates of help seeking, as well as significant unmet clinical need among those not in treatment.

Mediation analysis of critical time intervention for persons living with serious mental illnesses: assessing the role of family relations in reducing psychiatric rehospitalization.

OBJECTIVE: Critical Time Intervention (CTI) is a time-limited care coordination intervention designed to reduce homelessness and other adverse outcomes for persons living with serious mental illness during the transition period between institutions and community living. This study assesses whether CTI improves the quality of family relationships between family members and individuals living with serious mental illness, and examines whether changes in quality of family relationship mediated the association between the intervention and psychiatric rehospitalization outcomes. METHOD: This study utilizes data from a randomized controlled trial that assessed the effect of CTI in preventing homelessness. Following discharge from inpatient psychiatric treatment in New York City, 150 previously homeless persons living with serious mental illness were randomly assigned to receive usual services only or 9 months of CTI in addition to usual services. RESULTS: Findings from mixed-effects regression models indicated that those assigned to the CTI group reported greater frequency of family contact and greater improvement in satisfaction with family relations than the comparison group during the 18-month follow-up period. Mediation analysis revealed that greater improvement in satisfaction with family relations mediated the effect of CTI on psychiatric rehospitalization outcome, but only at a modest level. CONCLUSION AND IMPLICATIONS FOR PRACTICE: These findings suggest that a relatively brief but targeted intervention delivered at the point of hospital discharge may contribute to strengthening family relations and that improvement in perceived family relationship quality can contribute to a reduction in psychiatric rehospitalization.

Acculturative stress and psychotic-like experiences among Asian and Latino immigrants to the United States.

Previous studies have shown variation in the prevalence and incidence of psychosis across immigrant groups, but the underlying mechanisms are not fully understood. Stress related to acculturation may increase risk for psychosis among immigrant groups. In this study we examine the association between acculturative stress and psychotic-like experiences in a sample of Latino- and Asian-American immigrants to the United States in the National Latino and Asian American Study (n=2434). Acculturative stress was associated with visual and auditory hallucinations among Asians, but only with hearing voices among Latinos. Increased risk for psychotic-like experiences among Latinos was primarily associated with younger age of immigration. Acculturative stress appears to be a promising candidate mechanism explaining the relationship between immigration and psychosis, particularly among Asian Americans. Ethnic differences may reflect variability between groups that integrate more readily into the host culture and those that are subject to greater discrimination and environmental adversity.

Child loss and psychosis onset: evidence for traumatic experience as an etiological factor in psychosis.

Previous research suggests that trauma may contribute to psychosis onset. In this study, we examine the effect of parental loss of a child on the onset of psychotic experience using data from the National Comorbidity Survey Replication, hypothesizing that child loss will precede the onset of psychosis and will be associated with a later age of onset. We likewise tested this association for six other psychiatric conditions to demonstrate specificity for psychosis. Individuals with a psychotic disorder who had lost a child had a significantly later age of onset, particularly in males, even when controlling for demographic variables and co-occurring substance abuse and psychiatric disorders. Psychosis onset frequently occurred within a year of child loss. No associations were found between child loss and onset of other psychiatric conditions, supporting specificity of the effect on psychosis. The presented findings implicate child loss as an etiological factor in the onset of psychosis, providing converging evidence with previous studies demonstrating associations between more widely studied trauma exposures (abuse, neglect, and assault) and psychosis.

Family history of schizophrenia as a risk factor for axis I psychiatric conditions.

People with first-degree relatives with schizophrenia are at an elevated risk of developing the disorder themselves. High rates of psychotic symptoms in non-psychotic disorders, high rates of comorbidity in psychotic disorders, and diversity of outcomes following psychosis-risk states together suggest that this vulnerability may be for psychiatric conditions in general, not limited to schizophrenia. In this study, data from the National Survey of American Life (NSAL) were used to examine the association between having a first-degree relative with schizophrenia and the lifetime development of a range of non-psychotic axis I psychiatric disorders using adjusted odds ratios. Having a relative with schizophrenia was associated with increased risk for most non-psychotic psychiatric conditions examined, including those expected to be associated with schizophrenia (affective, anxiety, and substance use disorders) and those not expected (bulimia, disorders of childhood onset), excluding respondents with lifetime psychotic symptoms and controlling for demographic factors. Family history of schizophrenia among this predominantly African-American and Afro-Caribbean sample appears to be a risk factor for a range of axis I diagnoses, supporting a continuous rather than categorical nature of psychiatric vulnerability. Future studies should examine whether these associations are due to genetic or environmental factors, or both.

Economic expenditures associated with instrumental caregiving roles of adult siblings of persons with severe mental illness.

Siblings of persons with mental illness who assume primary caregiving roles experience substantial and tangible economic impacts associated with this responsibility. This study investigated mailed survey responses collected from 156 adult siblings of persons with mental illness from New York State to examine instrumental costs associated with providing support to siblings with illness. Genders of both siblings, severity of the relatives' mental illness, and number of surviving parents in the family distinguished those occupying primary caregiving responsibility from those not in primary roles. Current caregivers incurred greater instrumental costs in the form of financial expenses, time spent in care activities, and crisis involvement than did those who were not primary care providers. Additional demographic and behavioral factors related to siblings with and without illness were associated with specific dimensions of instrumental expenditure. As siblings become increasingly engaged in caregiving, social service professionals must assume leadership in promoting programs and policies that meaningfully support family involvement for relatives with mental illness.