Test of the stress process model of family caregivers of people living with schizophrenia in China.

Across the world, people living with schizophrenia (PLS) are often cared for by family caregivers. This is especially true in China where community-based systems of care for PLS are underdeveloped. Thus, family caregivers of PLS may experience emotional distress and burden in the absence of community-based services. Pearlin (1990) proposed a highly influential model for understanding the stress process and its relationship to health and wellbeing. Although the model has been examined worldwide, it has yet to be studied in China for caregivers of PLS. In the present study, we use Pearlin's stress process model to examine the mediating effect of perceived caregiver burden, family functioning, and caregivers' positive feelings about caregiving on PLS global functioning and caregiver depressive symptoms. We also examine whether the model differs for parent and spouse caregivers. A total of 327 primary family caregivers of PLS in Hunan province, China, were assessed cross-sectionally using culturally-validated measures. Bootstrap methods with Hayes's PROCESS Macro were used to test multiple mediation models of global functioning scores of PLS and caregiver depressive symptoms. In this first study of the stress process model of family caregivers of PLS in China, the results generally support the model. Caregiver perceived burden, family functioning, and positive caregiver feelings about caregiving all mediate the relationship between PLS global functioning and caregiver depression, with perceived caregiver burden having the strongest indirect effect. Analyses also show that the stress process differs between parent and spouse caregivers, with perceived caregiver burden a mediator for both groups but family functioning only a mediator for parent depressive symptoms. We discuss implications of these findings for extending the stress process model cross-culturally; suggest hypotheses for future research to examine parent and spouse differences; and discuss fruitful directions for intervention.

[Obstacles, difficulties, and facilitators in setting up a research project funded by the Hospital Program for Nursing and Paramedical Research : Lessons learned from a mental health research project] / Freins, difficultés et facilitateurs dans la mise en place d'une recherche financée par le Programme hospitalier de recherche infirmière et paramédicale (PHRIP) : retour d'expérience d'un projet de recherche en santé mentale.

Nursing research continues to grow and become self-sustaining. It was in this context that we received funding from the Hospital Program for Nursing and Paramedical Research for our research project on schizophrenia. Schizophrenia is a mental disorder that affects 1% of the general population, and is a crippling disease both cognitively and socially. Cognitive remediation and therapeutic education are nursing practices deemed suitable for the psychosocial rehabilitation of schizophrenia patients. We hypothesized that a therapeutic education program placed upstream of cognitive remediation would have beneficial effects. We planned to include eighty patients aged eighteen to sixty, randomized into two groups, one combining cognitive remediation and therapeutic education, the second using just cognitive remediation. Each patient was assessed using a range of neuropsychological scales. Due to difficulties encountered in including and following up with participants, our statistical results could not be used. We therefore turned our focus to the factors that facilitate and hinder the setting up of a nursing research project. We organized these factors into three areas : those related to the nurse ; those related to the care facility and the organization ; and those related to the research. The results were consistent with the literature and show how important it is to encourage nurses to be more involved in a scientific approach.

Defining the concept of family caregiver burden in patients with schizophrenia: a systematic review protocol.

BACKGROUND: Since the deinstitutionalization policy, in psychiatric hospitals, the care of patients with schizophrenia was left to their families which has been imposing a heavy burden on them. Family caregiver burden could have consequences for caregivers, patients, and the society. There is very little consensus on the definition and dimensions of the caregiver burden, which leads to a lack of consistency in the results of research. Thus, the present study was aimed to redefine the family caregiver burden of patients with schizophrenia. METHODS: The databases PubMed, Scopus, Web of Science, MEDLINE (Via Ovid), ProQuest, SCI, Magiran, SID, and IranDoc will be searched from 1940 to 2018 using subject headings and appropriate terms in both Farsi and English languages. Also, gray literature and the reference list of included articles will be used to offer an appropriate definition of the family caregiver burden in patients with schizophrenia. Two independent reviewers will participate in study selection, data collection, and quality assessment steps. The result will be presented in tabular form, and meta-synthesis will be performed. DISCUSSION: The result of this systematic review will help present the comprehensive definition of the family caregiver burden in patients with schizophrenia according to its evolutionary trend. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42018099372.

Schizophrenia Spectrum Disorder Disparity Among African-Americans.

Worldwide, Schizophrenia Spectrum Disorder (SSD) affects a low percentage of individuals, but a severe health disparity exists for African-Americans, especially men. Several factors are contributing to this inequality. These factors occur at the individual, social, and organizational levels. With the other challenges facing African-Americans, SSD disparity is another shackle affecting this population. For health care providers, the challenges are treating a complex disorder in a hard to reach and stigmatized population. The purpose of this article is to provide an overview of the SSD disparity among African-Americans as identified in the literature and to discuss the role that Advanced Practice Nurses and other mental health providers have in reducing the disparity.

The burden, support and needs of primary family caregivers of people experiencing schizophrenia in Beijing communities: a qualitative study.

BACKGROUND: Family caregivers play crucial roles in taking care of people experiencing schizophrenia in the community. The burdens on and needs of caregivers of these patients should be emphasized. This study aimed to explore the perspective of family caregivers of people experiencing schizophrenia in the communities of Beijing in terms of the burdens of care and the acquisition and further need for support in order to provide guidance to health care providers regarding how to target therapeutic interventions for families of individuals experiencing schizophrenia and to provide recommendations for policy makers to tailor countermeasures and services. METHODS: A total of 20 family caregivers of schizophrenia patients were enrolled in our study. A face-to-face and semi-structured in-depth qualitative interview study was conducted to explore the caregivers' perspective on the burden on caregivers, support and further needs. This study was conducted in the community health service centres where the family caregivers regularly visit. The study was carried out according to good ethical practices, data analysis and reporting guidelines. RESULTS: Most participants reported that they were suffering from heavy life burdens and had negative experiences with respect to obtaining social support, and they emphasized that they would require more support. Economic and daily housework burdens, limited social communication, and psychological stresses were the principal burdens. Support including financial, medical and information and educational support did not satisfy the needs of the caregivers and their patients. More financial support, respect, and rehabilitation institutions were reported to be needs of the caregivers. CONCLUSIONS: Family caregivers of people experiencing schizophrenia suffer from heavy physical and psychological burdens; however, the current support provided is insufficient. More services and better public attitudes should be considered for people experiencing schizophrenia and their caregivers.

Does improvement in symptoms and quality of life in chronic schizophrenia reduce family caregiver burden?

The longitudinal association of changes in clinical status among adults with schizophrenia and changes in family caregiver burden has not been demonstrated. Using data from the NIMH-funded CATIE schizophrenia trial (n = 446 family caregivers), we examined the association of changes in patient symptoms and quality of life with changes in measures of family caregiver burden. Clinical changes in patient symptoms and quality of life were not significantly associated with changes in family caregiver burden. The weak association likely reflects that small clinical changes in chronically ill adults are insufficient to affect long established experiences of burden.

Burden for Parents of Patients With Schizophrenia-A Nationwide Comparative Study of Parents of Offspring With Rheumatoid Arthritis, Multiple Sclerosis, Epilepsy, and Healthy Controls.

BACKGROUND: The study aimed to (1) compare the risk of health care use, adverse health status, and work productivity loss of parents of patients with schizophrenia to parents of patients with multiple sclerosis (MS), rheumatoid arthritis (RA), epilepsy, and healthy controls; and (2) evaluate such outcome measures while considering disease severity of schizophrenia. METHODS: Based on linkage of Swedish registers, at least one parent was included (n = 18215) of patients with schizophrenia (information 2006-2013, n = 10883). Similarly, parental information was linked to patients with MS, RA, epilepsy, and matched healthy controls, comprising 11292, 15516, 34715, and 18408 parents, respectively. Disease severity of schizophrenia was analyzed. Different regression models yielding odds ratios (OR), hazard ratios (HR), or relative risks (RR) with 95% confidence intervals (CI) were run. RESULTS: Psychiatric health care use, mainly due to anxiety and affective disorders, showed a strongly increasing trend for parents of patients with schizophrenia throughout the observation period. During the follow-up, these parents had an up to 2.7 times higher risk of specialized psychiatric health care and receipt of social welfare benefits than other parents. Parents of the moderately severely ill patients with schizophrenia had higher risk estimates for psychiatric health care (RR: 1.12; 95% CI: 1.07-1.17) compared with parents of least severely ill patients. CONCLUSIONS: Parents of patients with schizophrenia have a considerably higher risk of psychiatric health care and social welfare benefit receipt than other parents. Psychiatric health care use worsens over time and with increasing disease severity of the offspring.

Which Types of Tobacco Treatment Interventions Work for People with Schizophrenia? Provider and Mental Health Consumer Perspectives.

People with schizophrenia and other psychotic disorders (PWS) consume tobacco at high rates, resulting in disproportionate tobacco-related morbidity and mortality. Conventional tobacco treatment (TT) approaches may not adequately address unique affective, cognitive, and social challenges of PWS during cessation. This study sought to obtain provider and mental health consumer perspectives on effective, desirable, applicable, and acceptable components of TT for PWS. This convergent mixed-method study used structured interviews and a cross-sectional survey to obtain data. Eighteen mental health consumers and six mental health providers were engaged in face-to-face or telephone interviews. The qualitative data were analyzed using content analysis and theme identification and descriptive statistics were used for the analysis of quantitative data. In the qualitative analysis, consumers endorsed education, counseling, social support, and pharmacotherapy as key TT components. Consumers further stressed the need for flexible interventions that are available at any point in a quit attempt. Both providers and consumers endorsed targeting TT interventions to consider learning needs, potential cognitive issues, and motivation for behavioral change. Providers encouraged a recovery-driven TT framework with peer support and health promotion activities. Quantitative findings mirrored the qualitative findings with support sessions, relapse prevention, and skills training having the highest desirability, applicability, and acceptability TT component scores. Providers and consumers agreed on components of an effective TT program targeted to PWS. Given these findings, it is crucial to further investigate successful TT approaches for PWS and to test whether targeted or tailored programs are more effective than conventional approaches.

Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support.

OBJECTIVE: Caregivers experience physical and mental stress that ends up lowering their quality of life (QoL). Our goal was to research (a) the level of caregivers QoL; (b) the relationships between the demographic characteristics of the caregivers, their caregiving burden, their family functioning, their social and professional support and their QoL and (c) the best predictors of caregivers QoL. METHODS: 100 key caregivers (70% parents, 8% spouses, 17% siblings and 5% children) were studied using the world health organization quality of life-Bref (WHOQOL-BREF) to research their QoL, the Zarit Scale to assess their perception of their caregiving burden, the Social Network Questionnaire to examine their social support, the Family APGAR to assess the satisfaction with social support from the family and a professional support scale (Escala de Apoyo Profesional) to determine the professional support received by caregivers was performed. RESULTS: Scores on the WHOQOL-BREF in the Physical, Psychological, Social and Environment domains were 15.0 (SD = 3.7), 13.3 (SD = 4.2), 11.0 (SD = 4.7) and 13.5 (SD = 3.1), respectively. Through bivariate analysis, the dimensions that showed a positive significant association with QoL were being a young male caregiver who was a working father with a high educational level and help from other family members. Caregivers of patients who were older and had a later onset of the illness, a lower score on the Zarit Scale and a high score on the Social Network Questionnaire, Family APGAR and Escala de Apoyo Profesional showed higher QoL. Many of these variables made a unique contribution in the multivariate analysis. CONCLUSIONS: There is a significant association between the caregiver's burden and their QoL. Regression analysis showed that the best predictors of QoL were caregiving burden, social support and professional support.

A pilot study of a family cognitive adaptation training guide for individuals with schizophrenia.

OBJECTIVE: There is a paucity of accessible, evidence-based tools for caregivers of individuals with schizophrenia. This study examines changes in the self-assessed and caregiver-assessed outcomes of people with schizophrenia after exposure to a cognitive adaptation training (CAT) guide that addressed pragmatic, in-home approaches to offset the cognitive impacts of the illness. METHOD: This study examined the 4-month, pre-post outcomes of a CAT guide, as compared with a popular, general manual, for families of individuals with schizophrenia. A total of 17 caregiver-supported individual dyads completed all measures, having been randomized to either a CAT-guide group or a support-manual group. Measures included medication adherence, adaptive functioning, quality of life, and caregiver burden. Semistructured interviews assessed use and utility questions. RESULTS: Caregiver-assessed improvements in community functioning with medium-high effect sizes were observed in both study conditions. Self-report ratings by supported individuals did not change from baseline to 4 months and no change was observed in medication adherence or quality of life for either condition. Caregiver-burden ratings significantly declined with a large effect size, again with no difference as a function of manual type. CONCLUSION AND IMPLICATIONS FOR PRACTICE: These findings suggest that there is some promise in providing families with evidence-based information in manual form. Further research informed by this study's findings should include assessments of whether and how environmental cognitive supports can be of specific benefit to families affected by schizophrenia. (PsycINFO Database Record

Factor analyses of the Chinese Zarit Burden Interview among caregivers of patients with schizophrenia in a rural Chinese community.

OBJECTIVE: This study aimed to evaluate the factor structure of the Chinese version of the 22-item Zarit Burden Interview (ZBI) among family caregivers of patients with schizophrenia in China. METHODS: Using one-stage cluster-sampling design, 324 primary caregivers of patients with schizophrenia in Ningxiang County, Hunan Province, China, completed the Zarit Burden Interview face-to-face. Confirmatory factor analysis (CFA) was first performed based on existing models to check model fit. Owing to an unsatisfactory result of CFA, exploratory factor analysis (EFA) was then conducted to explore a new factor structure, and a subsequent CFA was run to examine its model fit. RESULTS: The CFA results showed that none of the existing models fit the data reasonably well. The EFA results suggested five dimensions: negative emotion (10 items), interpersonal relationship (4 items), time demand (3 items), patient's dependence (2 items) and self-accusation and guilt (2 items). The following CFA confirmed the five-factor solution in this study, and the goodness-of-fit for this model fell within the acceptable range. The overall internal consistency (Cronbach's alpha) was 0.88, and the internal consistency coefficients of individual dimensions were 0.68 to 0.84. CONCLUSION: This study supported a 22-item ZBI scale, with a five-factor structure when applied to Chinese caregivers of patients with schizophrenia.

Assessment of Needs: Differences between male and female patients with schizophrenia needs in psychiatric hospitals in Baghdad city.

BACKGROUND: Gender differences are one of the most important and crucial subjects in evaluating the nursing care as well as mental health care system for psychiatric patients especially patients with schizophrenia. AIMS: We aimed to identify differences in needs of male and female patients with schizophrenia in psychiatric hospitals in Baghdad city and its relationship with some variables. METHOD: A descriptive, analytical design that was carried out by using Camberwell needs assessment, short appraisal schedule, self-report version (CANSAS-P) after translating to Arabic. RESULTS: Results indicated that there were a lot of unmet needs of male and female patients with schizophrenia, according to the entire CANSAS-P domains especially psychological symptoms. Differences were found in types of needs as the majority of men have more social needs while females was found to be more occupied with their fears and need safety. CONCLUSION: there were differences in types of need between male and female patients with schizophrenia; needs were affected by some variables such as educational level, first 10 days of admission and family visiting.

Caregiver's quality of life and its positive impact on symptomatology and quality of life of patients with schizophrenia.

BACKGROUND: Although the quality of life (QoL) experienced by patients with schizophrenia has been recognized, few studies have assessed the relationship between the caregivers' QoL and patients' QoL. METHODS: The study included 253 stabilized outpatients with schizophrenia and their caregivers from 3 Mental Health Services in Bolivia (N = 83), Chile (N = 85) and Peru (N = 85). Caregivers' and patients' QoL were respectively assessed using two specific QoL questionnaires (S-CGQoL and S-QoL 18). We collected socio-demographic information and clinical data. Multiple linear regressions were performed to determine which variables were associated with patient's QoL. We tested the following hypothesis using structural equation modeling (SEM): caregivers' QoL may have an indirect effect on patients' QoL mediated by their influence of the severity of psychotic symptoms. RESULTS: In the multivariate analysis, the caregivers' QoL was not significantly associated with the patients' QoL, except for one QoL dimension about relationship with family (Beta = 0.23). Among patients' characteristics, being a woman and Aymara, having lower educational level, unemployment and severity of symptoms was significantly associated to a lower QoL. The SEM revealed a moderate significant association between caregivers' QoL and psychotic symptoms severity (path coefficient = -0.32) and a significant association between psychotic symptoms severity and patients QoL (path coefficient = -0.40). The indirect effect of caregivers' QoL on patients' QoL was significant (mediated effect coefficient = 0.13). CONCLUSION: Improvement of caregiver's QoL may have a direct impact on the psychotic symptoms of patients and indirectly on patient's QoL, confirming the need for ongoing family interventions in these regions.

Comparing Affiliate Stigma Between Family Caregivers of People With Different Severe Mental Illness in Taiwan.

The family caregivers of people with mental illness may internalize the public stereotypes into the affiliate stigma (i.e., the self-stigma of family members). This study aimed to compare the affiliate stigma across schizophrenia, bipolar disorder, and major depressive disorder, and to investigate potential factors associated with affiliate stigma. Each caregiver of family members with schizophrenia (n = 215), bipolar disorder (n = 85), and major depressive disorder (n = 159) completed the Affiliate Stigma Scale, Rosenberg Self-Esteem Scale, Caregiver Burden Inventory, Taiwanese Depression Questionnaire, and Beck Anxiety Inventory. After controlling for potential confounders, the hierarchical regression models showed that caregivers of a family member with schizophrenia had a higher level of affiliate stigma than those of bipolar disorder (ß = -0.109; p < 0.05) and major depressive disorder (ß = -0.230; p < 0.001). Self-esteem, developmental burden, and emotional burden were significant factors for affiliate stigma. The affiliate stigma of caregivers is associated with their self-esteem, caregiver burden, and by the diagnosis.

Psychological Correlates of Burden Among Jordanian Caregivers of Patients With Serious Mental Illness.

PURPOSE: To examine prediction power of personality traits, expressed emotion, and coping strategies on caregivers' burden. DESIGNS AND METHODS: Cross-sectional descriptive correlational design was used to collect data from 196 caregivers using the Self-Administered Questionnaire from Jordanian caregivers of patients with serious mental illness. FINDINGS: Jordanian caregivers had a moderate-to-severe burden level (M = 47.1, SD = 11.5). Burden had a significant negative relationship with coping (r = -.15, p = .04) and significant positive relationship with personality dysfunction (r = .16, p = .021). Emotional expression, coping, and personality were found to be significant predictors of burden (F = 5.16, p = .002). PRACTICE IMPLICATIONS: Mental health professionals need to address family caregivers in their plans of care.

Caring for an intimate stranger: parenting a child with psychosis.

WHAT IS KNOWN ON THE SUBJECT: The care of an adult son or daughter with psychosis is filled with overwhelming demands caused by the symptomatology and illness exacerbations. Parents display disenfranchised grief over multiple losses and report increased levels of emotional burden. Most studies use quantitative methods and rely on pre-existing theoretical frameworks to investigate, through psychometric measures, the effects of being a carer. Meaning attributions to the disorder, and changes in parent-child relations over time, are poorly understood. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: This hermeneutic phenomenological study illuminates the subjective experience of parenting a son or daughter with psychosis, as it is lived and described by parents of young adults with psychosis. Findings suggest that the parents' perceptions of their child changes over the course of the disorder, leading to a redefinition of the parent-child relationship, causing alternations in attachment. Findings illuminate the parents' profound guilt over having contributed or not prevented the disorder, over not being 'good' parents and feeling ambivalent towards an 'intimate stranger.' Guilt is compensated by absolute dedication to the son or daughter's care, at the expense of their own well-being. WHAT ARE THE IMPLICATIONS FOR PRACTICE: Interventions for parents must be available as soon as possible, both during hospitalization and after discharge. Professionals should provide a therapeutic space, where parents could express intimate thoughts and feelings, address guilt, fear and resentment issues, be assisted in their parenting role as well as in the reconstruction of a sense of self and self-esteem. Professionals are invited to facilitate illness acceptance, provide accurate information, assist parents to redefine their relationship to the child and facilitate the integration of the traumatic experience into their personal and family narrative. Professionals must develop in depth awareness of their biases and attitudes, have an ongoing training on how to respond to the parents' needs, facilitate therapeutic change and accompany families through the course of their adult child's illness trajectory. ABSTRACT: Introduction Children who are diagnosed with psychosis often rely on their parents for prolonged care. The impact of such care is partially understood as most studies use quantitative methods and pre-existing theoretical frameworks that limit their investigation to emotional burden, and emotional responses. Aim Explore the parents' lived experience of caring for a child with psychosis. Method A hermeneutic phenomenological design was used with a sample of 16 parents of children with psychotic disorders who were hospitalized or attended the outpatient clinic of a large psychiatric Greek hospital. Results Identified themes were as follows: (i) the psychosis experience, (ii) redefinition of the parent-child relationship over the course of the disorder and (iii) challenges of parenting a child with psychosis. Discussion 'Caring for an intimate stranger' reflects the parents' overall experience, involving changes in the parent-child relationship, ambivalence towards caretaking and profound guilt, compensated by self-sacrifice parenting practices. IMPLICATIONS FOR PRACTICE: Findings highlight the necessity to train mental health professionals to provide individualized information; facilitate family communication; address the parents' guilt, ambivalence, meaning attributions that compromise adjustment; and support them through the challenges of parenting a son or daughter with psychosis.

Assessment and Care of Childbearing Women With Severe and Persistent Mental Illness.

Severe and persistent mental illness (SPMI) refers to complex mood disorders that include major depressive disorder with or without psychosis; severe anxiety disorders resistant to treatment; affective psychotic disorders including bipolar affective disorder, schizophrenia, and schizoaffective disorder; and other nonaffective subtypes of schizophrenia. SPMIs affect 1 in 17 people and are among the leading causes of disability and impaired health-related quality of life in the United States. Caring for childbearing women with preexisting SPMI can be challenging for maternal-child health clinicians. This article provides an overview of SPMI during pregnancy and challenges for clinicians, including early identification, accuracy of diagnoses, and appropriate management through care coordination among an interdisciplinary team that includes obstetric providers, psychiatrists, nurses, and others.

Comparison of burden among family members of patients diagnosed with schizophrenia and bipolar disorder in a large acute psychiatric hospital in China.

BACKGROUND: The difference of burden between caregivers of acute patients with schizophrenia and bipolar disorder has not been well studied in China, a culture where family responsibility has a very high value. Our aim is to compare family burden in these two categories diagnosis and to identify predictors of family burden in a large psychiatric hospital in China. METHODS: Two hundred forty-three schizophrenic patients and 200 bipolar patients were enrolled in a cross-sectional study. Patients were independently evaluated on symptoms, insight, attitudes toward medication, quality of life during the first week of their admissions. The prime caregiver for each patient was also evaluated with a standard measure of family burden within 1 week of patients' admission. RESULTS: Caregiver perceptions of violent behavior and suicidal risk among patients with bipolar disorder were significantly greater than among families of those with schizophrenia. Hierarchical regression analyses demonstrated differential correlates of burden for all predictive factors with R(2) values ranging from 0.14 to 0.27 in the five burden factors in schizophrenia families; and from 0.12 to 0.24 in bipolar disorder families. Symptoms severity explained the greatest proportion of variance, whereas patient and caregiver demographic variables explained much less variance. CONCLUSION: Family burden, especially the caregiver perceptions of violent and suicidal behaviors were greater in care givers of acute bipolar disorder patients than among caregivers of schizophrenia patients in the present sample. However, in families of patients with both disorders clinical features were the strongest predictor of caregiver burden.

Objective and subjective burden in relatives of patients with schizophrenia and its influence on care relationships in Chile.

This study examined the burden on family members of patients with schizophrenia in a Chilean community. Sixty-five caregivers underwent the Subjective and Objective Family Burden Interview. The results showed moderate to high levels of subjective burden and low levels of support from others in providing care. Burden and containment of disturbed behaviour were correlated with worse relationships between patients and caregivers, with the latter spending less time working outside the home. The assessed sample showed a similar pattern of burden to that of caregivers from developed countries; however, the extent of the burden tended to be higher in Chilean caregivers.