Measuring Perceived Rehabilitation Needs of Caregivers of People with Schizophrenia in Mainland China

This paper reports the development and validation of the Wuxi version of the Rehabilitation Needs Questionnaire for Caregivers of People with Schizophrenia (PRNQ-C-WX) based on the original Hong Kong version (PRNQ-C-HK). PRNQ-C-WX was validated by exploratory factor analysis (EFA) using a convenience sample consisting of 200 caregivers of people with schizophrenia. EFA yielded an eight-factor solution accounting for 63.8 % of the total variance which resulted in a 50-item PRNQ-C-WX. The questionnaire has excellent internal consistencies. Its factor structure is similar to the Hong Kong version. Some suggestions for policy, service and research development in mental health in mainland China are made.     

Measuring Perceived Rehabilitation Needs of People with Schizophrenia in Mainland China

This paper reports the development and validation of the Wuxi version of the Rehabilitation Needs Questionnaire for People with Schizophrenia (PRNQ-S-WX) based on the original Hong Kong version. PRNQ-S-WX was validated by exploratory factor analysis (EFA) using a convenience sample of 250 people with schizophrenia. EFA yielded a 17-factor solution accounting for 81.3 % of the total variance which resulted in a 75-item PRNQ-S-WX. The questionnaire has sound internal consistencies. Its factor structure is similar to the Hong Kong version. Some suggestions for policy, service and research development in mental health in mainland China are made.     

Needs for care of patients with schizophrenia and the consequences for their informal caregivers

Abstract.Background: Schizophrenia as a chronic mental disorder not only has far-reaching consequences for patients, but also for their family members or other informal caregivers. In this study, we investigated whether needs for care of patients with schizophrenia are related to (negative) consequences for their informal caregivers.Method: A total of 287 patients with schizophrenia and their informal caregivers participated in the EPSILON study of schizophrenia in five European countries. Caregiver consequences were measured by the Involvement Evaluation Questionnaire (IEQ) and needs for care by the Camberwell Assessment of Need (CAN).Results: Total number of needs for care as well as specific areas of needs for care of patients appeared to be only weak predictors of caregiver consequences in terms of explained variance.Conclusion: Subjective needs for care as measured by the CAN are not a good indicator for consequences experienced by the informal care system of patients with schizophrenia.     

Burdens and difficulties experienced by caregivers of children and adolescents with schizophrenia-spectrum disorders: a qualitative study

Aim: The purpose of this qualitative study was to investigate the burdens and difficulties associated with the experience of caring for youth with schizophrenia‐spectrum disorders. Methods: Ten caregivers participated in a modified version of the Knowledge about Schizophrenia Illness interview. Results: The most common areas of general difficulties reported by caregivers were emotional burdens and the everyday practical demands and sacrifices required in caring for their dependents. Results also suggested high levels of burden for caregivers concerning difficulties with mental health services. Conclusion: Additional work is needed to learn more about the challenges that caregivers of youth with schizophrenia‐spectrum disorders are facing, as well as to develop empirically based strategies for helping these caregivers and their dependents.     

Effects of a psychoeducational intervention program on the attitudes and health perceptions of relatives of patients with schizophrenia

Background  In recent years there has been increased interest in the role played by families in the treatment of patients with schizophrenia. Some family interventions may significantly reduce clinical difficulties and may have a positive impact, both emotionally and economically. The aim of this study is to assess the efficacy of a family psychoeducational program in changing attitude and health perceptions in relatives of patients with schizophrenia. Methods  Sample: 45 relatives, key caregivers of patients with schizophrenia seen at a public mental health outpatient centre in Arica (Chile). Instruments  Attitudes of Relatives toward Schizophrenia Questionnaire and General Health Questionnaire SF-36. Procedure  The sample was randomly divided into a control group, in which caregivers received the usual treatment (a monthly interview with a psychiatric nurse), and an experimental group, which participated in a family psychoeducational intervention program in addition to the usual treatment. Medication of patients remained unchanged in both groups. Results  The psychoeducational program was effective in modifying caregivers’ attitudes. However, it had no effect on their health perceptions. Conclusions  This family psychoeducational treatment program modifies the negative attitudes of relatives towards schizophrenia. However, programs of this kind may not improve health problems; alternatively, their effects may only be seen in the long term.     

A comparative study of caregivers’ perceptions of health-care needs and burden of patients with bipolar affective disorder and schizophrenia

Abstract

Background: Although many studies in schizophrenia have evaluated health-care needs, there is a lack of data on the needs of patients with bipolar affective disorder (BPAD), with only occasional studies evaluating them, and no study has evaluated the relationship of health-care needs of patients with caregiver's burden. Aim: To study the relationship of caregiver's burden and needs of patients as perceived by caregivers of patients with BPAD and schizophrenia. Method: Caregivers of patients with BPAD and schizophrenia were assessed using the Camberwell Assessment of Needs – Research version (CAN-R) and Supplementary Needs Assessment Scale (SNAS), the Family Burden Interview schedule (FBI) and the Involvement Evaluation Questionnaire (IEQ). Results: Mean total needs of patients on CAN-R were 7.54 (SD 3.59) and 7.58 (SD 4.24) for BPAD and schizophrenia respectively. Mean total needs for SNAS were 7.24 (SD 3.67) and 7.68 (SD 5.02) for BPAD and schizophrenia groups, respectively. Total objective and subjective burden as assessed on FBI was significantly more for the schizophrenia group. Caregivers of patients with BPAD perceived significantly less disruption of routine family activities and lower impact on the mental health of others. On IEQ, the mean score on the domain of supervision was significantly higher for the BPAD group. In the schizophrenia group, positive correlations were seen between the total number of unmet and total (met and unmet) needs and certain aspects of burden, but no such correlations emerged in the BPAD group. Conclusion: There is no correlation between number of needs and burden in the BPAD group; however, in the schizophrenia group the number of needs correlated with the perceived burden. Accordingly, orienting services to address needs of patients with schizophrenia can lead to reduction in burden among caregivers.     

Examining the cognitive model of caregiving – A structural equation modelling approach

The study tests assumptions from the “cognitive model of caregiving” (Kuipers et al., 2010), which aims to inform interventions for carers of people with psychoses. The sample comprised 61 relatives of patients with schizophrenia. Standardized psychological assessments were conducted twice within 6 months including Involvement Evaluation Questionnaire (IEQ-EU), a short form of the Symptom Checklist 90-R (SCL K9), the Family Questionnaire (FQ), scales measuring control attributions of the Illness Perception Questionnaire for Schizophrenia (IPQS-R) and emotions toward the ill relative. Structural equation modelling was used to analyse data. We identified two pathways: (a) from “attributing control to relatives” to distress, intermediated by anxiety for the patient and emotional overinvolvement (EOI), and (b) from “attribution control to patient” to distress, intermediated by anger about the patient and criticism. The model provided a good fit to the data and was successfully replicated at a second point in time. We were able to find supporting evidence for a cognitive model of caregiving. Control attributions and emotions of informal caregivers are important when interventions are planned reducing expressed emotion and burden of caregivers.     

Caring for people with depression or with schizophrenia: Are the consequences different?

Attention to caregiver consequences has been mainly restricted to caregivers of patients with schizophrenia. The few studies done in depression were conducted on small samples and/or with non-validated instruments. Caregiver consequences in depression and schizophrenia were measured with the validated Involvement Evaluation Questionnaire (IEQ). IEQ scores of caregivers of 252 mainly outpatients with depression and caregivers of 151 mainly outpatients with schizophrenia were compared. IEQ scores were quite similar for depression and schizophrenia. Caregivers of patients with schizophrenia worry more and have more nursing tasks; in case of depression caregivers experience more tension between spouses. In case of many consequences caregivers live close to a patient who has more acute symptoms. They have more additional expenses on behalf of the patient, and report higher distress scores. In case of depression caregivers report less social support, and less coping abilities. Caregiver consequences of depression and schizophrenia are very similar. Differences reflect the context in which caregiving takes place: In schizophrenia mostly elderly mother caring for their ill (adult) child, in depression mostly spouses caring for their partner. Caregivers of patients with depression should be given more attention and support by professionals.     

Relationship between childhood adversity and clinical and cognitive features in schizophrenia

Childhood adversity is associated with elevated risk for a wide range of adult psychiatric disorders, and has significant and sustained negative effects on adult behavioural and social functioning. Elevated rates of childhood adversity have been reported for people with a diagnosis of schizophrenia. The aim of the present study was to assess rates of retrospectively reported childhood adversity among adults with schizophrenia and to examine the relationship between childhood adversity and clinical and cognitive features. Data were available for 408 schizophrenia participants and 267 healthy control participants recruited through the Australian Schizophrenia Research Bank (ASRB). History of childhood adversity was obtained using the Childhood Adversity Questionnaire (CAQ). A five-factor solution was identified from the CAQ. Schizophrenia participants reported experiencing more childhood adversities than controls. In both groups, those reporting childhood adversity were more likely to be female and older. Among participants with schizophrenia, positive symptom severity and fewer years of education were associated with childhood adversity. Lower IQ scores and personality traits were associated with reporting a greater number of childhood adversities and with adversity sub-types of abusive, neglectful and dysfunctional parenting. The rate of childhood adversity reported in this sample was high which suggests greater exposure to adverse childhood events among participants with schizophrenia in comparison with healthy controls. We identified unique groups amongst CAQ items that provided a salient framework from which to investigate the connection between childhood adversity and clinical and cognitive features.     

A little knowledge: Caregiver burden in schizophrenia in Malawi

OBJECTIVE: To determine the relationship between schizophrenia knowledge and burden of care among caregivers of people with schizophrenia in Mzuzu, Malawi. METHOD: We recruited 90 patients and 90 caregivers to a randomized, controlled trial of group caregiver education in schizophrenia. At baseline, we administered the Family Questionnaire, which measures caregivers' knowledge of biomedical and psychosocial aspects of schizophrenia. We measured caregiver burden with the Involvement Evaluation Questionnaire. Using multivariate analysis, we examined the relationship between knowledge and burden, controlling for other patient and caregiver variables. We hypothesised that knowledge and burden would be inversely related. RESULTS: Caregiver burden was associated with knowledge (p = 0.001), but contrary to our hypothesis, greater knowledge was associated with greater burden. CONCLUSION: In this population, knowledge about schizophrenia was associated with higher caregiver burden. This does not prove that knowledge causes burden, but suggests that cultural factors may mediate the relationship between knowledge and burden, and that care is needed when introducing caregiver education in new cultures.     

Predictors of changes in caregiving burden in people with schizophrenia: a 3-year follow-up study in a community mental health service

OBJECTIVE: The aims of this study were to measure changes over 3-years in caregiving burden and emotional distress in relatives of people with schizophrenia and to identify factors predicting the levels of caregiving burden. METHOD: A cohort of 51 caregivers of patients with schizophrenia attending the South-Verona Community Mental Health Service was assessed over 3-years with the Involvement Evaluation Questionnaire, European Version. Predictors of caregiving burden included both caregivers' and patients' characteristics and patterns of carer-patient interaction. RESULTS: Baseline levels of family burden were high in worrying and urging domains. Fifty-one per cent of caregivers experienced significant emotional distress. Both overall burden and emotional distress improved. Higher patients' psychopathology, higher numbers of patient-rated needs, patients' lower global functioning and patients' poorer quality of life were found to be related to the severity of family burden. The only significant predictor of caregivers' burden at follow-up was the baseline level of caregivers' burden itself. CONCLUSION: A policy addressing the caring burden of informal caregivers beyond patients' symptoms reduction should be considered.     

Family impact in intellectual disability, severe mental health disorders and mental health disorders in ID. A comparison

Family impact (or family burden) is a concept born in the field of mental health that has successfully been exported to the ambit of intellectual disability (ID). However, differences in family impact associated with severe mental health disorders (schizophrenia), to ID or to mental health problems in ID should be expected. Seventy-two adults with intellectual disability clients of the Carmen Pardo-Valcarce Foundation's sheltered workshops and vocational employment programmes in Madrid (Spain), 203 adults diagnosed with schizophrenia from four Spanish Community Mental Health Services (Barcelona, Madrid, Granada and Navarra) and 90 adults with mental health problems in ID (MH-ID) from the Parc Sanitari Sant Joan de Déu Health Care Site in Sant Boi de Llobregat, Barcelona (Spain) were asked to participate in the present study along with their main caregivers. Family impact experienced by caregivers was assessed with the ECFOS-II/SOFBI-II scale (Entrevista de Carga Familiar Objetiva y Subjetiva/Objective and Subjective Family Burden Interview). In global terms, results showed that the higher family impact was found between caregivers to people with MH-ID. The interaction of both conditions (ID and mental health problems) results in a higher degree of burden on families than when both conditions are presented separately. There was also an impact in caregivers to people with schizophrenia, this impact being higher than the one detected in caregivers to people with intellectual disability. Needs of caregivers to people with disability should be addressed specifically in order to effectively support families.     

Comorbid personality traits in schizophrenia: prevalence and clinical characteristics

Accumulating evidence suggests high rates of personality disorder (PD) in schizophrenia (Sz), and as such, the implications of PD in this context are beginning to be studied more thoroughly. We examined clinical, cognitive and experiential (i.e., reported childhood adversity) correlates of aberrant personality traits in schizophrenia and healthy controls (HC) as measured by the International Personality Disorder Examination Questionnaire (IPDEQ). Participants were 549 individuals with schizophrenia or schizoaffective disorder, and 572 healthy adults recruited to the Australian Schizophrenia Research Bank (ASRB). Schizophrenia participants were significantly more likely than healthy controls to screen positive for personality disorder across all ICD-10 subtypes, and there was substantial overlap between clusters, with ～33% of Sz participants screening positive for all 3 personality disorder clusters. Among both Sz and HC groups, cluster B personality characteristics were significantly associated with increased suicidal behaviours, lower cognitive performance, and the experience of childhood adversity. In addition, Cluster C personality features were associated with higher overall ratings of affective blunting in schizophrenia, and Cluster A personality features were associated with childhood 'loss' in HC participants only. The cumulative effects of screening positive for more than one personality disorder in Sz was associated with higher likelihood of suicidal behaviour, earlier age of onset of Sz, and poorer cognitive functioning. The results suggest that abnormal co-occurrence of personality traits across DSM-IV clusters is evident in a significant proportion of individuals with schizophrenia, and that these personality features impact significantly on clinical and cognitive characteristics of Sz.     

High Functioning Autism Spectrum Disorders in Adults: Consequences for Primary Caregivers Compared to Schizophrenia and Depression

Primary caregivers experience consequences from being in close contact to a person with autism spectrum disorder (ASD). This study used the Involvement Evaluation Questionnaire to explore the level of consequences of 104 caregivers involved with adults with High Functioning ASD (HF-ASD) and compared these with the consequences reported by caregivers of patients suffering from depression and schizophrenia. Caregivers involved with adults with an HF-ASD experience overall consequences comparable to those involved with patients with depression or schizophrenia. Worrying was the most reported consequence. More tension was experienced by the caregivers of ASD patients, especially by spouses. More care and attention for spouses of adults with an HF-ASD appears to be needed.     

Prevalence and correlates of diabetes in national schizophrenia samples

People with schizophrenia may be at increased risk for Type II diabetes because of the side effects of antipsychotic medication, poorer overall physical health, less healthy lifestyles, and poorer health care. The present study uses data bases collected by the Schizophrenia Patient Outcomes Research Team (PORT) to assess the prevalence and demographic and clinical correlates of diabetes within large populations of persons receiving treatment for schizophrenia. In the Schizophrenia PORT, Medicaid and Medicare data from 1991 and more recent interview data were collected regarding the comorbidity of schizophrenia and diabetes: prevalence, quality of life, physical health, and services utilization and costs. The study found that rates of diagnosed diabetes exceeded general population statistics well before the widespread use of the new antipsychotic drugs. Risk factors for diabetes were similar to those observed in the general population. The linkage of diabetes to poor physical health, medical morbidity, and increased service use and cost requires attention. This study of diabetes in the early 1990s suggests that even before the widespread use of the atypical antipsychotic drugs, diabetes was a major problem for persons with schizophrenia.     

An Update on the Epidemiology of Schizophrenia with a Special Reference to Clinically Important Risk Factors

Schizophrenia is a chronic mental illness which poses a tremendous burden on the families, caregivers and the society. The purpose of this paper is to provide an updated review of the epidemiology of schizophrenia with a special attention to the clinically important risk factors such as drug abuse, hormonal factors and the new advances in genetic research. The authors reviewed the literature with a special focus to the recent papers published from January 1970 to present. The prevalence of schizophrenia varied by ten-fold and the incidence of schizophrenia varied by five-fold among different studies. Significant advances in genetic research and DNA technology have been achieved over the past two decades and suggested substantial genetic etiology of schizophrenia. Extensive studies have been done with many variations in the prevalence, incidence and risk factors of schizophrenia among different studies.     

Rehabilitation of theory of mind deficit in schizophrenia: a pilot study of metacognitive strategies in group treatment

People affected by schizophrenia show major deficits in theory of mind (ToM) and in social cognition. Rehabilitation interventions based on non-social metacognitive functions are most likely to provide successful results.

Social cognition, neurocognition, clinical variables, and community functioning were assessed in 20 people with schizophrenia. Ten people were randomly assigned to a six-month rehabilitation programme based on a metacognitive strategy for a social cognition rehabilitation.

Results suggest that patients would benefit from rehabilitation in terms of their competence in social interactions.     

Burdens and Psychological Health of Family Caregivers of People with Schizophrenia in Two Chinese Metropolitan Cities: Hong Kong and Guangzhou

Family members charged with the care of those suffering from schizophrenia experience considerable stress due to their multiple responsibilities. Research regarding the burdens of caregiving is scant in Hong Kong and China. The present study quantified the association of the duties of caregivers with mental health symptoms in two Asian cities having distinct health care systems (i.e., Hong Kong and Guangzhou, China). Thirty nine caregivers in Hong Kong and 70 caregivers in Guangzhou were recruited from nongovernmental mental health organizations. They were assessed using the Chinese version of the Involvement Evaluation Questionnaire and the General Health Questionnaire. While the Guangzhou family caregivers had a significantly higher burden than the Hong Kong sample, there was no significant difference in the psychological health status of family caregivers in the two cities. Result of correlational analyses, however, revealed high associations between burden of care variables and the psychological health of the caregivers. Findings for the present study have implications regarding the physical and mental health needs of those caring for seriously disturbed relatives.     

Cross-Cultural Adaptation and Validation of the Quality of Life Questionnaire for Caregivers of Patients with Schizophrenia (S-CGQoL) in Latin America

ObjectivesThe aim of this study was to adapt and validate the Schizophrenia Caregiver's Quality of Life Questionnaire (S-CGQoL) for use in the Hispanic-American population from the caregiver's perspective.MethodsA cross-sectional instrumental model was used, with a sample of 253 caregivers of patients suffering of Schizophrenia in Bolivia, Peru and Chile. The psychometric properties of the S-CGQoL were tested through construct validity, reliability and some aspects of external validity. In addition, in order to assess the nature of the different items across the three countries, a Differential Performance Analysis (DPA) was conducted.ResultsA confirmatory factor analysis showed that the scale structure was well correlated to the initial structure of the QoL-MDS. The results confirmed the existence of adequate reliability indicators (α> .70 and ω> .80) and the absence of FIDs supporting the invariance of item calibrations among the three Latin American countries.ConclusionsThe adaptation and validation of the S-CGQoL questionnaire demonstrate adequate psychometric properties to assess the quality of life of caregivers in samples of middle-income countries in Latin America.     

The “Carers’ needs assessment for Schizophrenia”

Objective For the purpose of service planning, an instrument was developed for the systematic assessment of interventions needed by the caregivers of schizophrenia patients. Method The development of this instrument was based on in-depth interviews and focus groups. It consists of 18 areas describing common problems of schizophrenia caregivers. For each of these problem areas several possible interventions are offered. Concurrent validity, inter-rater and retest reliability were tested among 50 caregivers. Results The kappa values for the inter-rater reliability are predominantly excellent (kappa > 0.75). The values for the retest reliability show a wide range between excellent (kappa > 0.75) and fair agreement (kappa 0.40–0.60). The significant correlations found between summary scores of this new instrument and several sub-scales of the Family Problem Questionnaire support the assumption that the concurrent validity is satisfactory. Conclusion These results suggest that this instrument is both valid and reliable.