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.

Caregivers consequences of care among patients with eating disorders, depression or schizophrenia.

BACKGROUND: The consequences of caring for a person with a mental illness can impose a substantial burden. Few studies have compared this burden among caregivers of patients with eating disorders and other mental illnesses. The objective of this study was to compare caregiver consequences in eating disorders (ED) with caregiver consequences in depression and schizophrenia, assessed with the same instrument, the Involvement Evaluation Questionnaire (IEQ). Another aim was to identify factors that may predict these consequences. METHODS: We conducted a cross-sectional study involving 251 caregivers of ED patients; 252 caregivers of patients with depression; and 151 caregivers of patients with schizophrenia. Caregivers completed the Involvement Evaluation Questionnaire EU Version (IEQ-EU). Descriptive statistics, ANOVA, and Chi-square were applied to examine the inter-variable relationships. Consequences- indexes were also computed. RESULTS: In all samples, worrying was the most commonly reported consequence of caregiving. Predictive variables for a high level of caregiver burden included being a mother or partner of the person being cared for (p = <.01), and being a caregiver of a patient with ED. CONCLUSIONS: The burden of caregiving is higher among caregivers of patients with eating disorders patients than among caregivers of patients with depression or schizophrenia. Our findings suggest that caregivers of patients with an ED could benefit from providing adequate assessment and support.

Bridging the science-to-service gap in schizophrenia care in the Netherlands: the Schizophrenia Quality Improvement Collaborative.

OBJECTIVE: Many patients with schizophrenia are not treated in line with evidence-based guidelines. This study examines the large-scale implementation of the National Multidisciplinary Guideline for schizophrenia in the Netherlands. DESIGN: /st> Observational, prospective study, with repeated measurement. SETTING: Thirty mental healthcare teams in different regions of the Netherlands. PARTICIPANTS: Three hundred and fifty-nine clinicians with different professional backgrounds and 1489 patients suffering from schizophrenia. INTERVENTION(S): Six evidence-based interventions for schizophrenia were implemented, in the context of a quality improvement collaborative: assertive community treatment (ACT) or its adapted version functional assertive community treatment (FACT), cognitive behavioural therapy, psycho-education, family interventions, individual placement support and pharmacotherapy. MAIN OUTCOME MEASURE(S): Professional performance, social functioning and relapse rates. RESULTS: Improved professional performance, in line with guidelines. Availability of (F)ACT improved from 23 to 60%. Individual Placement Support improved from 20 to 53%. Complete care plans were composed for 38% of the patients and routine outcome monitoring was introduced in most teams. Social functioning improved slightly (HoNOS mean: from 6.2 to 5.6). Relapse rates did not improve during the course of the study. CONCLUSIONS: An intensive implementation programme can result in an improved delivery of evidence-based care, increased continuity of care and slightly improved outcomes for individuals with schizophrenia. More rigorous research designs have to confirm these findings.

Impact of psychosis on Portuguese caregivers: a cross-cultural exploration of burden, distress, positive aspects and clinical-functional correlates.

PURPOSE: Further cross-cultural comparisons are needed on caregiving consequences of chronic psychotic disorders. The EPSILON study (European Psychiatric Services: Inputs Linked to Outcome Domains and Needs) involved five European countries, but not Portugal. We aimed to analyse the impact of severe mental illness in a Portuguese sample and to provide support to comparisons with some of the EPSILON results, focusing on the north-European Dutch centre. METHODS: We studied 108 caregiver-patient dyads by a consecutive sampling of people with schizophrenia-spectrum disorders in psychiatric outpatient services. Relatives' assessments included the Involvement Evaluation Questionnaire, European version (IEQ), the 12-item General Health Questionnaire (GHQ-12); the loss, stigma and positive aspects' subscales of the Experience of Caregiving Inventory, and the Social Network and Family Coping Questionnaires. Patients were assessed regarding symptoms, disability and global functioning. RESULTS: Caregiving rewards and negative consequences co-existed. On the IEQ, 49.1% reported negative consequences and rank order of domain scores was worrying > urging > tension > supervision. More than one-third of caregivers were psychologically distressed according to GHQ screenings. Involvement Evaluation Questionnaire scores were correlated with caregivers' distress, stigma, loss, patient's involvement and other ways of coping, and patients' variables. Some of these failed to be included in a regression model. CONCLUSIONS: Many of these Portuguese caregivers were at risk regarding burden and psychological distress. In comparison with other European samples, caregiving arrangements and assessments were typical of Mediterranean countries, as Italy or Spain. All IEQ scores were significantly higher than those in the Netherlands. On account of small numbers, caution is needed in the interpretation of associations.

Caregiving in severe mental illness: the psychometric properties of the Involvement Evaluation Questionnaire in Portugal.

BACKGROUND: Despite the achievements of previous research, caregiving assessments in severe mental illness should be crossculturally validated in order to define risk groups or to evaluate family work. This study reports on the psychometric properties of the European version of the Involvement Evaluation Questionnaire (IEQ-EU) in Portugal. METHODS: A Portuguese translation of the IEQ-EU was developed according to the 'European Psychiatric Services: Inputs Linked to Outcome Domains and Needs' (EPSILON) group guidelines. We then studied 194 caregivers who were related to patients with schizophrenia spectrum disorders in psychiatric outpatient services. All relatives were assessed using the IEQ-EU. In order to describe the corresponding patients' sample, the majority (n = 162) was evaluated with the World Health Organization Disability Assessment Schedule (WHO-DAS II); 108 patients were also assessed with the Brief Psychiatric Rating Scale (BPRS) and the Global Assessment of Functioning (GAF). RESULTS: The factor structure of the Portuguese version of the questionnaire was similar to the original; internal consistency was good, with Cronbach's α ranging from 0.71 to 0.87 in the IEQ-EU scales (total score and domains: tension, supervision, worrying, urging); test-retest reliability yielded intraclass correlation coefficients (ICCs) from 0.80 to 0.94, concerning the same scores. Ecological validity was confirmed. Most caregiving consequences were reported on the worrying domain of the IEQ-EU. CONCLUSIONS: Validity and reliability of the Portuguese IEQ-EU translation were established. Specifically the four IEQ-EU subscale domains seem to be valid in Portugal.

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.

Family caregiving in depression: impact on caregivers' daily life, distress, and help seeking.

BACKGROUND: Attention to caregiving consequences has been mainly restricted to schizophrenia, although studies suggest that relatives of depressed patients also experience considerable distress. These studies, however, were conducted on small samples or with nonvalidated instruments. In our study, the caregiving consequences of 260 spouses and relatives of depressed patients were assessed with a well-validated 31-item questionnaire, the Involvement Evaluation Questionnaire (IEQ). METHODS: The IEQ was mailed to spouses and relatives of patients with major depression, dysthymic disorder, or other depressive disorders. Other instruments used were the Ways of Coping Checklist (WCC), a Dutch Social Support Questionnaire, and the Zung Self-rating Depression Scale (SDS). RESULTS: About 25-50% of caregivers worried about the patient's general health, treatment, safety, and future. They had to urge the patient to undertake activities, or took over tasks. There were relational strains, and they felt burdened, especially when the patient was in an acute phase. Caregivers often felt distressed and had to visit a (mental) health practitioner. Also, children were affected; caregivers reported high levels of difficult behavior, loss of appetite, sleeplessness, less playing, and less attention at school. Caregiving consequences occur less often than in schizophrenia, but the patterns are quite comparable. CONCLUSIONS: Caregiving consequences in depression occur frequently and cause distress in caregivers and patient's children. Attention should be paid to support relatives and spouses of depressed patients. Special attention should be paid to patient's children.

People with schizophrenia in five countries: conceptual similarities and intercultural differences in family caregiving.

The European Psychiatric Services: Inputs Linked to Outcomes and Needs (EPSILON) study was a EU BIOMED-2-funded comparative, cross-national, cross-sectional study aimed (1) to produce standardized versions of five key research instruments in five languages, and (2) to compare the characteristics, needs, and life qualities of people with schizophrenia and their caregivers in these five countries. One of the key instruments was the Involvement Evaluation Questionnaire (IEQ), an instrument to assess caregiving consequences. In this article, the intercultural validity of the IEQ is described. It was concluded that the IEQ covers the same caregiving domains in all five countries: interpersonal tension, worrying, urging, and supervision. Differences in score levels between countries were found. When adjusted for variables known to correlate with IEQ scores (patient, caregiver, and relationship), these differences still persisted. It could not be determined how far the remaining variation could be explained by site-level characteristics, because only limited site-level data had been collected. This means that researchers must still resolve the question of whether levels of caregiver consequences that cannot be explained by the data presented here are caused by cultural factors or by differences in mental health care provision. As long as cultural bias cannot be ruled out, researchers are advised to compose their own national norm groups and use these as a local standard.