Systematic review (meta-aggregation) of qualitative studies on the experiences of family members caring for individuals with early psychosis

Abstract

Despite the importance of the role of caregivers of people with psychosis being widely recognized, comprehensive understanding of their experience is limited. A thorough understanding of the experience of caregivers over the journey of the illness, particularly during its early stages, is crucial. Qualitative studies published between 1 January 1949 and 31 January 2018 were obtained from seven databases based on PICo search strategy. Meta-aggregation methodology of the Joanna Briggs Institute (JBI) was adopted to aggregate existing qualitative findings about caregivers’ experiences. Twenty-eight qualitative studies on 635 caregivers and family members were included in the review. Six inter-related categories—‘stigma’, ‘help-seeking’, ‘service encounter’, ‘emotional challenges’, ‘on becoming a caregiver’ and ‘making sense of experience’—were aggregated from 129 themes from the sub-acute stage, the acute stage and the recovery or residual stage. Three statements about caregivers’ experiences of their relative’s first episode of psychosis were synthesized from the findings. Results highlighted the need of incorporating caregiver intervention into the existing services to support the emotional challenges, uncertainty, and stigma-related burden along the caregiving journey.     

Women’s recovery from anorexia nervosa: a systematic review and meta-synthesis of qualitative research

Anorexia nervosa (AN) is a complex and challenging condition and recovery can be a slow and difficult process. Predicting factors remain largely unknown. This paper aims to systematically review qualitative studies which have investigated female service users’ experiences of recovering from AN and carry out a meta-synthesis of the themes they identified. Meta-ethnography was used to select and synthesize the studies. Articles published between 2002 and 2017 were searched in PsycInfo, EMBASE, CINAHL and Medline. Studies were included if they explored recovery from AN using a qualitative methodology. The methodological quality of the studies was systematically and critically appraised. Fourteen studies were selected for inclusion. Common themes reported by participants describe the process of recovery from AN as dealing with a fragmented sense of self, a turning point where insight and commitment to recovery is developed, and, in recovery, a reclamation of self through meaningful relationships, rebuilding identity and self-acceptance. Recovery from AN is experienced as a complex psychological process with many contributing factors. Findings highlight the need to reconsider clinical practice and treatment provision to incorporate the psychological components of self-identity into recovery programs.     

Services in the community for adults with psychosis and intellectual disabilities: a Delphi consultation of professionals' views

Background   There remains a severe lack of evidence on the effectiveness of community services for adults with psychosis and intellectual disabilities (ID). There has been little consensus even of what services should provide for this service user group.
Method   A consultation of multidisciplinary professionals was carried out by using a three-round Delphi exercise. Participants were recruited nationally. They rated their views on the importance of 139 items for the care of adults with psychosis and ID. These included 85 routine service components, 23 service user characteristics for those needing a more intensive service and 31 more intensive service components.
Results   Forty-nine out of 52 participants completed all three rounds of the Delphi consultation. Consensus of opinion (≥80% agreement as essential) was obtained on 18 of the routine service components, nine of the service user characteristics and five of the more intensive service components. The routine service components considered essential can be broadly considered under a need for a focused approach on the service user and their illness (e.g. monitoring of mental state) and the added need to work within the wider context of the service user with psychosis and ID (e.g. access to social, leisure or occupational activities). Five of the more intensive service components were considered to be essential (e.g. can react to a crisis that day). However, the routine service components considered essential already contained many components such as out-of-hours support and crisis plans also relevant to more intensive services.
Conclusion   These findings can be used to develop further the evidence base for services in the community for this user group and to assist in the preparation of much needed service evaluation studies.     

Recovery in Psychosis: A Delphi Study With Experts by Experience

This study aimed to establish consensus about the meaning of recovery among individuals with experience of psychosis. A Delphi approach was utilized to allow a large sample of service users to be anonymously consulted about their views on recovery. Service users were invited to take part in a 3-stage consultation process. A total of 381 participants gave their views on recovery in the main stage of this study, with 100 of these taking part in the final review stage. The final list of statements about recovery included 94 items, which were rated as essential or important by >80% of respondents. These statements covered items which define recovery, factors which help recovery, factors which hinder recovery, and factors which show that someone is recovering. As far as we are aware, it is the first study to identify areas of consensus in relation to definitions of recovery from a service user perspective, which are typically reported to be an idiosyncratic process. Implications and recommendations for clinical practice and future research are discussed.Key words: recovery, schizophrenia, consumer, service user, Delphi method, psychosis     

A systematic review of long-term outcomes of patients with psychosis who received early intervention services

Abstract

Despite convincing evidence of short-term symptom control and functional recovery of patients with psychosis after receiving early intervention (EI) services, little is known about the long-term outcomes of EI for these patients. This review aims to evaluate the effectiveness of EI services in improving long-term outcomes of patients with psychosis. A systematic literature search was conducted on PubMed, PsycINFO, Scopus, Medline, CINAHL, BIOSIS, and EMBASE electronic databases to identify studies that evaluated long-term outcomes of patients with psychosis measured 5 years or beyond after entering the EI service. Of 13,005 articles returned from the search, 14 eligible articles reporting study cohorts from nine EI services in seven countries and regions were identified. Data on study design, patient characteristics, intervention components, and outcomes were extracted and reviewed. Only a few studies reported better longitudinal outcomes for negative symptoms, mortality, employment, and hospitalization in patients received EI services. However, results from cross-sectional measurements provided little evidence for long-term impacts of EI services on clinical and functional outcomes. A dilution effect of benefits over time was also demonstrated in several studies. This review highlights the gap in current EI service provision and suggests possible future directions for service improvement and further research.     

Review of the operational definition for first-episode psychosis

Aim: Given the growing interest in the study of first‐episode psychosis, clinical and research programmes would benefit from a conceptual clarification of how to operationalize ‘first‐episode psychosis’. We review the variety of definitions in use and discuss their relative merits with respect to both clinical (e.g. early treatment) and research (e.g. obtaining meaningfully homogeneous populations) agendas. Methods: We completed a selective review of the literature to investigate how first‐episode psychosis was operationally defined. Results: Operational definitions for ‘first‐episode psychosis’ fall largely into three categories: (i) first treatment contact; (ii) duration of antipsychotic medication use; and (iii) duration of psychosis. Each definitional category contains a number of underlying assumptions that contribute to the strengths and weaknesses of the definition. Conclusions: The term ‘first‐episode psychosis’ as used within clinical and research settings is misleading regardless of which operational definition is used. This term is typically used to refer to individuals early in the course of a psychotic illness or treatment rather than individuals who are truly in the midst of a first ‘episode’ of illness. The alternative of ‘recent‐onset psychosis’ with related definitions based on ‘duration of psychosis’ is proposed. Based on this review, we provide suggestions with regard to the overarching pragmatic consideration of setting up a clinical service that can attract and assemble a population of early psychosis patients for the related purposes of treatment and research.     

Candidate Factors Maintaining Social Anxiety in the Context of Psychotic Experiences: A Systematic Review

Social anxiety is common in psychosis and associated with impaired functioning, poorer quality of life, and higher symptom severity. This study systematically reviewed factors maintaining social anxiety in people with attenuated, transient, or persistent psychotic experiences. Other correlates of social anxiety were also examined. MEDLINE, Embase, CENTRAL, and PsycINFO were searched for relevant literature up to October 19, 2020. Forty-eight articles were eligible for narrative synthesis: 38 cross-sectional studies, 8 prospective studies, 1 uncontrolled trial, and 1 qualitative study. From 12060 participants, the majority was general population (n = 8771), followed by psychosis samples (n = 2532) and those at high risk of psychosis (n = 757). The methodological quality and risk of bias were assessed using the Mixed Methods Appraisal Tool. Ninety percent of studies were rated as high to very-high quality. Poorer quality studies typically failed to adequately control for confounds and provided insufficient information on the measurement validity and reliability. Prominent psychological factors maintaining social anxiety included self-perceptions of stigma and shame. Common correlates of social anxiety included poorer functioning and lower quality of life. In conclusion, stigma and shame could be targeted as a causal mechanism in future interventional studies. The integration of findings from this review lead us to propose a new theoretical model to guide future intervention research.     

CHoice of Outcome In Cbt for psychosEs (CHOICE): The Development of a New Service User�CLed Outcome Measure of CBT for Psychosis

Outcome measures for cognitive behavior therapy for psychosis (CBTp) have been derived from pharmacological studies, focusing on symptom change rather than outcomes such as distress or fulfilment. This study presents the development and psychometric properties of a new outcome measure (CHoice of Outcome In Cbt for psychosEs [CHOICE]), which reflects more strongly the aims of CBTp and the priorities of service users. Service users who had received CBTp participated in focus groups to discuss their outcome priorities, using a topic guide generated by a panel of experts in CBTp. A qualitative thematic analysis was undertaken to reach consensus on themes and generate items. Response scales were constructed for 3 dimensions: severity, satisfaction, and importance. The resulting questionnaire was piloted with service users who had not received CBTp, stratified by service type, ethnicity, and first language to ensure that it was user friendly and applicable prior to CBTp. The psychometric properties of the measure were then examined in a sample of 152 service users. Twenty-four items, and 2 of the dimensions (severity and satisfaction), were retained in the final measure. A factor analysis revealed a single psychological recovery factor interspersed throughout with both CBTp and recovery items. Test-retest reliability, construct validity, and sensitivity to change following CBTp were confirmed. The CHOICE measure is unique in being the first psychometrically adequate service user–led outcome measure of CBTp. It provides the opportunity to examine the evidence base for CBTp with an assessment approach that prioritizes service user definitions of recovery and CBT aims.     

Recovery From Psychosis: A Phenomenological Inquiry

While mainstream psychiatry tends to view psychosis as an enduring and chronic condition, there is growing interest in the possibility of recovery from psychosis. A phenomenological research method was utilized in interviewing 17 individuals who all self-identified as being in recovery from psychosis. The research question was, “What was the lived experience of having a psychosis episode and now being in recovery?” Through thematic analysis, the authors found four major themes and seven subthemes that described the experience of recovery from psychosis. The four major themes included: (i) pre-psychosis childhood traumatic experiences, (ii) the descent into psychosis, (iii) paths to recovery, and (iv) post-recovery challenges. These findings suggest both some potential pathways and barriers toward recovery and transformation from psychosis.     

Measurement and reporting of the duration of untreated psychosis

Aim: The aim of this study was to investigate the demographic, illness and methodological factors associated with mean and median duration of untreated psychosis (DUP). Methods: A systematic review and meta‐analysis of the published studies of DUP and an examination of available DUP distributions. Results: DUP was longer in samples with a higher proportion of patients with schizophrenia and was shorter in samples that included affective psychosis. Sex, age, and the methods of measuring the onset and end‐point of DUP and the type of service in which the studies were performed did not contribute to the heterogeneity of the mean or median DUP values. Mean DUP is significantly prolonged by a small number of patients, and the median DUP is a poor indicator of the rate at which patients present. Conclusions: The DUP of patients with affective and non‐affective psychosis should be examined separately in order to make measures of DUP more meaningful and comparable, and DUP should be reported using more comprehensive measures. We suggest a method of reporting DUP based on the rate of presentation of first‐episode psychosis patients rather than the length of DUP.     

Proportion and predictors of remission and recovery in first-episode psychosis: Systematic review and meta-analysis

BackgroundTo determine the proportion of patients in symptomatic remission and recovery following a first-episode of psychosis (FEP).MethodsA multistep literature search using the Web of Science database, Cochrane Central Register of Reviews, Ovid/PsychINFO, and trial registries from database inception to November 5, 2020, was performed. Cohort studies and randomized control trials (RCT) investigating the proportion of remission and recovery following a FEP were included. Two independent researchers searched, following PRISMA and MOOSE guidelines and using a PROSPERO protocol. We performed meta-analyses regarding the proportion of remission/recovery (symptomatic plus functional outcomes). Heterogeneity was measured employing Q statistics and I² test. To identify potential predictors, meta-regression analyses were conducted, as well as qualitative reporting of studies included in a systematic review. Sensitivity analyses were performed regarding different times of follow-up and type of studies.ResultsOne hundred articles (82 cohorts and 18 RCTs) were included in the meta-analysis. The pooled proportion of symptomatic remission was 54% (95%CI [30, 49–58]) over a mean follow-up period of 43.57 months (SD = 51.82) in 76 studies. After excluding RCT from the sample, the proportion of remission remained similar (55%). The pooled proportion of recovery was 32% (95%CI [27–36]) over a mean follow-up period of 71.85 months (SD = 73.54) in 40 studies. After excluding RCT from the sample, the recovery proportion remained the same. No significant effect of any sociodemographic or clinical predictor was found.ConclusionsHalf of the patients are in symptomatic remission around 4 years after the FEP, while about a third show recovery after 5.5 years.     

Suicide prevention in first episode psychosis: the development of a randomised controlled trial of cognitive therapy for acutely suicidal patients with early psychosis

BACKGROUND: Young people with early psychosis are at particularly high risk of suicide. However, there is evidence that early intervention can reduce this risk. Despite these advances, first episode psychosis patients attending these new services still remain at risk. To address this concern, a program called LifeSPAN was established within the Early Psychosis Prevention and Intervention Centre (EPPIC). The program developed and evaluated a number of suicide prevention strategies within EPPIC and included a cognitively oriented therapy (LifeSPAN therapy) for acutely suicidal patients with psychosis. We describe the development of these interventions in this paper. METHOD: Clinical audit and surveys provided an indication of the prevalence of suicidality among first episode psychosis patients attending EPPIC. Second, staff focus groups and surveys identified gaps in service provision for suicidal young people attending the service. Third, a suicide risk monitoring system was introduced to identify those at highest risk. Finally, patients so identified were referred to and offered LifeSPAN therapy whose effectiveness was evaluated in a randomised controlled trial. RESULTS: Fifty-six suicidal patients with first episode psychosis were randomly assigned to standard clinical care or standard care plus LifeSPAN therapy. Forty-two patients completed the intervention. Clinical ratings and measures of suicidality and risk were assessed before, immediately after the intervention, and 6 months later. Benefits were noted in the treatment group on indirect measures of suicidality, e.g., hopelessness. The treatment group showed a greater average improvement (though not significant) on a measure of suicide ideation. CONCLUSIONS: Early intervention in psychosis for young people reduces the risk of suicide. Augmenting early intervention with a suicide preventative therapy may further reduce this risk.     

Reconnecting: the client experience of recovery from psychosis

PROBLEM: To understand the experience of recovery from psychosis from the consumer/client perspective. METHODS: A naturalistic, qualitative design with an ethnographic method for data analysis. Subjects (N = 10) were interviewed prior to and during the initial year of treatment with clozapine or risperidone. FINDINGS: Participants described recovery from psychosis as a process that started with improvements in their thinking and feeling, and extended to a series of reconnections with their environment. These reconnections icluded staff and family. Thinking moved from being focused on their internal self to a larger world. CONCLUSION: A person's recovery from pschosis involves the entire self, bringing all components of physical, emotional, mental, and spiritual aspects of themselves into their experiences of life.     

Loneliness in psychosis: a systematic review

Purpose

The aim of the review is to understand the relationships between loneliness and related psychological and social factors in individuals with psychosis. Loneliness is poorly understood in people with psychosis. Given the myriad of social challenges facing individuals with psychosis, these findings can inform psychosocial interventions that specifically target loneliness in this vulnerable group.

Methods

We adhered to the PRISMA guidelines and systematically reviewed empirical studies that measured loneliness either as a main outcome or as an associated variable in individuals with psychosis.

Results

A total of ten studies examining loneliness in people diagnosed with a psychotic disorder were examined. Heterogeneity in the assessment of loneliness was found, and there were contradictory findings on the relationship between loneliness and psychotic symptomatology. In individuals with psychosis, loneliness may be influenced by psychological and social factors such as increased depression, psychosis, and anxiety, poor social support, poor quality of life, more severe internalised stigma and perceived discrimination, and low self-esteem.

Conclusions

The relationship between loneliness and psychosis remains poorly understood due to a lack of rigorous studies. Although having strong social relationships is crucial to facilitate recovery from serious mental illness, psychosocial interventions that specifically target loneliness in individuals with psychosis are lacking and sorely needed. Interventions targeting loneliness in those with psychosis will also need to account for additional barriers associated with psychosis (e.g., social skill deficits, impoverished social networks, and negative symptoms).

     

Canadian Studies on the Effectiveness of Community Treatment Orders

Objectives:

Community treatment orders (CTOs) for people with severe mental illnesses are used across most of Canada. It is unclear if they can reduce health service use, or improve clinical and social outcomes. This review summarizes the evidence from studies conducted in Canada.

Method:

A systematic literature search of PubMed and MEDLINE to March 2015 was conducted. Inclusion criteria were quantitative and qualitative studies undertaken in Canada that presented data on the effect of CTOs on outcomes.

Results:

Nine papers from 8 studies were included in the review. Four studies compared health service use before and after compulsory treatment as well as engagement with psychosocial supports. Three were qualitative evaluations of patients, family, or staff and the last was a postal survey of psychiatrists. Hospital readmission rates and days spent in hospital were all reduced following CTO placement, while outpatient attendance and participation in psychiatric services and housing all improved. Family members and clinicians were generally positive about the effect of CTOs but patients were ambivalent. However, the strength of the evidence was limited as many of the studies were small, only one included control subjects, and there was no adjustment for potential confounders using either matching or multivariate analyses. Only 2 qualitative studies included the views of patients and their families.

Conclusions:

The evidence base for the use of CTOs in Canada is limited and this lack of Canadian research is in marked contrast to other countries where there have been large studies that have used randomized or matched control subjects. Their use should be kept under review.     

The national policy reforms for mental health services and the story of early intervention services in the United Kingdom

In this review, we summarize and review reforms to the mental health service in the United Kingdom from 1999 to the present. Our analysis is based on government documents describing the reforms and providing guidelines for their implementation. In addition, we summarize prospective studies of psychosis from the first episode and early treatment studies on the basis of existing systematic reviews. The UK mental health reforms have attracted major government funding and have been used to commission specialized ("functional") community teams for people with severe mental illness. The reforms include changes to services for first-episode psychosis, which have attracted considerable consumer support. The UK service reforms are continuing, with the aim of providing services fit for the 21st century.     

Brain morphologic changes in early stages of psychosis: Implications for clinical application and early intervention

To date, a large number of magnetic resonance imaging (MRI) studies have been conducted in schizophrenia, which generally demonstrate gray matter reduction, predominantly in the frontal and temporo‐limbic regions, as well as gross brain abnormalities (e.g., a deviated sulcogyral pattern). Although the causes as well as timing and course of these findings remain elusive, these morphologic changes (especially gross brain abnormalities and medial temporal lobe atrophy) are likely present at illness onset, possibly reflecting early neurodevelopmental abnormalities. In addition, longitudinal MRI studies suggest that patients with schizophrenia and related psychoses also have progressive gray matter reduction during the transition period from prodrome to overt psychosis, as well as initial periods after psychosis onset, while such changes may become almost stable in the chronic stage. These active brain changes during the early phases seem to be relevant to the development of clinical symptoms in a region‐specific manner (e.g., superior temporal gyrus atrophy and positive psychotic symptoms), but may be at least partly ameliorated by antipsychotic medication. Recently, increasing evidence from MRI findings in individuals at risk for developing psychosis has suggested that those who subsequently develop psychosis have baseline brain changes, which could be at least partly predictive of later transition into psychosis. In this article, we selectively review previous MRI findings during the course of psychosis and also refer to the possible clinical applicability of these neuroimaging research findings, especially in the diagnosis of schizophrenia and early intervention for psychosis.