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1.  The African, Caribbean and European (ACE) Pathways to Care study: a qualitative exploration of similarities and differences between African-origin, Caribbean-origin and European-origin groups in pathways to care for psychosis 
BMJ Open  2015;5(1):e006562.
This paper reports on a qualitative exploration of the reasons for differences in pathways to care and duration of untreated psychosis (DUP) in the African, Caribbean and European (ACE) Pathways to Care study from the perspective of respondents to the study and their families.
Ontario, Canada.
Thirty-four participants in total. Twenty-five young people who had experienced a first episode of psychosis and nine family members. Participants were part of the ACE Pathways to Care study.
We implemented six focus groups. Furthermore, we implemented four in-depth interviews with two African-origin young women, one Caribbean-origin woman, and one European-origin woman with lived experience of psychosis.
Factors that influenced help-seeking delays across the three groups were: personal awareness of symptoms, family members’ knowledge of psychotic symptoms and knowledge of mental health services. Youth and their family members described how stigma played a key role in pathways to care by stopping them from asking for help. The way in which stigma operated on the three groups’ members, from feeling ashamed to feeling guilty for their mental illnesses, helped to explain differences in DUP between the groups. Guilt feelings emerged as a prominent theme among members from the African and Caribbean groups and it was not discussed in the European focus group. Delay in entering into first-episode psychosis programmes was also influenced by the stigma perceived by young people in healthcare settings. This had an impact on the therapeutic relationships, disclosure of symptoms and overall trust in the healthcare system.
The findings of this paper suggest that stigma, especially internalised stigma, may operate in different ways in European-origin, African-origin and Caribbean-origin groups. These findings could inform the development of more equitable services for people in early stages of psychosis.
PMCID: PMC4298103  PMID: 25588783
2.  Which pathways to psychiatric care lead to earlier treatment and a shorter duration of first-episode psychosis? 
BMC Psychiatry  2014;14:72.
The pathways to care in a first onset psychosis are diverse and may influence the chances of early treatment and therefore the duration of untreated psychosis. We test which pathways to care are associated with a delay in receiving treament and a longer duration of untreated psychosis (DUP).
In a population based survey, we interviewed 480 people with first episode psychosis aged 18 to 64 years over a 2-year period. Information from structured interview and case files provided DSM-IV diagnostic, clinical, and demographic information. Consecutive contacts in the care pathway were mapped using the World Health Organisation’s Encounter Form. Using information from all sources, DUP was defined as time from symptom onset to first treatment with antipsychotic medication.
The most common first contacts were primary care physicians (35.2%), emergency rooms in general hospital settings (21.3%), and criminal justice agencies (25.4%). In multivariate regression models, compared to DUP for those first in contact with primary care, DUP was shortest for first encounters with psychiatric emergency clinics (RR = 0.4, 95% CI: 0.23-0.71) and longest for first encounters with criminal justice agencies (RR = 1.61, 95% CI: 1–2.58). Older age was associated with a longer DUP (RR = 1.01 per year, 95% CI: 1–1.04). A shorter DUP was associated with a diagnosis of mania and affective psychoses-NOS compared with schizophrenia (RR = 0.22, 95% CI: 0.14-0.35; RR = 0.18, 95% CI: 0.06-0.54, respectively), for Black compared with White ethnicity (RR = 0.52, 95% CI: 0.34-0.82), and for each close person in the social network (RR = 0.9, 95% CI: 0.84-0.96).
To further reduce DUP, better links are needed between primary care, emergency rooms, criminal justice and psychiatric services.
PMCID: PMC3984674  PMID: 24620939
Psychosis; Early treatment; Anti-psychotics; Pathways; Schizophrenia & DSMIV diagnoses
3.  Schizophrenia and Violence: Systematic Review and Meta-Analysis 
PLoS Medicine  2009;6(8):e1000120.
Seena Fazel and colleagues investigate the association between schizophrenia and other psychoses and violence and violent offending, and show that the increased risk appears to be partly mediated by substance abuse comorbidity.
Although expert opinion has asserted that there is an increased risk of violence in individuals with schizophrenia and other psychoses, there is substantial heterogeneity between studies reporting risk of violence, and uncertainty over the causes of this heterogeneity. We undertook a systematic review of studies that report on associations between violence and schizophrenia and other psychoses. In addition, we conducted a systematic review of investigations that reported on risk of homicide in individuals with schizophrenia and other psychoses.
Methods and Findings
Bibliographic databases and reference lists were searched from 1970 to February 2009 for studies that reported on risks of interpersonal violence and/or violent criminality in individuals with schizophrenia and other psychoses compared with general population samples. These data were meta-analysed and odds ratios (ORs) were pooled using random-effects models. Ten demographic and clinical variables were extracted from each study to test for any observed heterogeneity in the risk estimates. We identified 20 individual studies reporting data from 18,423 individuals with schizophrenia and other psychoses. In men, ORs for the comparison of violence in those with schizophrenia and other psychoses with those without mental disorders varied from 1 to 7 with substantial heterogeneity (I2 = 86%). In women, ORs ranged from 4 to 29 with substantial heterogeneity (I2 = 85%). The effect of comorbid substance abuse was marked with the random-effects ORs of 2.1 (95% confidence interval [CI] 1.7–2.7) without comorbidity, and an OR of 8.9 (95% CI 5.4–14.7) with comorbidity (p<0.001 on metaregression). Risk estimates of violence in individuals with substance abuse (but without psychosis) were similar to those in individuals with psychosis with substance abuse comorbidity, and higher than all studies with psychosis irrespective of comorbidity. Choice of outcome measure, whether the sample was diagnosed with schizophrenia or with nonschizophrenic psychoses, study location, or study period were not significantly associated with risk estimates on subgroup or metaregression analysis. Further research is necessary to establish whether longitudinal designs were associated with lower risk estimates. The risk for homicide was increased in individuals with psychosis (with and without comorbid substance abuse) compared with general population controls (random-effects OR = 19.5, 95% CI 14.7–25.8).
Schizophrenia and other psychoses are associated with violence and violent offending, particularly homicide. However, most of the excess risk appears to be mediated by substance abuse comorbidity. The risk in these patients with comorbidity is similar to that for substance abuse without psychosis. Public health strategies for violence reduction could consider focusing on the primary and secondary prevention of substance abuse.
Please see later in the article for Editors' Summary
Editors' Summary
Schizophrenia is a lifelong, severe psychotic condition. One in 100 people will have at least one episode of schizophrenia during their lifetime. Symptoms include delusions (for example, patients believe that someone is plotting against them) and hallucinations (hearing or seeing things that are not there). In men, schizophrenia usually starts in the late teens or early 20s; women tend to develop schizophrenia a little later. The causes of schizophrenia include genetic predisposition, obstetric complications, illegal drug use (substance abuse), and experiencing traumatic life events. The condition can be treated with a combination of antipsychotic drugs and supportive therapy; hospitalization may be necessary in very serious cases to prevent self harm. Many people with schizophrenia improve sufficiently after treatment to lead satisfying lives although some patients need lifelong support and supervision.
Why Was This Study Done?
Some people believe that schizophrenia and other psychoses are associated with violence, a perception that is often reinforced by news reports and that contributes to the stigma associated with mental illness. However, mental health advocacy groups and many mental health clinicians argue that it is a myth that people with mental health problems are violent. Several large, population-based studies have examined this disputed relationship. But, although some studies found no increased risk of violence among patients with schizophrenia compared with the general population, others found a marked increase in violent offending in patients with schizophrenia. Here, the researchers try to resolve this variation (“heterogeneity”) in the conclusions reached in different studies by doing a systematic review (a study that uses predefined search criteria to identify all the research on a specific topic) and a meta-analysis (a statistical method for combining the results of several studies) of the literature on associations between violence and schizophrenia and other psychoses. They also explored the relationship between substance abuse and violence.
What Did the Researchers Do and Find?
By systematically searching bibliographic databases and reference lists, the researchers identified 20 studies that compared the risk of violence in people with schizophrenia and other psychoses and the risk of violence in the general population. They then used a “random effects model” (a statistical technique that allows for heterogeneity between studies) to investigate the association between schizophrenia and violence. For men with schizophrenia or other psychoses, the pooled odds ratio (OR) from the relevant studies (which showed moderate heterogeneity) was 4.7, which was reduced to 3.8 once adjustment was made for socio-economic factors. That is, a man with schizophrenia was four to five times as likely to commit a violent act as a man in the general population. For women, the equivalent pooled OR was 8.2 but there was a much greater variation between the ORs in the individual studies than in the studies that involved men. The researchers then used “meta-regression” to investigate the heterogeneity between the studies. This analysis suggested that none of the study characteristics examined apart from co-occurring substance abuse could have caused the variation between the studies. Importantly the authors found that risk estimates of violence in people with substance abuse but no psychosis were similar to those in people with substance abuse and psychosis and higher than those in people with psychosis alone. Finally, although people with schizophrenia were nearly 20 times more likely to have committed murder than people in the general population, only one in 300 people with schizophrenia had killed someone, a similar risk to that seen in people with substance abuse.
What Do These Findings Mean?
These findings indicate that schizophrenia and other psychoses are associated with violence but that the association is strongest in people with substance abuse and most of the excess risk of violence associated with schizophrenia and other psychoses is mediated by substance abuse. However, the increased risk in patients with comorbidity was similar to that in substance abuse without psychosis. A potential implication of this finding is that violence reduction strategies that focus on preventing substance abuse among both the general population and among people with psychoses might be more successful than strategies that solely target people with mental illnesses. However, the quality of the individual studies included in this meta-analysis limits the strength of its conclusions and more research into the association between schizophrenia, substance abuse, and violence would assist in clarifying how and if strategies for violence reduction are changed.
Additional Information
Please access these Web sites via the online version of this summary at
The US National Institute of Mental Health provides information about schizophrenia (in English and Spanish)
The UK National Health Service Choices Web site has information for patients and carers about schizophrenia
The MedlinePlus Encyclopedia has a page on schizophrenia; MedlinePlus provides links to other sources of information on schizophrenia and on psychotic disorders (in English and Spanish)
The Schizophrenia and Related Disorders Alliance of America provides information and support for people with schizophrenia and their families
The time to change Web site provides information about an English campaign to reduce the stigma associated with mental illness
The Schizophrenia Research Forum provides updated research news and commentaries for the scientific community
PMCID: PMC2718581  PMID: 19668362
4.  Comparison of high and low intensity contact between secondary and primary care to detect people at ultra-high risk for psychosis: study protocol for a theory-based, cluster randomized controlled trial 
Trials  2013;14:222.
The early detection and referral to specialized services of young people at ultra-high risk (UHR) for psychosis may reduce the duration of untreated psychosis and, therefore, improve prognosis. General practitioners (GPs) are usually the healthcare professionals contacted first on the help-seeking pathway of these individuals.
This is a cluster randomized controlled trial (cRCT) of primary care practices in Cambridgeshire and Peterborough, UK. Practices are randomly allocated into two groups in order to establish which is the most effective and cost-effective way to identify people at UHR for psychosis. One group will receive postal information about the local early intervention in psychosis service, including how to identify young people who may be in the early stages of a psychotic illness. The second group will receive the same information plus an additional, ongoing theory-based educational intervention with dedicated liaison practitioners to train clinical staff at each site. The primary outcome of this trial is count data over a 2-year period: the yield - number of UHR for psychosis referrals to a specialist early intervention in psychosis service - per primary care practice.
There is little guidance on the essential components of effective and cost-effective educational interventions in primary mental health care. Furthermore, no study has demonstrated an effect of a theory-based intervention to help GPs identify young people at UHR for psychosis. This study protocol is underpinned by a robust scientific rationale that intends to address these limitations.
Trial registration
Current Controlled Trials ISRCTN70185866
PMCID: PMC3721989  PMID: 23866815
Early intervention; Primary care; Psychosis; Cluster randomized controlled trial; Ultra high-risk
5.  Demographic, Socio-Environmental, and Substance-Related Predictors of Duration of Untreated Psychosis (DUP) 
Schizophrenia research  2013;148(0):93-98.
Longer duration of untreated psychosis (DUP) is associated with poorer early-course and long-term outcomes, and is a target of early detection and intervention efforts. Given the paucity of research on childhood and adolescent stressors (e.g., maltreatment and neighborhood disorder) as potential predictors of DUP, limited research on premorbid substance use as a determinant of DUP, and inconclusive findings on the association between DUP and neurocognition, we conducted three sets of analyses to address these issues. Mode of onset of psychosis was also considered, given its established role as an illness-level correlate of DUP.
We rigorously assessed DUP and other pertinent variables in 180 predominantly African American, low-income, and socially disadvantaged first-episode psychosis patients hospitalized in five psychiatric units.
Mode of onset of psychosis, prior incarceration, and the level of childhood/adolescent maltreatment were all significant independent predictors of DUP. Regarding premorbid substance use, having ever used cannabis and the amount of premorbid alcohol use were significantly associated with DUP. None of the seven neurocognitive domains were even modestly, or clinically meaningfully, associated with DUP.
These and other findings on DUP may be informative for early detection and intervention services. For example, such services might benefit from special outreach to criminal justice settings and disadvantaged neighborhoods, and to young people likely to have a history of childhood/adolescent maltreatment and gradually developing psychotic symptoms.
PMCID: PMC3732564  PMID: 23746486
childhood maltreatment; duration of untreated psychosis; first-episode psychosis; psychosis; schizophrenia; treatment delay
6.  Pathways to Care: Duration of Untreated Psychosis from Karachi, Pakistan 
PLoS ONE  2009;4(10):e7409.
Substantial amount of time is lost before initiation of treatment in Schizophrenia. The delay in treatment is labelled as Duration of Untreated Psychosis (DUP). Most of these estimates come from western countries, where health systems are relatively better developed. There is dearth of information on pathway to care from developing countries.
Methods and Results
Patients with ICD-10 based diagnosis of Schizophrenia were enrolled by convenient method of sampling. The pathway to care was explored through a semi-structured questionnaire. Onset, course and symptoms of psychosis were assessed using Interview for the Retrospective Assessment of the Onset of Schizophrenia (IRAOS). Ethical approval of the project was taken from The Aga Khan University, Ethics Review Committee. Of the enrolled 93 subjects, 55 (59%) were males and 38 (41%) were females. In our sample, 1.56 mean (median, 2) attempts were made prior to successful help seeking. The duration of untreated psychosis was 14.8 months (St. Deviation; 29.4). DUP was 16.8 months (St. Deviation; 34.9) for males and 11.8 months (St. Deviation; 18.9) for females. In the pathway to care, psychiatrists featured prominently as initial care providers. In the first attempt at help-seeking, 43% patients were initially taken to psychiatrists. After the initial consultation, 45% were prescribed psychotropic medication while 7% were hospitalized. Only 9% subjects were given the diagnosis of schizophrenia initially. When participants were inquired about the reasons for delay, 29% reported financial difficulties as the barrier to care. Positive symptoms of psychosis were present in 57% subjects while negative symptoms were present in 30% subjects. There was a statistically significant difference (Chi-square; 7.928, df: 1, Sig 0.005) between DUP and the positive and negative symptoms category.
In the absence of well developed primary care health system in Pakistan, majority of patients present to psychiatrists as a first contact. DUP, as a measurement of help seeking behaviour, tends to be shorter with positive symptoms of Schizophrenia. Substantial amount of time is lost due to non recognition of disease and subsequently, inadequate treatment. Secondary prevention strategies should focus on families, which play an important role in the treatment-seeking process of psychotic patients.
PMCID: PMC2756621  PMID: 19823577
7.  Reducing the duration of untreated psychosis and its impact in the U.S.: the STEP-ED study 
BMC Psychiatry  2014;14(1):335.
Early intervention services for psychotic disorders optimally interlock strategies to deliver: (i) Early Detection (ED) to shorten the time between onset of psychotic symptoms and effective treatment (i.e. Duration of Untreated Psychosis, DUP); and (ii) comprehensive intervention during the subsequent 2 to 5 years. In the latter category, are teams (‘First-episode Services’ or FES) that integrate several empirically supported treatments and adapt their delivery to younger patients and caregivers. There is an urgent need to hasten access to established FES in the U.S. Despite improved outcomes for those in treatment, these FES routinely engage patients a year or more after psychosis onset. The Scandinavian TIPS study was able to effectively reduce DUP in a defined geographic catchment. The guiding questions for this study are: can a U.S. adaptation of the TIPS approach to ED substantially reduce DUP and improve outcomes beyond existing FES?
The primary aim is to determine whether ED can reduce DUP in the US, as compared to usual detection. ED will be implemented by one FES (STEP) based in southern Connecticut, and usual detection efforts will continue at a comparable FES (PREPR) serving the greater Boston metropolitan area. The secondary aim is to determine whether DUP reduction can improve presentation, engagement and early outcomes in FES care. A quasi-experimental design will compare the impact of ED on DUP at STEP compared to PREPR over 3 successive campaign years. The campaign will deploy 3 components that seek to transform pathways to care in 8 towns surrounding STEP. Social marketing approaches will inform a public education campaign to enable rapid and effective help-seeking behavior. Professional outreach and detailing to a wide variety of care providers, including those in the healthcare, educational and judicial sectors, will facilitate rapid redirection of appropriate patients to STEP. Finally, performance improvement measures within STEP will hasten engagement upon referral.
STEP-ED will test an ED campaign adapted to heterogeneous U.S. pathways to care while also improving our understanding of these pathways and their impact on early outcomes.
Trial registration NCT02069925. Registered 20 February 2014.
PMCID: PMC4262386  PMID: 25471062
Early intervention; First-episode services; Duration of untreated psychosis; Schizophrenia; First-episode psychosis; Public health campaigns; Health communication campaigns
8.  Family-Level Predictors and Correlates of the Duration of Untreated Psychosis in African American First-Episode Patients 
Schizophrenia research  2009;115(2-3):338-345.
Little is known about how family-level factors are associated with duration of untreated psychosis (DUP), especially in ethnic/racial minority groups, such as African Americans. This study involved African American first-episode patients and their family members who initiated evaluation and treatment for them. It was hypothesized that a longer DUP would be predicted by family members' endorsement of: (1) less knowledge about schizophrenia, (2) greater perceptions of stigma, (3) lower levels of insight, (4) fewer family strengths, (5) more limited family coping capacity, and (6) lower levels of caregiver strain.
From a sample of 109 patients, 42 African American patients with family-level data were included. Cox proportional hazards models quantified associations between family-level predictors and DUP, and analyses controlled for effects of three previously determined patient-level predictors of DUP—mode of onset of psychosis, living with family members versus alone or with others, and living above versus below the federal poverty level.
The median DUP was 24.5 weeks. Greater family strengths and a better family coping capacity were associated with a shorter DUP, whereas higher insight among informants and greater level of perceived caregiver strain were associated with a longer DUP.
Whereas family strengths and coping likely account for a significant portion of variability in DUP, both insight and caregiver strain probably evolve as a consequence of DUP. Efforts to strengthen families and tap into existing strengths of families in specific cultural groups would likely enhance early treatment-seeking for psychotic disorders.
PMCID: PMC2783750  PMID: 19833482
Caregiver strain; Duration of untreated psychosis; Family functioning; First-episode psychosis; Schizophrenia; Treatment delay
9.  A taboo within a stigma? a qualitative study of managing incontinence with people with dementia living at home 
BMC Geriatrics  2011;11:75.
Incontinence in people with dementia is one of the factors associated with the decision to move to a care home. Managing incontinence adds to carer burden and has been reported by family carers as more difficult to manage than behavioural symptoms. Active management strategies have been reported to be associated with less carer depression. The purpose of this study was to investigate carers' perceptions of the range of incontinence problems they helped their relative with and the strategies they employed to manage these.
Family carers of people with dementia living in their own homes were recruited through primary care, specialist community mental health services and voluntary organisations. Qualitative semi structured interviews were conducted either face to face or by telephone and thematically analysed.
Thirty two carers were interviewed. They described a range of problems from supporting the person to remain independent in toileting, through to dealing with inappropriate behaviours, to containing and managing incontinence. All carers actively used problem solving strategies but sometimes these were not acceptable or understood by the person with dementia, particularly as the dementia progressed. Most carers reported protecting the person's dignity by not seeking health professionals help often until the point of a crisis. Once the carer has decided to seek help the responses from health professionals can be less than helpful, and carers report local health service policies on access to continence products to be inconsistent and often inappropriate to their circumstances. A few carers reported strategies for managing toileting and incontinence that have the potential for distress and harm to the person with dementia.
Primary care professionals could be more proactive in enquiry, repeated over time, about toileting and incontinence problems and in giving advice and information to reduce crisis and problems.
PMCID: PMC3250935  PMID: 22081876
10.  Psychotic Illness in First-Time Mothers with No Previous Psychiatric Hospitalizations: A Population-Based Study 
PLoS Medicine  2009;6(2):e1000013.
Psychotic illness following childbirth is a relatively rare but severe condition with unexplained etiology. The aim of this study was to investigate the impact of maternal background characteristics and obstetric factors on the risk of postpartum psychosis, specifically among mothers with no previous psychiatric hospitalizations.
Methods and Findings
We investigated incidence rates and potential maternal and obstetric risk factors of psychoses after childbirth in a national cohort of women who were first-time mothers from 1983 through 2000 (n = 745,596). Proportional hazard regression models were used to estimate relative risks of psychoses during and after the first 90 d postpartum, among mothers without any previous psychiatric hospitalization and among all mothers. Within 90 d after delivery, 892 women (1.2 per 1,000 births; 4.84 per 1,000 person-years) were hospitalized due to psychoses and 436 of these (0.6 per 1,000 births; 2.38 per 1,000 person-years) had not previously been hospitalized for any psychiatric disorder. During follow-up after the 90 d postpartum period, the corresponding incidence rates per 1,000 person-years were reduced to 0.65 for all women and 0.49 for women not previously hospitalized. During (but not after) the first 90 d postpartum the risk of psychoses among women without any previous psychiatric hospitalization was independently affected by: maternal age (35 y or older versus 19 y or younger; hazard ratio 2.4, 95% confidence interval [CI] 1.2 to 4.7); high birth weight (≥ 4,500 g; hazard ratio 0.3, 95% CI 0.1 to 1.0); and diabetes (hazard ratio 0).
The incidence of psychotic illness peaks immediately following a first childbirth, and almost 50% of the cases are women without any previous psychiatric hospitalization. High maternal age increases the risk while diabetes and high birth weight are associated with reduced risk of first-onset psychoses, distinctly during the postpartum period.
Unnur Valdimarsdóttir and colleagues studied the risk factors for psychiatric illness following childbirth and found that, for women who had never previously been hospitalized for a psychiatric illness, the risk of mental illness was greatly increased following childbirth.
Editors' Summary
The first cries of a new life echo around the delivery suite: this is a time of great joy for most women. Yet, in the following days and weeks (the postpartum period), up to 80% of new mothers experience some sort of mental disturbance. Usually, this is the “baby blues,” a normal reaction to childbirth that is characterized by short-lived mood swings or postnatal depression. However, about one in 1,000 women develop postpartum psychosis, a serious mental disorder that needs immediate medical attention. Postpartum psychosis usually develops suddenly in the first 2–3 weeks after delivery and, like other forms of psychosis, is characterized by a loss of contact with reality. Women with postpartum psychosis may have false ideas about current events and about themselves (delusions) and see and hear things that are not there (hallucinations). They sometimes stop eating or sleeping and may become anxious and agitated. In the worst cases, they can have suicidal thoughts or even threaten their baby's life. Treatment for postpartum psychosis includes antipsychotic drugs, counseling, and hospital admission if the woman is a danger to herself or others.
Why Was This Study Done?
Women with a personal or family history of psychosis have an increased risk of developing postpartum psychosis, but what causes this disorder is unknown. The rapid changes in hormone levels that occur after delivery are likely to be involved—but might social circumstances, stress, other illnesses, or the birth itself also affect whether a woman develops postpartum psychosis? If additional risk factors for postpartum psychosis could be identified, it might be possible to prevent some cases of this serious mental disorder. In this study, the researchers investigate the incidence rate (the rate at which new cases occur in a population) and risk factors for psychotic illnesses diagnosed among first-time mothers registered in the Swedish Medical Birth Registry between 1983 and 2000.
What Did the Researchers Do and Find?
The researchers identified three-quarters of a million first-time mothers and, from the Swedish Hospital Discharge Registry, found that 892 of these women (1.2 per 1,000 births) had been admitted to hospital because of psychosis within 90 days of giving birth. Put another way, the incidence rate of psychosis over the first 90 days postpartum in this population was 4.84 per 1,000 person-years. Almost half of the women who developed postpartum psychosis had not been previously admitted to hospital for any psychiatric disorder. Among this subset of women, the incidence rate of postpartum psychosis was highest during the first month after delivery but dropped to less than a tenth of this initial rate after 90 days postpartum. Furthermore, the risk of developing psychosis during the first 90 days postpartum (but not after) increased with age—women older than 35 years were more than twice as likely to develop psychosis than those aged 19 years or less—but was reduced in women who had large babies or who had diabetes. Many other factors (including smoking and not living with the infant's father) did not affect the risk of psychosis during the first 90 days postpartum in these women.
What Do These Findings Mean?
These findings indicate that the occurrence of psychotic illness severe enough to require hospitalization peaks shortly after giving birth for the first time, even in women with no previous psychiatric illness. Indeed, women with no history of mental disorders account for almost half the women admitted to hospital for postpartum psychosis, at least in Sweden. The timing of the peak of postpartum psychosis supports the idea that either giving birth or the hormonal changes that occur shortly after may trigger the development of psychosis, and the findings that maternal diabetes and high infant birth weight reduce the risk of postpartum psychosis whereas increasing maternal age increases the risk provide new clues about the causes of postpartum psychosis. Most importantly, however, these findings highlight the importance of carefully monitoring women for psychosis during the first month after delivery.
Additional Information.
Please access these Web sites via the online version of this summary at
This paper is further discussed in a PLoS Medicine Perspective by Phillipa Hay
The MedlinePlus Encyclopedia contains a page on MedlinePlus encyclopedia psychosis (in English and Spanish); MedlinePlus also provides links to information on psychotic disorders
The UK National Health Service Direct Health encyclopedia has information on psychosis and on postnatal depression
Mental Health America has a fact sheet on postpartum disorders
PMCID: PMC2637917  PMID: 19209952
11.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
PMCID: PMC3484131  PMID: 23118618
12.  Disease Biomarkers in Cerebrospinal Fluid of Patients with First-Onset Psychosis 
PLoS Medicine  2006;3(11):e428.
Psychosis is a severe mental condition that is characterized by a loss of contact with reality and is typically associated with hallucinations and delusional beliefs. There are numerous psychiatric conditions that present with psychotic symptoms, most importantly schizophrenia, bipolar affective disorder, and some forms of severe depression referred to as psychotic depression. The pathological mechanisms resulting in psychotic symptoms are not understood, nor is it understood whether the various psychotic illnesses are the result of similar biochemical disturbances. The identification of biological markers (so-called biomarkers) of psychosis is a fundamental step towards a better understanding of the pathogenesis of psychosis and holds the potential for more objective testing methods.
Methods and Findings
Surface-enhanced laser desorption ionization mass spectrometry was employed to profile proteins and peptides in a total of 179 cerebrospinal fluid samples (58 schizophrenia patients, 16 patients with depression, five patients with obsessive-compulsive disorder, ten patients with Alzheimer disease, and 90 controls). Our results show a highly significant differential distribution of samples from healthy volunteers away from drug-naïve patients with first-onset paranoid schizophrenia. The key alterations were the up-regulation of a 40-amino acid VGF-derived peptide, the down-regulation of transthyretin at ~4 kDa, and a peptide cluster at ~6,800–7,300 Da (which is likely to be influenced by the doubly charged ions of the transthyretin protein cluster). These schizophrenia-specific protein/peptide changes were replicated in an independent sample set. Both experiments achieved a specificity of 95% and a sensitivity of 80% or 88% in the initial study and in a subsequent validation study, respectively.
Our results suggest that the application of modern proteomics techniques, particularly mass spectrometric approaches, holds the potential to advance the understanding of the biochemical basis of psychiatric disorders and may in turn allow for the development of diagnostics and improved therapeutics. Further studies are required to validate the clinical effectiveness and disease specificity of the identified biomarkers.
Protein profiles from 179 cerebrospinal fluid samples yield differences between patients with psychotic disorders and healthy volunteers, suggesting that such biomarkers could assist in the early diagnosis of mental illness.
Editors' Summary
Psychosis is an abnormal mental state characterized by loss of contact with reality, often associated with hallucinations, delusions, personality changes, and disorganized thinking. Psychotic symptoms occur in several psychiatric disorders, including schizophrenia, bipolar disorder, and psychotic depression. It is not clear what the underlying biological abnormalities in the brain are, and whether they are the same for the different psychotic illnesses. The hope is that recent advances in brain imaging and systematic characterization of genetic activity and protein composition in the brain might help to shed light on mental diseases, eventually leading to better diagnosis, treatment, and possibly even prevention.
Why Was This Study Done?
This study was carried out in order to search for biomarkers for psychosis and schizophrenia by comparing the protein composition in the cerebrospinal fluid (the clear body fluid that surrounds the brain and the spinal cord) of patients with different psychotic disorders and normal individuals who served as controls.
What Did the Researchers Do and Find?
The researchers used a technique called surface-enhanced laser desorption ionization mass spectrometry, which allows a comprehensive analysis of the protein composition of a particular sample, on a total of 179 cerebrospinal fluid samples. The samples came from 90 individuals without mental illness who served as controls, 58 people with schizophrenia who were very recently diagnosed and had not yet taken any medication, 16 patients with depression, five patients with obsessive-compulsive disorder, and ten patients with Alzheimer disease. All of the patients gave their informed consent to participate in the study. The researchers found that samples from treatment-naïve schizophrenic patients had a number of characteristic changes compared with samples from control individuals, and that those changes were not found in the patients with other mental illnesses. The researchers then wanted to test whether they would see the same pattern in a separate set of patients with schizophrenia versus controls, which turned out to be the case. Two of the changes in the cerebrospinal fluid that were associated with schizophrenia, namely higher levels of parts of a protein called VGF and lower levels of a protein called transthyretin, were also found in post-mortem brain samples of patients with schizophrenia compared with samples from controls. Lower levels of transthyretin were also found in serum (blood) of first-onset drug naïve schizophrenia patients.
What Do These Findings Mean?
These results suggest that this approach has the potential to find biomarkers for psychosis and, possibly, schizophrenia that might help in the understanding of the molecular basis for these conditions. If shown, in future studies, to be directly involved in causing the disease symptoms, they would be important targets for treatment and prevention efforts, and might also be useful for diagnostic purposes. Overall, there are promising examples, such as this study, suggesting that new molecular techniques can yield fresh insights into psychiatric illnesses such as schizophrenia and other psychotic disorders. Additional studies are needed to confirm the findings presented here and to address many open questions, and would seem well justified given these results.
Additional Information.
Please access these Web sites via the online version of this summary at
MedlinePlus entries on psychosis and schizophrenia
The National Alliance for Research on Schizophrenia and Depression
The National Alliance for the Mentally Ill
The Schizophrenia Society of Canada
Wikipedia entries on psychosis and schizophrenia (note that Wikipedia is an online encyclopedia that anyone can edit)
PMCID: PMC1630717  PMID: 17090210
13.  Effects of labeling and interpersonal contact upon attitudes towards schizophrenia: implications for reducing mental illness stigma in urban China 
As mental illness stigma contributes to poor outcomes for schizophrenia in China, locating strategies to reduce public stigma is imperative. It is currently unknown whether diagnostic labeling and contact with different help-seeking sources increase or decrease public stigma in China. Further, it remains unresolved whether prior personal contact acts to reduce stigma in this context. Advancing understanding of these processes may facilitate stigma-reduction strategies.
We administered an experimental vignette randomly assigning one of four labeling conditions to respondents to assess social distance towards a psychotic vignette individual in a sample of 160 Northern, urban Chinese community respondents.
As expected, respondents given a “non-psychiatric, indigenous label” + “lay help-seeking” condition endorsed the least social distance. Unexpectedly, the labeling condition with a “psychiatric diagnostic label” + “lay help-seeking” condition elicited the greatest social distance. Unlike Western studies, personal contact did not independently decrease community stigma. However, prior contact reduced social distance to a greater extent in the labeling condition with a “non-psychiatric, indigenous label” + “lay help-seeking” condition when compared with all other labeling conditions.
The results indicate that cultural idioms do provide some protection from stigma, but only among respondents who are already familiar with what mental illness is. Our finding that the condition that depicted untreated psychosis elicited the greatest amount of stigma, while the “treated psychosis” condition was viewed relatively benignly in China, suggests that improved access to mental health services in urban China has the potential to decrease public stigma via labeling mechanisms.
PMCID: PMC3697873  PMID: 22075964
Stigma; Culture; China; Schizophrenia; Attitudes
14.  Stigma and treatment delay in first-episode psychosis: a grounded theory study 
A longer duration of untreated psychosis (DUP) is associated with greater morbidity in the early course of schizophrenia. This formative, hypothesis-generating study explored the effects of stigma, as perceived by family members, on DUP.
Qualitative interviews were conducted with 12 African American family members directly involved in treatment initiation for a relative with first-episode psychosis. Data analysis relied on a grounded theory approach. A testable model informed by constructs of Link's modified labelling theory was developed.
Four main themes were identified, including: (i) society's beliefs about mental illnesses; (ii) families' beliefs about mental illnesses; (iii) fear of the label of a mental illness; and (iv) a raised threshold for the initiation of treatment. A grounded theory model was developed as a schematic representation of the themes and subthemes uncovered in the family members' narratives.
The findings suggest that due to fear of the official label of a mental illness, certain coping mechanisms may be adopted by families, which may result in a raised threshold for treatment initiation, and ultimately treatment delay. If the relationships within the grounded theory model are confirmed by further qualitative and quantitative research, public educational programs could be developed with the aim of reducing this threshold, ultimately decreasing DUP.
PMCID: PMC2860376  PMID: 20199480
duration of untreated psychosis; first-episode psychosis; schizophrenia; stigma
15.  A single blind randomized controlled trial of cognitive behavioural therapy in a help-seeking population with an At Risk Mental State for psychosis: the Dutch Early Detection and Intervention Evaluation (EDIE-NL) trial 
Trials  2010;11:30.
Psychotic disorders are a serious mental health problem. Intervention before the onset of psychosis might result in delaying the onset, reducing the impact or even preventing the first episode of psychosis. This study explores the effectiveness of cognitive behavioural therapy (CBT) in targeting cognitive biases that are involved in the formation of delusions in persons with an ultra-high risk for developing psychosis. A single blind randomised controlled trial compares CBT with treatment as usual in preventing or delaying the onset of psychosis.
All help seeking patients aged 14 to 35 years referred to the mental health services in three regions in the Netherlands are pre-screened with the Prodromal Questionnaire during a period of two years. Patients with a score of 18 or more on the sub-clinical positive symptoms items (45 items in total) will be assessed with the Comprehensive Assessment of At Risk Mental State (CAARMS). In a different pathway to care model all referrals from the mental health services in Amsterdam to the specialized psychosis clinic of the Academic Medical Centre in Amsterdam are also assessed with the CAARMS. The primary outcome is the transition rate to psychosis according to the CAARMS-criteria. Group differences will be analysed with chi-square tests and survival analyses.
CBT is a highly tolerated treatment. The psycho-educational CBT approach may prove to be a successful strategy since most people with an At Risk Mental State (ARMS) are distressed by odd disturbing experiences. Giving explanations for and normalising these experiences may reduce the arousal (distress) and therefore may prevent people from developing a catastrophic delusional explanation for their odd experiences and thus prevent them from developing psychosis.
Screening the entire help-seeking population referred to community mental health services with a two-stage strategy, as compared with traditional referral to a specialist clinical psychosis centre, might detect more ultra-high-risk (UHR) patients. This type of screening could be implemented in mental health care as routine screening. The trial is registered at Current Controlled trials as trial number ISRCTN21353122.
PMCID: PMC2853533  PMID: 20307268
16.  Stigma in families of individuals in early stages of psychotic illness: family stigma and early psychosis 
Early intervention in psychiatry  2009;3(2):108-115.
Stigma is pervasive among families of individuals with psychotic disorders and includes both general and ‘associative’ stigma – that is, the process by which a person is stigmatized by virtue of association with another stigmatized individual. These forms of stigma may present a barrier to help seeking. However, little is known about stigma in the early stages of evolving psychotic disorder.
Family members of 11 individuals at clinical high risk and of nine patients with recent-onset psychosis were evaluated for generalized and associative stigma using the Opinions about Mental Illness (modified) and the Family Experiences Interview Schedule.
In this small study, the level of stigma was low, as families endorsed many supportive statements, for example, patients should be encouraged to vote, patients want to work, mental illness should be protected legally as a disability and parity should exist in insurance coverage. Families also endorsed that both talking and a belief in God and prayer can help someone get better. Only ethnic minority families of individuals with recent-onset psychosis endorsed a sense of shame and need to conceal the patient's illness.
This preliminary study suggests that family stigma is low in the early stages of psychotic disorder, a finding that requires further investigation in a larger and more representative sample. This may be an opportune time to engage young people and families, so as to reduce duration of untreated illness. Ethnic differences in stigma, if replicated, highlight the need for cultural sensitivity in engaging individuals and their families in treatment.
PMCID: PMC2748954  PMID: 19777087
ethnicity; families; prodrome; psychosis; stigma
17.  The Prevalence of Mental Disorders among the Homeless in Western Countries: Systematic Review and Meta-Regression Analysis 
PLoS Medicine  2008;5(12):e225.
There are well over a million homeless people in Western Europe and North America, but reliable estimates of the prevalence of major mental disorders among this population are lacking. We undertook a systematic review of surveys of such disorders in homeless people.
Methods and Findings
We searched for surveys of the prevalence of psychotic illness, major depression, alcohol and drug dependence, and personality disorder that were based on interviews of samples of unselected homeless people. We searched bibliographic indexes, scanned reference lists, and corresponded with authors. We explored potential sources of any observed heterogeneity in the estimates by meta-regression analysis, including geographical region, sample size, and diagnostic method. Twenty-nine eligible surveys provided estimates obtained from 5,684 homeless individuals from seven countries. Substantial heterogeneity was observed in prevalence estimates for mental disorders among the studies (all Cochran's χ2 significant at p < 0.001 and all I2 > 85%). The most common mental disorders were alcohol dependence, which ranged from 8.1% to 58.5%, and drug dependence, which ranged from 4.5% to 54.2%. For psychotic illness, the prevalence ranged from 2.8% to 42.3%, with similar findings for major depression. The prevalence of alcohol dependence was found to have increased over recent decades.
Homeless people in Western countries are substantially more likely to have alcohol and drug dependence than the age-matched general population in those countries, and the prevalences of psychotic illnesses and personality disorders are higher. Models of psychiatric and social care that can best meet these mental health needs requires further investigation.
Seena Fazel and colleagues show, through a systematic review and meta-regression analysis, that homeless people in Western countries have a higher prevalence of alcohol and drug dependence and mental disorders.
Editors' Summary
In 2007, it was estimated that there were more than 1 million homeless people worldwide. The true magnitude of the problem is difficult to estimate with no internationally agreed definition for homelessness and with the different approaches taken by countries and organizations in counting homeless people.
What we do know is that this is a diverse group of people who have poorer physical and mental health than the general population, leading to premature death. We also know that addressing barriers to health care and behavioral interventions for alcohol and drug dependence and mental health problems in this population can lead to lasting health gains.
Why Was This Study Done?
Health care for the homeless is a major public health challenge. Public policy and health service development depend on reliable estimates of the prevalence (how common a particular characteristic, e.g., a disease, is in a specific group of people or a specific population) of illnesses. By using statistical methods, the researchers aimed to provide a quantitative synthesis of the available evidence on mental health problems in this population and explore reasons for the differences in reported prevalence rates of serious mental disorders between studies, neither which have been done previously.
What Did the Researchers Do and Find?
The researchers systematically searched for surveys that estimated the prevalence of mental disorders in homeless people. Their final sample of 29 studies included a total of 5,684 homeless individuals based in the US, UK, mainland Europe, and Australia. Their main finding was that the prevalences of serious mental disorders were raised compared with expected rates in the general population, and many orders of magnitude higher than age-matched community estimates for psychosis, alcohol dependence, and drug dependence. In addition, the analysis found that alcohol and drug dependence is the most common mental disorder in the homeless (compared to psychosis, depression, and personality disorder). Also, the prevalence estimates of psychosis were found to be as high as those for depression. This latter finding contrasts with community estimates and other “at risk” populations such as prisoners and refugees, where depression is more common. The authors found substantial variation in the prevalence rates for these various disorders, and demonstrated that participation rates were associated with these variations for psychosis, depression, and personality disorder and that studies conducted more recently reported higher rates of alcohol dependence.
What Do These Findings Mean?
This review raises a number of implications for health services for the homeless and research for this population. First, traditional models of service delivery, which focus on those with severe mental illness, may not meet the mental health needs of most homeless people who suffer from alcohol and drug dependence and personality disorder. Second, an integrated approach to treatment may be beneficial and should take into account mental health, alcohol and drug abuse, welfare, and housing needs. Finally, future research should include studies that follow a group over time to help us better understand the risks and pathways into (and out of) homelessness, particularly in non-Western populations where there appears to be a paucity of information.
Additional Information.
Please access these Web sites via the online version of this summary at
This study is further discussed in a PLoS Medicine Perspective by Helen Herrman
“How can health care systems effectively deal with the major health care needs of homeless people?” is a WHO initiative aimed at tackling the health care needs of homeless people
FEANTSA, the European Federation of National Organizations Working with the Homeless, is an umbrella of not-for-profit organizations that participate in or contribute to the fight against homelessness in Europe
The National Alliance to End Homelessness is a nonpartisan, mission-driven organization committed to preventing and ending homelessness in the US
Information and good practice solutions for the homelessness service sector in Australia can be found on the National Homelessness Information Clearinghouse Web site
Homeless Link is the national membership organization for frontline homelessness agencies in England with a mission to catalyze an end to homelessness
Homeless Man Speaks provides an “on-the-street” perspective
PMCID: PMC2592351  PMID: 19053169
18.  Don’t turn your back on the symptoms of psychosis: a proof-of-principle, quasi-experimental public health trial to reduce the duration of untreated psychosis in Birmingham, UK 
BMC Psychiatry  2013;13:67.
Reducing the duration of untreated psychosis (DUP) is an aspiration of international guidelines for first episode psychosis; however, public health initiatives have met with mixed results. Systematic reviews suggest that greater focus on the sources of delay within care pathways, (which will vary between healthcare settings) is needed to achieve sustainable reductions in DUP (BJP 198: 256-263; 2011).
A quasi-experimental trial, comparing a targeted intervention area with a ‘detection as usual’ area in the same city. A proof-of–principle trial, no a priori assumptions are made regarding effect size; key outcome will be an estimate of the potential effect size for a definitive trial. DUP and number of new cases will be collected over an 18-month period in target and control areas and compared; historical data on DUP collected in both areas over the previous three years, will serve as a benchmark. The intervention will focus on reducing two significant DUP component delays within the overall care pathway: delays within the mental health service and help-seeking delay.
This pragmatic trial will be the first to target known delays within the care pathway for those with a first episode of psychosis. If successful, this will provide a generalizable methodology that can be implemented in a variety of healthcare contexts with differing sources of delay.
Trial registration
PMCID: PMC3599688  PMID: 23432935
Public mental health campaign; First-episode psychosis; Early detection; Duration of untreated psychosis; Youth mental health
19.  The Key to Reducing Duration of Untreated First Psychosis: Information Campaigns 
Schizophrenia Bulletin  2007;34(3):466-472.
The TIPS early intervention program reduced the duration of untreated psychosis (DUP) in first-episode schizophrenia from 16 to 5 weeks in a health care sector using a combination of easy access detection teams (DTs) and a massive information campaign (IC) about the signs and symptoms of psychosis. This study reports what happens to DUP and presenting schizophrenia in the same health care sector when the IC is stopped. Methods: Using an historical control design, we compare 2 cohorts of patients with first-episode Diagnostic and Statistical Manual for Mental Disorders, Fourth Edition, non-affective psychosis at admission to treatment. The first cohort (N = 108) was recruited from January 1997 to December 2000, using an IC to raise awareness about recognizing psychosis to the public, the schools, and to general practitioners. The second cohort (N = 75) was recruited from January 2002 to June 2004 with no-IC. Easy access DTs were available to both cohorts. Results: In the no-IC period, DUP increased back up to 15 weeks (median) and fewer patients came to clinical attention through the DTs. No-IC patients were diagnosed less frequently with schizophreniform disorder, more Positive and Negative Syndrome Scale positive and total symptoms, and poorer Global Assessment of Functioning (symptom) Scale scores. Conclusions: Intensive education campaigns toward the general public, the schools, and the primary health care services appear to be an important and necessary part of an early detection program. When such a campaign was stopped, there was a clear regressive change in help-seeking behavior with an increase in DUP and baseline symptoms.
PMCID: PMC2632428  PMID: 17905788
first-episode psychosis; early intervention; schizophrenia
20.  Psychiatric stigma and discrimination in South Africa: perspectives from key stakeholders 
BMC Psychiatry  2014;14:191.
Stigma and discrimination against people with mental illness remain barriers to help seeking and full recovery for people in need of mental health services. Yet there is scarce research investigating the experiences of psychiatric stigma on mental health service users in low- and middle-income countries (LMICs). The aim of this study was therefore to explore the experiences of psychiatric stigma by service users in order to inform interventions to reduce such stigma and discrimination in one LMIC, namely South Africa.
Participants comprised a total of 77 adults aged above 18 years, made up of service providers including professional nurses (10), lay counsellors (20), auxiliary social workers (2); and service users (45).
Psychiatric stigma was found to be perpetuated by family members, friends, employers, community members and health care providers. Causes of psychiatric stigma identified included misconceptions about mental illness often leading to delays in help-seeking. Experiencing psychiatric stigma was reported to worsen the health of service users and impede their capacity to lead and recover a normal life.
Media campaigns and interventions to reduce stigma should be designed to address specific stigmatizing behaviours among specific segments of the population. Counselling of families, caregivers and service users should include how to deal with experienced and internalized stigma.
PMCID: PMC4099203  PMID: 24996420
Psychiatric stigma and discrimination; Mental health; Service users; Health care service providers
21.  Qualitative process evaluation of a problem-solving guided self-help manual for family carers of young people with first-episode psychosis 
BMC Psychiatry  2014;14:168.
Caring for a young person experiencing first-episode psychosis is challenging and can affect carers’ well-being adversely. While some face-to-face approaches have achieved promising outcomes, they are costly and resource-intensive to provide, restricting their reach and penetration. Guided self-help in book-form (or bibliotherapy) is an alternative but untested approach in these circumstances. In this study, we aimed to evaluate carers’ beliefs about the usefulness of problem-solving guided self-help manual for primary carers of young people with first-episode psychosis.
A qualitative process evaluation nested in a randomised controlled trial, conducted across two early intervention psychosis services in Melbourne, Australia. 124 carers were randomised to problem-solving guided self-help intervention or treatment as usual. We also undertook a qualitative process evaluation, using individual interviews, with a random sample of 24 of the intervention group. A thematic analysis of the qualitative data was undertaken, which is the subject of this paper. Interviews were conducted between January 2009 and September 2010.
Three themes were abstracted from the data, reflecting carers’ beliefs about the usefulness of the manual: promoting carers’ well-being, increasing carers’ understanding of and support for the young person with first-episode psychosis, and accessibility and delivery modes of the programme.
This process evaluation highlights that guided self-help is useful in informing and supporting carers of affected young people. While there is scope for broadening the delivery modes, the approach is easy to use and accessible, and can be used as a cost-effective adjunct to standard support provided to carers, by community mental health nurses and other clinicians.
Trial registration
PMCID: PMC4064108  PMID: 24906392
Bibliotherapy; Clinicians; First-episode psychosis; Guided self-help; Nurses; Primary carers; Problem-solving; Process evaluation; Qualitative research; Randomised controlled trial; Self-help manual
22.  Being in a process of transition to psychosis, as narrated by adults with psychotic illnesses acutely admitted to hospital 
Accessible summary
Early intervention to prevent and reduce new episodes of psychosis involves patients, relatives and mental health personnel recognizing the early signs of psychosis.
Twelve participants with psychotic illnesses narrated how they experienced becoming psychotic before they were admitted to acute psychiatric wards.
The results of this study demonstrate that participants and their close others who sensed, understood and articulated experienced changes as signs of psychosis established a dialogue with mental health personnel and initiated treatment and care. Participants who did not perceive the experienced changes as signs of psychosis articulated the experienced changes as an awareness of a poor health condition and illness. These participants, who had no other people to advocate for them, appeared to experience poor communication and coercion during intervention.
To assist in improving early interventions for psychosis, this study explored how adult people narrated their experience of becoming psychotic, and how contact with mental health personnel was established. Narrative interviews were conducted with 12 participants with psychotic illnesses recruited from acute psychiatric wards. The interviews were content analysed. Participants described being in a process of transition to psychosis as follows: experiencing changes as well-known signs of psychosis, experiencing sudden unexpected changes as signs of psychosis and experiencing unidentified changes as signs of illness. Our results show that participants and their close others who knew the signs of psychosis established a dialogue with mental health personnel and were better equipped to prevent and mitigate the psychosis. Our results demonstrate that participants who did not perceive the signs of psychosis and did not have other people to advocate for them were at risk for delayed treatment, poor communication and coercive interventions. Furthermore, participants who did not know the signs of psychosis perceived these changes as deterioration in their health and awareness of illness. We suggest that participants' experiential knowledge of transitioning to psychosis and an awareness of illness can be used to improve the communication during interventions for psychosis.
PMCID: PMC4263308  PMID: 24784573
awareness of illness; content analysis; early intervention; narrative interview; signs of psychosis; transition to psychosis
23.  Duration of untreated psychosis and clinical outcomes of first-episode schizophrenia: a 4-year follow-up study 
The relationship between the duration of untreated psychosis and long-term clinical outcomes remains uncertain.
Prospectively assess the relationship of the duration of untreated psychosis on clinical outcomes in a sample of individuals with first-onset schizophrenia treated at the Pudong Mental Health Center from January 2007 to December 2008.
Information about general health, psychotic symptoms and social functioning were collected using the Brief Psychiatric Rating Scale (BPRS), Treatment Emergent Symptom Scale (TESS), Morningside Rehabilitation Status Scale (MRSS), and Social Disability Screening Schedule (SDSS) at baseline and in June 2010 and June 2012.
The 43 individuals with first-episode schizophrenia participating in the study were divided into short (<24 weeks) and long (>24weeks) duration of untreated psychosis (DUP) groups. The mean (sd) duration of follow-up was 1197 (401) days in the short DUP group and 1412 (306) days in the long DUP group (t=9.98, p=0.055). Despite less prominent psychotic symptoms at the time of first diagnosis among patients who had a long DUP compared to those with a short DUP (BPRS mean scores, 42.5 [8.4] v. 50.0 [10.6], t=2.42, p=0.0210) and a similar number of clinical relapses (based on positive symptoms assessed by the BPRS), patients with a long DUP were more likely to require hospitalization at the time of first diagnosis (52% [11/21] v. 9% [2/22], χ2=9.55, p=0.002) and more likely to require re-hospitalization during the first two years of treatment (67% [14/21] v. 32% [7/22], χ2=5.22, p=0.022). Moreover, after four years of routine treatment, despite a similar severity of positive symptoms, patients who had had a long DUP prior to initiating treatment had significantly poorer social functioning than those who had had a short DUP (SDSS mean scores, 7.0 [5.2] v. 3.4 [4.9], t=2.20, p=0.035).
These findings show that despite having a similar level of psychotic symptoms – as measured by the BPRS – compared to patients with a short DUP, patients with schizophrenia who have a long DUP prior to initial treatment have poorer long-term social functioning. This confirms the clinical importance of the early recognition and treatment of individuals with chronic psychotic conditions.
PMCID: PMC4118001  PMID: 25114480
schizophrenia; antipsychotics; treatment; follow-up studies; China
24.  Experiences of Living and Dying With COPD 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at:
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-Term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at:
For more information on the economic analysis, please visit the PATH website:
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website:
Objective of Analysis
The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic obstructive pulmonary disease (COPD), informal caregivers (“carers”), and health care providers—from the point of diagnosis, through daily living and exacerbation episodes, to the end of life.
Clinical Need and Target Population
Qualitative empirical studies (from social sciences, clinical, and related fields) can offer important information about how patients experience their condition. This exploration of the qualitative literature offers insights into patients’ perspectives on COPD, their needs, and how interventions might affect their experiences. The experiences of caregivers are also explored.
Research Question
What do patients with COPD, their informal caregivers (“carers”), and health care providers experience over the course of COPD?
Research Methods
Literature Search
Search Strategy
Literature searches for studies published from January 1, 2000, to November 2010 were performed on November 29, 2010, using OVID MEDLINE; on November 26, 2010, using ISI Web of Science; and on November 28, 2010, using EBSCO Cumulative Index to Nursing and Allied Health Literature (CINAHL). Titles and abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. One additional report, highly relevant to the synthesis, appeared in early 2011 during the drafting of this analysis and was included post hoc.
Inclusion Criteria
English-language full reports
studies published between January 1, 2000, and November 2010
primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies) and secondary syntheses of primary qualitative empirical research
studies addressing any aspect of the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies addressing multiple conditions were included if COPD was addressed explicitly
Exclusion Criteria
studies addressing topics other than the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers
studies labelled “qualitative” but not using a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, or observational analysis using qualitative categorical variables)
quantitative research (i.e., using statistical hypothesis testing, using primarily quantitative data or analyses, or expressing results in quantitative or statistical terms)
studies that did not pose an empirical research objective or question, or involve the primary or secondary analysis of empirical data
Outcomes of Interest
qualitative descriptions and interpretations (narrative or theoretical) of personal and social experiences of COPD
Summary of Findings
Experiences at Diagnosis
Patients typically seek initial treatment for an acute episode rather than for chronic early symptoms of COPD.
Many patients initially misunderstand terms such as COPD, chronic obstructive pulmonary disease, or exacerbation.
Patients may not realize that COPD is incurable and fatal; some physicians themselves do not consider early COPD to be a fatal disease.
Smokers may not readily understand or agree with the idea that smoking caused or worsens their COPD. Those who believe there is a causal link may feel regret or shame.
Experiences of Living Day to Day
COPD patients experience alternating good days and bad days. A roller-coaster pattern of ups and downs becomes apparent, and COPD becomes a way of life.
Patients use many means (social, psychological, medical, organizational) to control what they can, and to cope with what they cannot. Economic hardship, comorbidities, language barriers, and low health literacy can make coping more difficult.
Increasing vulnerability and unpredictable setbacks make patients dependent on others for practical assistance, but functional limitations, institutional living or self-consciousness can isolate patients from the people they need.
For smokers, medical advice to quit can conflict with increased desire to smoke as a coping strategy.
Many of the factors that isolate COPD patients from social contact also isolate them from health care.
Experiences of Exacerbations
Patients may not always attribute repeated exacerbations to advancing disease, instead seeing them as temporary setbacks caused by activities, environmental factors, faltering self-management, or infection.
Lack of confidence in community-based services leads some patients to seek hospital admission, but patients also feel vulnerable when hospitalized. They may feel dependent on others for care or traumatized by hospital care routines.
Upon hospital discharge following an exacerbation, patients may face new levels of uncertainty about their illness, prognosis, care providers, and supports.
Experiences of the End of Life
Patients tend to be poorly informed about the long-term prognosis of COPD and what to expect toward the end of life; this lack of understanding impairs quality of life as the disease progresses.
As the end of life approaches, COPD patients face the usual challenges of daily living, but in a context of increasing exacerbations and deepening dependency. Activities and mobility decrease, and life may become confined.
Some clinicians have difficulty identifying the beginning of “the end of life,” given the unpredictable course of COPD. Long-term physician-patient relationships, familiarity and understanding, trust, good communication skills, sensitivity, and secure discussion settings can help facilitate end-of-life discussions.
Divergent meanings and goals of palliative care in COPD lead to confusion about whether such services are the responsibility of home care, primary care, specialty care, or even critical care. Palliative end-of-life care may not be anticipated prior to referral for such care. A palliative care referral can convey the demoralizing message that providers have “given up.”
Experiences of Carers
Carers’ challenges often echo patients’ challenges, and include anxiety, uncertainty about the future, helplessness, powerlessness, depression, difficulties maintaining employment, loss of mobility and freedoms, strained relationships, and growing social isolation.
Carers feel pressured by their many roles, struggling to maintain patience when they feel overwhelmed, and often feeling guilty about not doing enough.
Carers often face their own health problems and may have difficulty sustaining employment.
Synthesis: A Disease Trajectory Reflecting Patient Experiences
The flux of needs in COPD calls for service continuity and flexibility to allow both health care providers and patients to respond to the unpredictable yet increasing demands of the disease over time.
PMCID: PMC3384365  PMID: 23074423
25.  Improving the network management of integrated primary mental healthcare for older people in a rural Australian region: protocol for a mixed methods case study 
BMJ Open  2014;4(9):e006304.
An integrated approach to the mental healthcare of older people is advocated across health, aged care and social care sectors. It is not clear, however, how the management of integrated servicing should occur, although interorganisational relations theory suggests a reflective network approach using evaluation feedback. This research will test a network management approach to help regional primary healthcare organisations improve mental health service integration.
Methods and analysis
This mixed methods case study in rural South Australia will test facilitated reflection within a network of health and social care services to determine if this leads to improved integration. Engagement of services will occur through a governance group and a series of three 1-day service stakeholder workshops. Facilitated reflection and evaluation feedback will use information from a review of health sector and local operational policies, a network survey about current service links, gaps and enablers and interviews with older people and their carers about their help seeking journeys. Quantitative and qualitative analysis will describe the policy enablers and explore the current and ideal links between services. The facilitated reflection will be developed to maximise engagement of senior management in the governance group and the service staff at the operational level in the workshops. Benefit will be assessed through indicators of improved service coordination, collective ownership of service problems, strengthened partnerships, agreed local protocols and the use of feedback for accountability.
Ethics, benefits and dissemination
Ethics approval will deal with the sensitivities of organisational network research where data anonymity is not preserved. The benefit will be the tested utility of a facilitated reflective process for a network of health and social care services to manage linked primary mental healthcare for older people in a rural region. Dissemination will make use of the sectoral networks of the governance group.
PMCID: PMC4166139  PMID: 25227632

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