The period of untreated psychosis before treatment initiation: A qualitative study of family members’ perspectives. Comprehensive Psychiatry, 49(6), 530-536

Department of Behavioral Sciences and Health Education, Rollins School of Public Health of Emory University, Atlanta, GA 30322, USA.
Comprehensive psychiatry (Impact Factor: 2.26). 11/2008; 49(6):530-6. DOI: 10.1016/j.comppsych.2008.02.010
Source: PubMed

ABSTRACT This study used a qualitative research methodology to explore common themes pertaining to the period of untreated psychosis before treatment initiation in hospitalized, urban, African American, first-episode psychosis patients.
Twelve family members of 10 patients were interviewed at length to gather detailed narrative accounts of factors related to untreated psychosis and treatment delay. Using qualitative analysis, verbatim transcripts were reviewed by 2 researchers to identify prominent themes useful for generating future research hypotheses.
Four themes emerged as informative of the period of untreated psychosis before treatment initiation: (1) misattribution of symptoms or problem behaviors (eg, depression, drug use, and adolescent rebellion), (2) positive symptoms causing unusual or dangerous behaviors that served as a catalyst for initiating treatment, (3) views about personal autonomy of an adult or nearly adult patient, and (4) system-level factors (eg, unaffordability of health care and inefficiency on the part of health care providers).
Family members encountered numerous barriers when seeking treatment, including their own misattributions, the nature of the patient's symptoms, financial issues, and system-level delays. The themes uncovered in this formative analysis merit further exploration with additional qualitative and quantitative research.

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Available from: Nancy J Thompson, Mar 24, 2014
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    • "Absence of a family history of psychosis or prior exposure to psychiatric illnesses (Chen et al., 2005; Norman et al., 2006; Schimmelmann et al., 2007; Verdoux et al., 1998), lower levels of knowledge and awareness of mental illnesses (deHaan et al., 2002; Phillips et al., 1999; Tirupati et al., 2004), inclination to deny the existence of a mental illness (Johannessen et al., 2001; McGlashan, 1999), lower aptitude in tolerance and coping (Chong et al., 2005; Larsen et al., 1996; Yamazawa et al., 2004), and poorer family strengths (Goulding et al., 2008) may be potential determinants of DUP. Parental uncertainty over potentially symptomatic behaviors, self-reported caregiver burden, and the parents' view of their children as autonomous adults have been suggested as potential predictors of prolonged DUP (Czuchta and McCay, 2001; Bergner et al., 2008). Many of these studies report preliminary results, and most have not directly assessed family members who were actively involved in initiating care for first-episode patients. "
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    ABSTRACT: 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 hazard 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.
    Schizophrenia Research 10/2009; 115(2-3):338-45. DOI:10.1016/j.schres.2009.09.029 · 4.43 Impact Factor
  • Psychiatric Annals 08/2008; 38(8):504-511. DOI:10.3928/00485713-20080801-03 · 0.71 Impact Factor
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    ABSTRACT: BackgroundPeople experience delays in receiving effective treatment for many illnesses including psychosis. These delays have adverse consequences in heart disease and cancer, and their causes have been the subject of much research but only in recent years have pathways to care in psychosis received such attention. We sought to establish if, when and where people seek help in the early phase of psychosis in a representative sample. MethodsOne hundred and sixty-five people with first episode psychosis, referred from community-based psychiatric services and a private psychiatric facility to an early intervention service over 18months, were interviewed with the Structured Clinical Interview for DSM-IV diagnoses. Symptoms were measured using the Schedule for the Assessment of Positive Symptoms, Schedule for the Assessment of Negative Symptoms and the Calgary Scale. Duration of untreated illness (DUI) and duration of untreated psychosis (DUP) were established using the Beiser Scale. Pathways to mental health services were systematically detailed through interviews with patients and their families. ResultsThe final sample consisted of 142 (88M, 54F) cases after those with psychosis due to a general medical condition and those without pathway and DUP data were excluded. Less than half of participants initiated help seeking themselves. Of those who did seek help (n=57) 25% did so during the DUI. Those who had a positive family history of mental illness and poorer premorbid adjustment were significantly less likely to seek help for themselves and those who did not seek help were more likely to require hospitalisation. Families were involved in help seeking for 50% of cases and in 1/3 of cases did so without the affected individual participating in the contact. Being younger and having more negative symptoms were associated with having one’s family involved in help seeking. Delays to effective treatment from the onset of psychosis were evenly split between “help-seeking delays” and “health-system delays”. Having a family member involved in help seeking and better premorbid adjustment were independently associated with shorter help-seeking delays when measured from the onset of psychosis. Being female, having better premorbid adjustment and fewer negative symptoms were associated with shorter help-seeking delays from the onset of illness. Those with a non-affective psychosis had significantly longer system delays. ConclusionMany people with first episode psychosis do not initiate help-seeking for themselves particularly those with a relative affected by mental illness. Those with poor premorbid adjustment are at particular risk of longer delays. Poor premorbid adjustment compounded by long delays to effective treatment reduces the likelihood of a good outcome. Families play a vital role in hastening receipt of effective treatment. KeywordsHelp seeking-Psychosis-Schizophrenia-Pathways-Primary care-Duration of untreated illness-Duration of untreated psychosis
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