Self-reported coping strategies in families of patients in early stages of psychotic disorder: an exploratory study

Aim: Coping by families of patients with schizophrenia include ‘approach’ strategies considered to be adaptive (e.g. reinterpretation) and potentially maladaptive ‘avoidant’ strategies (denial/disengagement, use of alcohol and drugs). Little is known about coping strategies used by families of individuals with incipient or emergent psychosis. Methods: Self‐reported coping styles were assessed in family members of 11 ultra high risk and 12 recent‐onset psychosis patients, using a modified version of Carver's Coping Orientations to Problems Experienced questionnaire. Results: Families reported moderate use of ‘approach’ coping (e.g. planning, seeking social support, positive reinterpretation, acceptance and turning to religion) and rare use of ‘avoidant’ coping strategies (denial/disengagement and use of alcohol and drugs). Conclusions: The greater endorsement of ‘approach’ coping by these families is consistent with findings for families of first episode psychosis patients, and it is in contrast to more prevalent ‘avoidant’ coping by families of patients with more chronic psychotic illness. Early intervention could plausibly help families maintain the use of potentially more adaptive ‘approach’ coping strategies over time.     

Trajectory to a first episode of psychosis: a qualitative research study with families

Aim: The trajectory in psychotic disorders which leads from a relatively normal premorbid state in young people to a first episode of psychosis is only partly understood. Qualitative research methods can be used to begin to elucidate the temporal unfolding of symptoms leading to a first episode of psychosis, and its impact on families. Methods: We conducted open‐ended interviews with family members of 13 patients with recent onset non‐affective psychotic disorders, which focused on changes observed, effects on the family, explanatory models, help‐seeking patterns and future expectations. Standard data analytic methods employed for qualitative research were used. Results: Narratives by family members were remarkably similar. First, social withdrawal and mood symptoms developed in previously normal children; these changes were typically ascribed to drugs or stress, or to the ‘storminess’ of adolescence. Coping strategies by family members included prayer and reasoning/persuasion with the young person, and family initially sought help from friends and religious leaders. Entry into the mental health system was then catalysed by the emergence of overt symptoms, such as ‘hearing voices’, or violent or bizarre behaviour. Family members perceived inpatient hospitalization as traumatic or difficult, and had diminished expectations for the future. Conclusions: Understanding families' explanatory models for symptoms and behavioural changes, and their related patterns of help‐seeking, may be useful for understanding evolution of psychosis and for the design of early intervention programmes. Dissatisfaction with hospitalization supports the mandate to improve systems of care for recent‐onset psychosis patients, including destigmatization and a focus on recovery.     

Stigma and treatment delay in first-episode psychosis: a grounded theory study

Aim: 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. Methods: 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. Results: 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. Conclusions: 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.     

Perceived and experienced stigma in first-episode psychosis: A 1-year follow-up study

ObjectivesPerceived/experienced stigma and its relationship with clinical outcome were investigated across the first year of treatment in a large sample with first-episode psychosis (FEP).MethodsFEP participants (n = 112) in the TOP study were investigated at baseline and 1-year follow-up. Perceived/experienced stigma was measured with items from the World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0), assessing problems because of barriers and hindrances, and living with dignity because of attitudes and actions of others. Clinical outcome included: symptoms, global functioning, self-rated disability and self-rated life satisfaction.ResultsIn the total sample, 46% perceived/experienced stigma at baseline, which decreased significantly to 32% at 1-year follow-up. Perceived/experienced stigma was present in 1/5 at both time-points (Sustained stigma), in 2/5 at only one time-point (Transient stigma), and in 2/5 it was not present at either time-point (No stigma). Compared to the No stigma group, the Sustained stigma group had significantly higher levels of positive, excited and depressive symptoms and self-rated disability, as well as lower levels of global functioning and life satisfaction at 1 year follow-up, while the Transient stigma group only had poorer functioning and higher self-rated disability. Yet the outcome variables improved across the first year of treatment in all three stigma groups.ConclusionPerceived/experienced stigma was common in FEP, yet the rate decreased across the first year of treatment. Although there was some clinical improvement across the first year of treatment irrespective of stigma, stigma was related to poorer clinical outcome in a bidirectional manner. This suggests that perceived/experienced stigma is an important target in the early stages of treatment.     

Help-seeking pathways in early psychosis

Introduction Understanding the help-seeking pathways of patients with a putative risk of developing psychosis helps improving development of specialised care services. This study aimed at obtaining information about: type of health professionals contacted by patients at putative risk for psychosis on their help-seeking pathways; number of contacts; type of symptoms leading to contacts with health professionals; interval between initial contact and referral to a specialised outpatient service. Method The help-seeking pathways were assessed as part of a prospective study in 104 patients with suspected at-risk states for psychosis. Results The mean number of contacts prior to referral was 2.38. Patients with psychotic symptoms more often contacted mental health professionals, whereas patients with insidious and more unspecific features more frequently contacted general practitioners (GPs). Conclusions GPs have been found to under-identify the insidious features of emerging psychosis (Simon et al. (2005) Br J Psychiatry 187:274–281). The fact that they were most often contacted by patients with exactly these features calls for focussed and specialised help for primary care physicians. Thus, delays along the help-seeking pathways may be shortened. This may be of particular relevance for patients with the deficit syndrome of schizophrenia.     

Associative stigma in family members of psychotic patients in Flanders: An exploratory study

AIM: To assess presence and severity of associative stigma in family members of psychotic patients and factors for higher associative stigma.METHODS: Standardized semi-structured interview of 150 family members of psychotic patients receiving full time treatment. This study on associative stigma in family members of psychotic patients was part of a larger research program on the burden of the family, using “Interview for the Burden of the Family” and the chapters stigma, treatment and attribution from the “Family interview Schedule”. The respondents were relatives, one per patient, either partner or parent. The patients had been diagnosed with schizophrenia or schizo-affective disorder. All contacts with patients and relatives were in Dutch. Relatives were deemed suitable to participate in this research if they saw the patient at least once a week. Recruitment took place in a standardized way: after obtaining the patient’s consent, the relatives were approached to participate. The results were analyzed using SPSS Version 18.0.RESULTS: The prevalence of associative stigma in this sample is 86%. Feelings of depression in the majority of family members are prominent. Twenty-one point three percent experienced guilt more or less frequent, while shame was less pronounced. Also, 18.6% of all respondents indicated that they tried to hide the illness of their family member for others regularly or more. Three six point seven percent really kept secret about it in certain circumstances and 29.3% made efforts to explain what the situation or psychiatric condition of their family member really is like. Factors with marked significance towards higher associative stigma are a worsened relationship between the patient and the family member, conduct problems to family members, the patients’ residence in a residential care setting, and hereditary attributional factors like genetic hereditability and character. The level of associative stigma has significantly been predicted by the burden of aggressive disruptions to family housemates of the psychotic patient.CONCLUSION: Family members of psychotic patients in Flanders experience higher associative stigma compared to previous international research. Disruptive behavior by the patient towards in-housing family members is the most accurate predictor of higher associative stigma.     

The course of neurocognition and social functioning in individuals at ultra high risk for psychosis

OBJECTIVE: This study evaluates longitudinal neuropsychological performance and its association with clinical symptomatology and psychosocial outcome in individuals identified as ultra high risk (UHR) for psychosis. METHODS: Thirty-five UHR individuals completed neurocognitive, clinical, and social/role functioning assessments at baseline and, on average, 8.3 months later. RESULTS: UHR subjects showed significant cognitive deficits at baseline and 2 distinct profiles of cognitive change over time. On average, 50% demonstrated improvement in social and role functioning over the follow-up period, while the other half showed either stability or decline in functioning. Functional improvement was associated with improved processing speed and visual memory, as well as improvement in clinical symptoms over the follow-up period. In contrast, patients who did not improve functionally showed stable clinical symptoms and cognitive performance over time. CONCLUSIONS: Although the degree of neurocognitive deficit at baseline in UHR patients does not predict psychosocial outcome, the course of neurocognitive change over the first 8 months of follow-up does differentiate patients with good and poor functional outcomes.     

Olfactory processing in schizophrenia,non-ill first-degree family members,and young people at-risk for psychosis

Objectives. While deficits in odor identification and discrimination have been reported in schizophrenia, few studies have examined the relative specificity of these deficits in patients and at-risk youth. Method. Sniffin’ Sticks odor identification and discrimination were assessed in schizophrenia outpatients and non-ill first-degree relatives (Study One), as well as youth at clinical (CR) or genetic (GR) risk for schizophrenia (Study Two). Scores were z-transformed, using the performance of a demographically-matched adult or adolescent comparison group. Results. Patients and relatives were impaired on odor identification, but odor discrimination impairment was limited to the patient group. A similar pattern of impairment emerged in at-risk youth. GR youth were impaired on odor identification but not discrimination, while CR youth were impaired on both tasks. In patients, olfactory impairment was correlated with negative symptomatology. Conclusions. To our knowledge, this is the first study to show that CR youth are impaired on both olfactory tasks, as observed in adult schizophrenia patients. GR youth were impaired only on odor identification like their adult counterparts. These data suggest that odor identification impairment, in isolation, may represent a genetic marker of vulnerability for schizophrenia, while odor discrimination deficits may be a biomarker associated with the development of psychosis.     

A randomized trial of family focused treatment for adolescents and young adults at risk for psychosis: study rationale, design and methods

Aim: This article outlines the rationale for a family‐focused psychoeducational intervention for individuals at risk for psychosis and explains the design of a randomized multisite trial to test its efficacy. Methods: Adolescents and young adults that meet criteria for a psychosis risk syndrome at eight participating North American Prodromal Longitudinal Study sites are randomly assigned to a 6‐month, 18‐session family‐focused treatment for prodromal youth or a 3‐session psychoeducational enhanced care control intervention and followed over 1 year. Results: The results will determine whether the use of a family intervention is able to significantly improve functional outcomes, decrease the severity of positive symptoms and possibly prevent the onset of full psychosis, compared with enhanced care alone. Levels of familial criticism at baseline are hypothesized to moderate responses to family intervention. Improvements in knowledge about symptoms, family communication and problem solving will be tested as mediators in the pathways between treatment assignment and clinical or psychosocial outcomes in high‐risk youth. Conclusions: The ongoing trial evaluates whether a non‐invasive psychosocial approach can significantly enhance functional outcomes and prevent the ultra high risk patients from developing psychosis. The results will provide an important stepping stone in the movement of the field from refining early detection strategies to developing efficacious preventative treatments.