Service users' experiences of participation in decision making in mental health services.

ACCESSIBLE SUMMARY: Despite the potential positive impact of shared decision making on service users knowledge and experience of decisional conflict, there is a lack of qualitative research on how participation in decision making is promoted from the perspective of psychiatric service users. This study highlights the desire of users to participate more actively in decision making and demonstrates that persons with SMI struggle to be seen as competent and equal partners in decision-making situations. Those interviewed did not feel that their strengths, abilities and needs were being recognized, which resulted in a feeling of being omitted from involvement in decision-making situations. The service users describe some essential conditions that could work to promote participation in decision making. These included having personal support, having access to knowledge, being involved in a dialogue and clarity about responsibilities. Mental health nurses can play an essential role for developing and implementing shared decision making as a tool to promote recovery-oriented mental health services. ABSTRACT: Service user participation in decision making is considered an essential component of recovery-oriented mental health services. Despite the potential of shared decision making to impact service users knowledge and positively influence their experience of decisional conflict, there is a lack of qualitative research on how participation in decision making is promoted from the perspective of psychiatric service users. In order to develop concrete methods that facilitate shared decision making, there is a need for increased knowledge regarding the users' own perspective. The aim of this study was to explore users' experiences of participation in decisions in mental health services in Sweden, and the kinds of support that may promote participation. Constructivist Grounded Theory (CGT) was utilized to analyse group and individual interviews with 20 users with experience of serious mental illness. The core category that emerged in the analysis described a 'struggle to be perceived as a competent and equal person' while three related categories including being the underdog, being controlled and being omitted described the difficulties of participating in decisions. The data analysis resulted in a model that describes internal and external conditions that influence the promotion of participation in decision making. The findings offer new insights from a user perspective and these can be utilized to develop and investigate concrete methods in order to promote user's participation in decisions.

Living situation, subjective quality of life and social network among individuals with schizophrenia living in community settings.

OBJECTIVE: To investigate the relationships between characteristics of the living situation in the community and subjective quality of life and social network among community-based individuals with schizophrenia. METHOD: A total of 418 individuals with schizophrenia from 10 sites were interviewed with regard to quality of life, psychopathology, social network and needs for care. Characteristics of the living situation investigated were: living alone or not, living with family or not, and having an independent or a sheltered housing situation. RESULTS: An independent housing situation was related to a better quality of life concerning living situation and living with the family to a better quality of life concerning family relations. An independent housing situation was associated with a better social network regarding availability and adequacy of emotional relations. CONCLUSION: People with schizophrenia with an independent housing situation have a better quality of life associated with more favorable perceptions of independence, influence, and privacy. Their social network is better irrespective of whether they live alone or not, or with family or not.

The Nordic Study on schizophrenic patients living in the community. Subjective needs and perceived help.

In a community sample of 418 persons diagnosed with schizophrenia, subjective needs and perceived help was measured by the Camberwell Assessment of Need (CAN). The mean number of reported needs was 6.2 and the mean number of unmet needs 2.6. The prevalence of needs varied substantially between the need areas from 3.6% ('telephone') to 84.0% ('psychotic symptoms'). The rate of satisfaction estimated as the percentage of persons satisfied with the help provided within an area varied between 20.0% ('telephone') and 80.6% ('food'). The need areas concerning social and interpersonal functioning demonstrated the highest proportion of unmet to total needs. In a majority of need areas the patients received more help from services than from relatives, but in the areas of social relations the informal network provided substantial help. In general the patients reported a need for help from services clearly exceeding the actual amount of help received. In a linear regression model symptom load (BPRS) and impaired functioning (GAF) were significant predictors of the need status, explaining 30% of the variance in total needs and 20% of the variance in unmet needs. It is concluded that the mental health system fails to detect and alleviate needs in several areas of major importance to schizophrenic patients. Enhanced collaboration between the care system and the informal network to systematically map the need profile of the patients seems necessary to minimise the gap between perceived needs and received help.

Predictors of social relations in persons with schizophrenia living in the community: a Nordic multicentre study.

BACKGROUND: Deinstitutionalisation has led to persons with serious mental illness spending most of their time outside psychiatric institutions. Not much is known about their social life. The paper presents the results of structured interviews with non-institutionalised persons with schizophrenia about treatment, care and social network. The network data are analysed from three perspectives: finding predictors of the number and of the quality of social contacts, and establishing the respective variables that characterise persons with high, and those with low, scores on both the quantity and quality dimensions of social integration. METHODS: Random samples of persons with schizophrenia receiving outpatient services in ten psychiatric centres in the four Nordic countries were interviewed. The following instruments were used: Interview Schedule for Social Interaction (ISSI), Camberwell Assessment of Needs, Lancashire Quality of Life Profile, General Assessment of Functioning (GAF) and Brief Psychiatric Rating Scale (BPRS), in addition to a checklist covering the utilisation of different services. The ISSI provided the main data for this paper. A restricted number of possible predictors were used in General Linear Model (GLM) factorial analysis and discriminant analysis. RESULTS: A total of 418 persons took part in the study. The overall participation rate was 55%. Social integration in terms of number of contacts was related to a high GAF score, few BPRS negative and hostility symptoms, having contact with user organisations and living in urban (in contrast to rural) areas. Availability of emotional relations was predicted by female sex, low scores on the BPRS hostility dimension, high GAF score, having contact with one's family more than once a month, and living in urban areas. Work, adequate leisure activities and GAF score discriminated between the best and worst integrated groups. CONCLUSIONS: Living in urban areas, being female, having a high GAF score and low scores on hostility predicted better integration in terms of number of contacts and emotional relations.

Comparison of key worker and patient assessment of needs in schizophrenic patients living in the community: a Nordic multicentre study.

OBJECTIVE: The present study is part of a Nordic multicentre study investigating the life and care situation of community samples of schizophrenic patients. The specific aim of the present part of the study was to examine the agreement between patients and their key worker concerning the presence of met and unmet needs in a number of life domains, and help or support given in these domains. METHOD: The comparisons were based on 300 matched pairs of assessments of need using the Camberwell Assessment of Need interview. RESULTS: The results showed that key workers identified slightly more needs, 6.17 vs. 5.76, a significant difference. There was a moderate or better agreement on the presence of a need in 17 of 22 life domains investigated, but in only 11 life domains concerning the presence of an unmet need. Disagreement concerning whether the patient was given the right kind of help or support was even more substantial. CONCLUSION: It is concluded that key workers and patients disagree particularly concerning unmet needs and that this is potentially related to a number of factors associated with the key worker and patient. It is also concluded that further research is needed to increase the knowledge concerning the sources of this disagreement if need assessment is to become a valid basis for service planning and individual treatment planning.

Informed consent in two Swedish prisons: a study of quality of information and reasons for participating in a clinical trial.

OBJECTIVES: To study the quality of informed consent in two samples of prisoners participating in a therapeutic trial. RESULTS: All participants (n=43) were aware of the fact that they had participated in a research project, that they were free to abstain from participation, and that they were free to withdraw from participation at any time. All but six were aware of the objective of the clinical trial and all but three understood the implications of participating. Twenty individuals did not consider the pros and cons. When making their respective decisions, no one felt that they had been subjected to undue persuasion or force. Concerning the reasons for participating, a majority (n=35) supposed that participation would benefit themselves' as the primary reason. Some (n=11) considered the benefits for future patients and science. No differences concerning gender or age were discerned. CONCLUSIONS: The results do not indicate that the informed consent procedure in general was inadequately performed. Rather, the answers provided and the subjects who withdrew indicate that participation was perceived as fully voluntary.

Predictors for readmission risk of new patients: the Nordic Comparative Study on Sectorized Psychiatry.

OBJECTIVE: Predictors for readmission risk were investigated in this study, which forms part of the Nordic Comparative Study on Sectorized Psychiatry. METHOD: Included were a total of 837 consecutive 'new' patients (not in contact with the psychiatric services for at least 18 months) admitted to in-patient stay during a period of 1 year to seven psychiatric hospitals in four Nordic countries. RESULTS: Multivariate survival analyses showed that younger age predicted increased readmission risk. Stratifying on gender, diagnostic group and sector revealed a general pattern concerning age which was the only consistent main effect. Living alone and unemployed increased readmission risk in the non-psychosis group, while receipt of aftercare decreased readmission risk in the psychosis group. A curvilinear relationship was found between availability of psychiatric resources and readmission risk: an intermediate amount of resources was associated with increased risk. CONCLUSION: Our findings support a hypothesis that readmission risk is multifactorially determined and that interactions have to be considered.

The Nordic Comparative Study on Sectorized Psychiatry--length of in-patient stay.

OBJECTIVE: Length of stay (LOS) of 'first' in-patient episodes was investigated in this study, which is part of the Nordic Comparative Study on Sectorized Psychiatry. METHOD: A total of 837 consecutive 'new' patients (not in contact with the psychiatric services for at least 18 months) admitted as in-patients during a period of 1 year to seven psychiatric hospitals in four Nordic countries were included. RESULTS: Survival analyses showed considerable differences in LOS between the hospitals, and the factors analysed in this study could not explain this variance. Older age, being female, having no children at home, psychosis, planned admission and out-patient contacts were all associated with increased LOS. CONCLUSION: Stratifying on gender, diagnostic group and hospital revealed a general pattern of associations except for age.

Research ethics committees: a comparative study of assessment of ethical dilemmas.

Research ethics committees (REC) constitute an important instrument for the regulation of biomedical research involving human beings. The purposes of this work were to study the ethical reasoning in RECs and to ascertain whether the composition of RECs has any bearing on the decisions subsequently made by them. We used a postal questionnaire, containing authentic cases of research ethical dilemmas, sent to the ten RECs in Sweden (n = 124) and to comparison groups consisting of 200 randomly selected medical researchers, 200 randomly selected healthcare politicians and 200 randomly selected district nurses. The average response rate was 68%. A difference was found in how REC members assess a project in comparison with researchers, healthcare politicians and district nurses. Differences depended on the type of project assessed. The study indicates that membership in RECs may exert a normative influence on its members. It is proposed that this investigation should be followed up by a study with a qualitative design.

The Nordic comparative study on sectorized psychiatry: rates of compulsory care and use of compulsory admissions during a 1-year follow-up.

BACKGROUND: As part of a Nordic comparative study on contact rates of new patients and use of services in seven catchment areas, rates of compulsory care and use of compulsory admissions were explored and analyzed. The total cohort comprised 2834 patients. RESULTS: A total of 219 patients, 7.7%, were subject to compulsory care during the follow-up. The proportion of compulsorily admitted patients of all admitted patients ranged from 6% to 58% in the seven psychiatric services, and the rate of compulsory care per 1,000 inhabitants, from 0.14 to 0.99. The diagnostic subgroup most commonly committed to inpatient care was functional psychosis, comprising around 50% of all compulsory admissions. The strongest predictor of being compulsorily admitted was the specific psychiatric service the patient was in contact with, followed by having a psychosis diagnosis. High consumption of care was also associated with compulsory care, while social variables played only a minor role in predicting compulsory care. CONCLUSIONS: There was a great variation in rates of compulsory care. No consistent rural-urban pattern in rates of commitment was found. It is discussed whether a formal referral procedure to the psychiatric service is associated with higher rates of compulsory care.

Predictors of subjective quality of life in schizophrenic patients living in the community. A Nordic multicentre study.

As part of a Nordic multi-centre study investigating the life and care situation of community samples of schizophrenic patients the aim of the present part of the study was to examine the relationship between global subjective quality of life and objective life conditions, clinical characteristics including psychopathology and number of needs for care, subjective factors such as satisfaction with different life domains, social network, and self-esteem. A sample of 418 persons with schizophrenia from 10 sites was used. The results of a final multiple regression analysis, explaining 52.3% of the variance, showed that five subjective factors were significantly associated with global subjective quality of life, together with one objective indicator, to have a close friend. No clinical characteristics were associated with global subjective quality of life. The largest part of the variance was explained by satisfaction with health, 36.3% of the variance, and self-esteem, 7.3% of the variance. It is concluded that the actual relationship between objective life conditions and subjectively experienced quality of life still remains unclear. Furthermore, it seems obvious that personality related factors such as self-esteem, mastery and sense of autonomy also play a role in the appraisal of subjective quality of life, which implies that factors like these are important to consider in clinical and social interventions for patients with schizophrenia in order to improve quality of life for these persons.

The Nordic Comparative Study on Sectorized Psychiatry: continuity of care related to characteristics of the psychiatric services and the patients.

The problem addressed in this paper is how continuity of care is related to characteristics of psychiatric services, previous events in a patient's pattern of care and patient characteristics. The present paper is a part of a Nordic Comparative Study on Sectorized Psychiatry in seven catchment areas in four Nordic countries. One-year-treated-incidence cohorts were used. Each patient was followed for 1 year after the first contact with the psychiatric service. Continuity of care was measured by the time from discharge from hospital to the first subsequent day-patient or outpatient contact. Notable findings were large differences in the continuity of care in the seven services, high proportions of discharges without any aftercare contacts and long time lags between discharges and aftercare contacts in most of the catchment areas. A Cox regression analysis revealed that aftercare following hospitalisation seems to be more probable if the outpatient services are located geographically close to the patients, if the hospitalisation lasted between 2 and 4 weeks, if there was a community care contact shortly before the hospital admission and if the patient is not retired and not divorced. Staff resources were not related to continuity of care.

The Nordic Comparative Study on Sectorized Psychiatry: patients who use only psychiatric in-patient care in comprehensive community-based services--a 1-year follow-up study.

In the present paper a sample of patients using psychiatric in-patient care only is characterized and analysed with regard to characteristics of the psychiatric services. This paper forms part of the Nordic Comparative Study on Sectorized Psychiatry, designed to investigate contact rates and use of psychiatric care by new patients in 7 catchment areas in 4 Nordic countries during a 1-year follow-up. One-year treated incidence cohorts were used. The logistic regression analysis revealed that the variable 'psychiatric service' was one of the statistically significant determinants of using only in-patient care during the follow-up. The diagnostic groups with the highest probability of using only in-patient care were dependencies and functional psychoses. The following factors were associated with a high risk of using only in-patient care: older age, being referred by another psychiatrist, having received previous psychiatric in-patient care, male sex, being retired, and not living with one's parents or a partner. Patients who used only in-patient care had fewer admissions and days in in-patient care than others during the 1-year follow-up period. Lack of 24-hour emergency services in out-patient care correlated positively with the use of only in-patient care.

The Nordic Comparative Study on Sectorized Psychiatry: contact rates and use of services for patients with a functional psychosis.

As part of a Nordic comparative study on contact rates of new patients and use of services in seven catchment areas, contact rates and use of services for patients with a functional psychosis during a 1-year follow-up period were investigated. The highest contact rates were found in two large city catchment areas in Stockholm and Copenhagen. Compared to other patients in the cohorts, patients with a functional psychosis were more often found to be unemployed and living alone. They also showed more extensive service use in terms of both voluntary and compulsory admissions, and in the use of day-care facilities. In addition, they were more often multiple users of in-patient care (> or =3 admissions during the follow-up period). Large differences in service use among patients with a functional psychosis were discovered between the catchment areas, with the most extensive use of voluntary in-patient care and day-care facilities in Frederiksberg. Patients most frequently had compulsory admissions in Bodö and least frequently had them in Frederiksberg. Out-patient services were most frequently used in Stockholm. Correlations between levels of resources and use of services for patients with a functional psychosis were in general low, except for the rates of short-term beds, which showed a strong and significant correlation with the number of days in voluntary in-patient care (r=0.89).

Factors associated with referral to psychiatric care by general practitioners compared with self-referrals.

BACKGROUND: The gatekeeper function of the general practitioner (GP) in the pathway to specialized psychiatric services was investigated in this study, which is part of the Nordic Comparative Study on Sectorized Psychiatry. The question addressed in this paper is whether different sociodemographic and clinical factors as well as factors related to service utilization are associated with referral from the GP compared with self-referrals (including referrals from relatives). METHODS: The study comprised a total of 1413 consecutive patients, admitted during 1 year to five psychiatric centres in four Nordic countries. The centres included in this study were those that accepted non-medical referrals. Only new patients (not in contact with the service for at least 18 months) were included. RESULTS: Increasing age was the only sociodemographic factor significantly associated with referral by the GP. The clinical factors (psychosis, being totally new to psychiatry and being in need of in-patient treatment) and some treatment characteristics (planned out-patient treatment and involuntary in-patient treatment), were all significantly associated with referral by the GP. Some indication was found that self-referred patients have shorter episodes of care. CONCLUSIONS: The findings were remarkably stable across the different centres indicating a general pattern. This study extends previous work on the role of GPs in the pathway to specialized psychiatric services and indicates that the GP has an important gatekeeper function for the most disabled patients.

When others decide: reasons for allowing patients with Alzheimer's disease to participate in nontherapeutic research.

The quality of information given to family members of patients with Alzheimer's disease was studied. The patients had participated in a pharmacological investigation. The relatives were generally satisfied with the information given, and perceived it as adequate. The reasons given for allowing the patients to participate in the investigation were mainly altruistic.

Informed consent in clinical training--patient experiences and motives for participating.

The purpose of this study was to assess patients' attitudes to and experiences of participating in the clinical training of medical students. Samples of patients (n = 582) selected at random from six different departments (gynaecology, psychiatry, internal medicine, paediatrics, urology and a health care centre with general practitioners) were interviewed by means of a questionnaire. The patients were selected from those who had consulted the actual departments in the last six months of 1995. Four hundred and forty-one patients (76%) answered the questionnaire. Seventy-one per cent of all patients had experience of participating; of these 41% had estimated that they had once or several times participated without being informed. Eighty per cent felt aggrieved if they were not informed. On average 88% were, in principle, positive to participating. Of those who were, in principle, negative a majority had negative experiences of participating. Elderly patients tended to accept participating more often without being informed. Almost all patients seemed to be positive to participating in the education of medical students, although a silent precondition might be that patients should be informed and given the opportunity to abstain.

The Nordic comparative study on sectorised psychiatry: repeated emergency admissions to inpatient care during a 1-year follow-up.

The emergency admissions to hospital care in six psychiatric services in four Nordic countries were explored as a part of a Nordic comparative study on sectorised psychiatry. One year treated incidence cohorts were used, with the total cohort comprising 2,454 patients. Of the 803 patients who were admitted to inpatient care during a 1-year follow-up, 82% had at least one emergency admission and 23% repeated emergency admissions. The definition for the repeated emergency admissions was at least two admissions during the follow-up. The mean length of stay in emergency inpatient care per treatment episode for this patient subgroup was 28 days. Their emergency inpatient episodes constituted 30% of all inpatient days during the follow-up. However, the variations between the services and diagnostic subgroups were large. The results of a logistic regression analysis indicated that the following variables predicted repeated emergency admissions: inpatient care at index contact, emergency outpatient contacts or no planned hospital admissions during the follow-up, psychiatric service, age under 45 years, and a diagnosis of psychosis, personality disorder or dependency. The repeated emergency admissions were related to the existence of a special service unit for abusers but not to the rates of outpatient staff or acute beds in the services, to geographical distances, referral practice or existence of emergency services.