Depot-neuroleptics for better or for worse : patients' and nurses' experiences of long-term treatment in psychiatric outpatient care

Sammanfattning: The overall aim of this thesis was to explore and describe how patients and nurses experience long-term treatment with depot neuroleptics given by injections and their interactions with each other. Moreover the intention was to gain an insight into how common depot treatment is by delineating occurrence of schizophrenia and other psychotic disorders. The design of the study is explorative, using both quantitative and qualitative methods. Study I is based on investigations of records and databases for 71 patients. Data were processed by using descriptive statistics and analysed by using non-parametric statistics. Study II consists of interviews with nine psychiatric nurses and study IV of interviews with eleven patients. A qualitative content analysis was used in processing the data. Studies II and IV consist of primary analysis of data and studies III and V are secondary analyses of the same data as in II and IV. Results from study I show that the incidence rate was 34.8 per 100,000 inhabitants (18-45 years). 60% of the patients were diagnosed as schizophrenia syndromes. At 5-year follow-up, 73% of the patients in the schizophrenia syndromes group vs. 47% of the non-schizophrenia group had a sick pension or were on long-term sick leave. 52% of the patients were prescribed neuroleptics at the five-year follow. One third of the patients prescribed neuroleptics did not take the medication as prescribed. Slightly more than one quarter of the patients treated with neuroleptics were prescribed the medication as depot preparation. The main theme in study II is "The morality of treating patients with depot-neuroleptics". The sub-themes are 1) "Benevolent justification occurs when nurses perceive that the patients welfare is at stake"; 2) "Inability to advocate patients best interest occurs when nurses feel they are at a disadvantage"; 3) "Accommodative interactions occur when the nurses are able to respond to the patients expressed needs" and 4) "Acceptable advocacy occurs when physicians are sensitive to nurses suggestions on patients treatment". In study III the main theme is "Benevolent attitudes towards patient autonomy motivate the nurses interventions in relation to how they experience their own professional authority". The sub-themes are: 1) "Beneficent interventions used with patients perceived as cooperative when the nurses experienced a high degree of professional authority"; 2) "Paternalistic interventions used with patients perceived as ambiguous towards medication when the nurses experienced an arbitrary professional authority in cooperation with team members"; 3) "Weak paternalistic interventions used with patients perceived as unwilling when the nurses experienced having sufficient professional authority in the treatment situation" and 4) "Non-maleficence, or do nor harm, interventions used with patients perceived as being resigned when the nurses experienced a low degree of professional authority within the team". The main theme in study IV is "What cannot be cured must be endured: coming to terms with depot treatment". The sub-themes are: 1) "It was worse before: loss of control"; 2) "Learning to live with medication" and 3) "Recovering control over everyday life". In study V the main theme is "From submission to contentedness". The sub-themes are 1) "Supervised compliance: being the object of others decisions "; 2) "Uninformed compliance: from non-involvement to becoming own agents" and 3) "Informed compliance: consumers being contented with services". The results are grounded in data from a metropolitan area and show that long-term treatment with depot neuroleptics is common and usually administered at depot clinics. The findings of this study indicate that nurses are prepared to take more responsibility for these patients so that they can explore and follow up how the patients experience living with the medication. The findings also indicate that patients perceive they are expected to comply without questioning the treatment they receive. Both patients and nurses in this research, express that their involvement in decisions concerning medication is limited. For the nurses it means that strategies must be developed in order to be able to advocate for the patients in their care planning. For the patients it means that medication needs to be adjusted to their needs, taking into account side effects that affect their quality of life. In conclusion, the thesis has generated new questions that can be used in, for example, intervention studies. Such research could contribute to knowledge that could be applied in education, clinical work and organisational development.