Living with schizophrenia from the perspective of outpatients and their parents

Sammanfattning: The aim of this thesis was to investigate how outpatients with schizophrenia experienced their situation in terms of need and quality of life. A further aim was to investigate how their parents experienced the need of their daughter or son and how it influenced their own life. In order to investigate need and quality of life of outpatients with schizophrenia according to DSM-III-R, (n=19) at baseline and five-year follow-up (n=17) the outpatients completed the following questionnaires: Camberwell Assessment of Need (CAN-R), the Quality of Life Scale (QLS-100), the Global Assessment of function (1) and the Clinical Global Impression (CGI) at follow-up the Insight Scale (2). In study II, outpatients with schizophrenia according to DSM-IV (n=32) and their parents (n=44) and staff (n=31) were included. To investigate the outpatients' need both the patients, their parents and staff completed the CAN-R questionnaire. In study III, the quality of life of the parents (n=38) was investigated with the help of the questionnaire Quality of Life Index (QLI), which was completed by the parents and a reference group (n=689). In addition, the questionnaire Burden Assessment Scale (BAS) was used in order to describe the parents' burden. In order to better understand how living with outpatients with schizophrenia (n=8) influenced parents, the parents were interviewed and data were analysed according to the Empirical Phenomenological Psychological (EPP) method. The total number of needs in study I, according to CAN, was 7.1 ± 3.2 at the baseline and 6.3 ± 2.8 at the follow-up. Using our cut-off point, 5 patients at the baseline and 1 at the follow-up had greater problems. The outpatients were more satisfied with their quality of life after five years than baseline (p< 0.05). The need ranking of key workers and patients showed a correlation rho=0.68 (p<0.05) at the baseline and rho=0.74 (p<0.05) at the follow-up. The difference in number of needs was that the key workers identified more topics where the patients had needs than the patients did themselves. The outpatients in study II, rated the total score of the severity of needs at a mean of 7 ± 4, while the mean score for both parents and the staff was 9 ± 5. The unmet needs in mean values for the patients were 2 ± 2 and 4 ± 5 for both parents and the staff. The needs ranking between patients and parents and patients and staff both showed a correlation of rho=0.65 (p<0.01). The correlation between parents and staff was rho=0.95 (p<0.01). Parents and staff rated needs in different areas. There was a correlation between the total number of needs and how the patients functioned rho=0.53 (p <0.01) and the severity of illness rho=0.64 (p<0.01), respectively, assessed by GAF and CGI. The parents were significantly less satisfied with their overall quality of life with a mean value of 19.5 ± 4.0 compared with the reference group, which had a mean value of 21.2 ± 4.1 (p<0.05); however, when divided into age groups, there was no significant difference in quality of life in the oldest age group 71-80. There were significant correlations between lower overall quality of life and higher burden r=0.58 (p<0.01) as well as between lower psychological/spiritual values and higher burden r=0.42 (p<0.05). The experience of living with a mentally ill daughter or son includes both emotions and changed reality that parents must adapt to. Four points relating to the general structure of themes were identified; emotions in parenthood, changes in the families, interaction with others and adaptation to the illness. All the themes included also five subthemes: confusion following the first appearance of the illness, interpreting the illness and loss in terms of grief, the importance of support, adaptation to the loss and feelings about the future in terms of worry and hope. In order to support the outpatients and their parents, it is important to assess need, listen more on their experiences and increase our knowledge about their situation.