Self-management Patterns And Needs Among Chinese People With Schizophrenia

Background:In China, most mental health services are confined to hospitals and community health services are limited. More than 90% of people with schizophrenia live with their families. They require self-management to facilitate well-being. Self-management status among people with schizophrenia were various and the effects of general self-management interventions were often not optimal. There have been studies exploring the different self-management patterns of people with other chronic disease, in order to provide more effective interventions. While the different self-management patterns and needs among people with schizophrenia have not been identified yet.Objectives:(1) To explore the patterns of self-management among Chinese people with schizophrenia. (2) To explore the needs about self-management among different patterns of clients and their caregivers.Methods:Totally 212 clients with schizophrenia and 193 caregivers living in 8 communities of Beijing were recruited. The self-management status was measured with the Chinese version of Schizophrenia Self-Management Instrument Scale (SSMIS) developed by Haiou Zou. (1) 157 client-caregiver matched data were used to analyze the agreement between clients and caregivers assessments for self-management status. Weighted kappa was calculated for 33 SSMIS items and intraclass correlation coefficients (ICC) for 6 domains. (2) K-means cluster analysis and discriminant analysis were performed to categorize clients based on their scores of 6 domains. Then the differences in self-management and characteristics between clusters were compared. (3) Totally 54 clients and caregivers from each pattern were interviewed to explore their needs in self-management. All these data were analyzed in content analysis.Results:(1) The weighted kappa values for the SSMIS items ranged from 0.420 to 0.876 (moderate/high agreement) except that for item 10 was lower (0.352), and all those P values were lower than 0.001. ICC values for the SSMIS domains were from 0.617 to 0.915 (P<0.001). These showed a significant moderate to high agreement between clients’ and their caregivers’ SSMIS assessment. (2) Then all the 228 SSMIS data were used for cluster analysis and discriminant analysis. Four distinct self-management patterns were identified:"No involvement" (3.9%), "Self-confident and Autonomous" (28.9%), "Passive and Compliant" (33.8%), "Overconfident" (33.3%). These four pattern clients had significant differences in age (P<0.001), sex (P=0.004), educational level (P=0.009), work status (P<0.001) and medication (P<0.001). (3) The needs about self-management among each pattern could be summarized into 3 categories:the need for knowledge and skills, social functions recovery and social support. The specific contents and levels of these needs and the ways to meet these needs were different among 4 patterns of interviewees. Clients of "No involvement" pattern needed more social supports while less social functions recovery, and their needs were often negative. Conversely, clients of "Self-confident and Autonomous" pattern needed more independence and wanted to improve themselves and return to society. Clients of "Passive and Compliant" pattern had more needs for collective work and social support for elderly clients. Clients of "Overconfident" pattern needed more knowledge about this disease and less social discrimination.Conclusions:(1) For people with schizophrenia who are clinically stable and without severe cognitive impairment and their caregivers who are family member taking major responsibilities for caring, there is a good agreement between the client-caregiver self-management assessments. (2) There are subgroups of people with schizophrenia, with unique multidimensional patterns of self-management behaviors. (3) Both people with schizophrenia and their caregivers have the needs for knowledge and skills, social functions recovery and social support. Not only medical staff but also government and the whole society should pay more attention to these. Hopefully, providing support according to each pattern’s characteristics and needs will be more customized and effective.