The present survey reveals the perceptions of persons with schizophrenia who have spent long periods of time under rehabilitation. From the collected information, three main information subthemes, namely reasons why the patients were willing to join rehabilitation, benefits of engaging in the activities, and the obstacles they face during transition from the rehabilitation centers to the real society, emerged. Specifically, the respondents indicated that rehabilitation activities had markedly improved their medication compliance, life skills and coping ability. Interestingly, the patients believed that friendship, a sense of personal belonging and value gained under rehabilitation were more important than the aforementioned gains. Various rehabilitation activities had enriched the patient's daily life. However, they hindered them from further integration into society to some extent. These results, which are based on patients' experience, can help us to comprehensively understand the current status of rehabilitation for this group of patients. These findings are expected to guide future designs into effective approaches for seamless integration of these patients into society.
Knowledge and ability gains
The findings of this study indicated that rehabilitation enhances patients' ability to learn more about the disease, improves their medication adherence, boosts their skills such as living ability, social interaction and problem solving. Information regarding the signs and symptoms of schizophrenia, as well as the reasons for relapse is important for patients. This is because once they not only understand that the disease causes many problems, but they are also gain deeper insights into drug efficacy, phenomena that consequently promote their adherence to medication as previously reported [22, 30]. Apart from the psychiatrist’s guidance, members of the rehabilitation group usually exchange knowledge regarding the effects and side effects of medication. Doctors, rehabilitation staff, other patients and family members represent an important social support system for persons with schizophrenia. Previous studies have shown that good social support can increase compliance [31]. Other evidences have demonstrated that the most important treatment approach for controlling schizophrenic symptoms is medication, which can significantly reduce the recurrence and re-hospitalization rates in patients [32, 33]. In addition, improvement of living standards and social ability are closely associated with targeted training during rehabilitation, which also represents one of the most important activities of early stage rehabilitation. Specifically, improvement of patients' problem-solving ability correlated with improved life ability and social interaction. Therefore, community psychiatric rehabilitation centers have proved to be relatively safe places that provide an equal environment for patients to continually practice the skills they learned, thereby improving their problem-solving ability. This is consistent with findings from previous systematic studies [16, 18].
Benefits of friendship, and a sense of personal belonging and value
Patient responses indicated that friendship and fixed social activities are very important benefits of rehabilitation. Specifically, most patients believe that friendship and social interaction have changed their lives, from boring to interesting, and from monotonous to diverse. In fact, the positive energy they have gained gives them full hope for the future. Moreover, they also indicated that community psychiatric rehabilitation centers have given them a sense of belonging. Previous studies have shown that having hope and feeling a sense of belonging are important aspects for improving quality of life [34, 35]. The factors that are mainly considered include improvement of cognition [36], mood [22], skills [23], while friendship and hope are rarely mentioned. In the present study, respondents indicated that they had higher friendships than other improvements, with someone even indicating that friendship was the most important gain. Previous studies have also shown that friendships made under community psychiatric rehabilitation centers are an important social support for patients, while social support is an important factor affecting the quality of life [37, 38].
Reasons for patients’ willingness to participate in rehabilitation activities
This study found that some patients who had recovered for many years no longer benefited from rehabilitation activities, but they still actively participated in rehabilitation and didn't want to leave the rehabilitation group. The most important reason was that they valued the friendships of their group members and were unwilling to lose them. Persons with schizophrenia always isolate themselves and limit their scope of activities due to strong stigma. They lack friends and have a strong sense of loneliness [39]. However, members of the rehabilitation group meet their desire for friendship, and they must continue to participate in activities to consolidate the friendship. Participating in community rehabilitation activities may assist patients in finding new social roles. These can also help in reducing self-stigma and increasing the chances of reintegration into the real world [40]. We speculate that rehabilitation groups, unlike real communities, provide a more comfortable environment free of discrimination, avoidance, and rejection. Therefore, patients don't need to hide and disguise themselves while in rehabilitation centers. Patients in the groups respect, support, and encourage each other, giving them a great sense of happiness and value. All of the aforementioned benefits provide patients with a strong sense of belonging, which is difficult to get in the real society. Their emphasis on and pursuit of belonging has resulted in their high dependence on the rehabilitation group as the status quo. Understanding the reasons enables us to develop new group activities for patients, which can give them the sense of worth and belonging. Patients should be transferred from community psychiatric rehabilitation centers to new groups, leaving the limited rehabilitation to patients who need it the most urgently.
The study also found that rehabilitation activities enriched the quality of life for patients. Daily entertainment for patients is relatively simple at home, where they watch TV, use their mobile phones or go out to exercise alone. On the contrary, rehabilitation activities are diverse and interesting, introducing new experiences to the life of patients. The satisfaction and happiness gained from rehabilitation activities are often greater than those in daily life. Patients are full of expectations for the ongoing rehabilitation activities. To some extent, the expectation has become one of the goals of life for the patients, making it easier for them to cope with daily life.
Difficulties in assimilating into real society
The main obstacles for patients to participate in general social activities are social prejudice and non-acceptance. There have been many previous studies on this subject [25]. The needs for wider social activities for patients have declined significantly because of the social interaction in rehabilitation groups, which has also become an obstacle for the patients. Although previous studies mentioned various benefits of rehabilitation groups [36, 41], they overlooked the fact that this benefit is also a hindrance. Only a few of the patients in this study expressed an interest in other social activities and never participated in them for various reasons. Although most patients expressed no interest in other social activities, it was clear from their attitudes towards rehabilitation that they had a strong interest in social events [42]. Participating in community rehabilitation activities may assist patients in finding new social roles to integrate into the society.. Previous studies proved the need for social interaction for patients. Patients may hide their social needs as a form of self-protection. For self-comfort, patients use "I don't need" rather than "I can't get". Similar to the results in another study, patients mentioned that a lack of friends was not a problem but rather an adaptive behavior [43]. The experience of stigma-based rejection, as well as current social discrimination and exclusion, may perpetuate their negative beliefs about social interactions [42].
Based on an analysis of the basic data of patients who have been in rehabilitation for a long time, we discovered that these patients have a longer duration and a fixed income. Most of them live with their families, which means that they have strong family support. According to Maslow's needs theory, these patients have met the two levels of physiology and safety, so the next goals are the needs for belonging and respect. Because most patients have a sense of family belonging, the need for friendship and social belonging is more urgent and the rehabilitation center simply meets their demand. Previous investigations on the friendships of schizophrenia patients had shown that although the friendship network of the patients was small, the quality of friendship was mostly positive, and patients attached great importance to friendship [43]. Reciprocal relationships between friends are essential for patients to improve response abilities and overall quality of life [44]. A survey on the needs of patients and caregivers showed that personal needs and emotional support (friends, partners, and family members) are the most important to mental patients [45].
Although extensive publicity and education has been done, the general public still knows little about mental illness, and the persons with schizophrenia also subject to high rate of stigmatisation and discrimination [46]. In such an environment, the self-stigma of the patient is aroused. Social stigma and self-stigma cause patients to habitually return to their safe zone (family and rehabilitation center) and avoid the real society. Job opportunities for patients with mental illness benefit from the supportive employment policy of the government, making patients to highly value job opportunities. Because the colleagues in a work environment are normal people, patients often lack self-confidence and fail to pursue more opportunities or resources. Besides explaining disease-related knowledge and skill training (such as daily living skills, social skills, and life skills), the rehabilitation centers provide various sports exercises, artistic treatments, and outing entertainment. The organizers intend for these activities to be used for skill training and social practice. However, for long-term recovery patients, these treatments, entertainment, and social functions are more critical than rehabilitation. Regular rehabilitation programs meet their basic social needs. In summary, routine family life and participation in rehabilitation have become a fixed life pattern for many patients because of the social exclusion and their low demand for social contact.
Reflection and prospects
Understand how patients evaluate rehabilitation and why they stay in the rehabilitation centers can help rehabilitation managers to find solutions to the problem of patients overstaying in the rehabilitation centers. Because psychiatric rehabilitation is a developing field in China, the professional psychiatric rehabilitation providers are not enough. In this study, staff from the Beijing Disabled Persons' Federation and community psychiatrists or nurses collaborated to provide rehabilitation. In addition to rehabilitation work, the community psychiatrists or nurses have many daily management responsibilities, which limits the amount of time available for psychiatric rehabilitation. Every new patient who enters a rehabilitation group needs a series assessment of disease conditions and safety, which require more time from psychiatrists or nurses. Patients continue to participate in community psychiatric rehabilitation, reducing not only the workload of psychiatrists, but also the risk during rehabilitation activities. In the past, this state was suitable because many patients refused to participate in rehabilitation because the benefits of rehabilitation were not well-known, resulting in an oversupply of psychiatric rehabilitation. Recently, the abilities of the patients who joined rehabilitation gradually improved, and they approved the rehabilitation effect and were willing to continue rehabilitation. Because of the good curative effect, an increasing number of patients have been asked to participate in rehabilitation. However, due to staff and space constraints, the rehabilitation centers are unable to meet the rehabilitation needs of patients. Therefore, it is necessary to find suitable outlets for patients who are still stranded in rehabilitation centers after their life and social abilities have improved in order to provide rehabilitation opportunities to more patients with severely damaged social functioning. Rehabilitation is a long-term course that is required at every step from inpatient to outpatient and from returning to family to returning to society. Patients should be classified according to their remnant abilities, and treated with different rehabilitation measures, which requires a significant increase in the number of mental rehabilitation practitioners. Patients who are stranded in the rehabilitation centers have completed the rehabilitation course, and rehabilitation activities are important to meeting the needs of social interactions, the sense of belonging, and value. Development of other social groups and group activities that differ from rehabilitation centers in order to meet their needs maybe a feasible measure. Social workers or volunteers should organize cultural, artist, sports, or other entertainment regularly for the patients only, who can participate in any activity according to their interests. If possible, the government can also provide jobs in the community for well-functioning mental patients. The patients integrate into society gradually as a small group just like in the community rehabilitation centers.
Limitations
This study used purposive and convenience sampling because it was concerned with long-term schizophrenia patients who wanted to participate in rehabilitation. Despite being sampled from multiple communities, all patients belonged to the same area, making it difficult to avoid selective migration. Respondents were voluntary patients, suggesting that they represent patients with the best social function rather than all patients who joined in the long-term rehabilitation. Furthermore, because the interviewer was a psychiatrist, power differentials may have affected negative information expression from the patient, resulting in information bias. Because telephone interviews may lose implicit information in facial expressions, we increased the sample size by 30% after reaching information saturation.
