Abstract
Community-based care of people with mental illnesses has gained a wide popularity during the previous four decades. There is a world-wide paradigm shift from hospital to community which is evident from far-reaching policy changes in a number of countries [1]. In spite of this popularity, a mixed result has emerged from the studies evaluating the effectiveness of community-based care of the mentally ill. Long-term follow-ups of community-based schizophrenia patients have shown a symptom-remission rate of 22–26% and poor social functioning in 25–35% of patients [2, 3]. Similarly, Munk-Jorgensen [4] has reported an increase in suicide and readmission among community-based mentally ill. Websters et al. [5] have reported a doubling of the number of forensic patients and Torrey [6] and Koegel [7] have reported a significant increase in imprisonment and homelessness among community-based mentally ill patients. Pertaining to the quality of life of communitybased psychotic patients, Jablensky et al. [8] have reported high rates of functional impairment and disability, decreased quality of life, extreme social isolation and limited availability of community-based rehabilitation for patients living in the urban areas of Australia. This indicates that developed countries such as Australia have similar challenges for community-based patients with severe forms of mental illnesses as those living in developing countries. Alternatively, Wilkinson et al. [9], Mason et al. [10] and Thara and Eaton [11] have reported significantly high recovery rates among community-based patients with severe mental illnesses.
In addition to this inconclusiveness of the rate of success of community care of the mentally ill, there are other factors limiting the generalisability of the outcome studies. Firstly, most of the reviews have focused on selected groups of patients with specific inclusion criteria. Secondly, there are wide variations in the formulation and implementation of mental health policies among different countries. Some countries took great initiatives in implementing the community-based care of the mentally ill while other countries still have culturally-orientated dilemmas in accepting the concept of community-based care of the mentally ill. For example, community care has been in place for four decades in most developed countries, but at the same time, most developing countries face the challenge of gaining their community's recognition for the concept of treating mentally ill patients within the community environment [1]. Therefore, it is very much likely that the milestones achieved by these countries in implementing community care of the mentally ill are unique to their own cultural and socioeconomic factors. It is important that these unique characteristics are taken into account while studying the outcome of community care programs for the mentally ill. From this point of view, the outcome studies on community care need to focus on specific countries and their cultural and socioeconomic characteristics. Thus it can be argued that very few attempts have been made to study the outcome of community-based care of psychiatric patients in specific Asian countries other than studies such as WHO's International Pilot Study of Schizophrenia and Tara et al. [12].
Yet another important issue is that most of the reviews on community care have focused their attention on symptom recovery and frequently use it as a criteria to measure the success rate of community care programs. However, this may not be adequate to understand community-based psychiatric patients in the Asian context, mainly because disability due to psychiatric symptoms alone is not the problem. These patients face many other challenges, such as marginalization and discrimination due to wider community-related problems such as stigma attached to mental illness and limited rehabilitation resources available within the community [13]. Therefore, attempts to study wider issues such as quality of life (QOL) can significantly enhance the understanding of psychiatric patients living in the community. Very few attempts have been made to study the QOL of mentally ill patients in the Asian context and to the knowledge of the writers no studies have been reported on the QOL of community-based severely mentally ill patients in Malaysia.
Malaysia has been a serious advocate of communitybased care of people with severe forms of mental illnesses. In 1997, the National Mental Health Policy of Malaysia was enacted in which one objective was to improve community-based psychiatric services and to encourage the provision of care and protection by the family, community and community-based agencies [14]. Community mental health teams were formed in many treatment centres around the country. Outpatient treatment for mentally ill patients has become the policy of almost all the psychiatric treatment centres. As a result of these new developments, thousands of severely mentally ill patients have been living in these communities in recent years. However, to the knowledge of the writers no systematic reviews have been reported on the life-conditions of these patients. Such reviews are very much needed for policy-making in Malaysia. There are many other countries in the ASEAN region which have similar cultural and socioeconomic characteristics to Malaysia. These countries will also benefit from these reviews. Keeping this in view, the present research was conducted, aiming to study the quality of life of community-based schizophrenia patients in Penang, Malaysia.
Method
Sample
Data were collected from 174 persons suffering from schizophrenia who were undergoing treatment at the Outpatient Department of the Department of Psychiatry, Penang General Hospital. Three criteria were used for sample selection of patients: (i) the patient had to have a formal diagnosis of schizophrenia of any subtype using DSM-IV criteria [15]; (ii) there had to be documentary evidence of a minimum 2 years illness duration; (iii) respondents fulfilling these criteria had to be living in the community with a family member or caregiver. In total, 174 respondents participated in the study.
Materials
Details on background and illness characteristics of the respondents were collected through a questionnaire prepared by the researchers. The Quality of Life Interview (QOLI) [16] was used to collect the information related to quality of life. The QOLI was developed specifically for persons suffering from severe forms of mental illness and it measures QOL in eight domains: life satisfaction in general; living situation; daily activities and functioning; family social relations; work and school; legal and safety issues; health; and an overall rating of the quality of life. The QOLI assesses each of these domains in terms of what patients actually do and experience (objective QOL) and their feelings about these experiences (subjective QOL or satisfaction). The objective QOL indicators included in the QOLI are of two types: measures of functioning (e.g. frequency of social contacts or daily activities); and measures of access to resources and opportunities (e.g. income support or housing type). The subjective QOL is scored on a fixed interval 7-point scale ranging from ‘1. Delighted’ to ‘7. Terrible’. A chart with seven images from feeling delighted to terrible was also used whenever a respondent had problems comprehending the response categories. The psychometric properties of the QOLI have been extensively researched and supported [16]. All the items included in QOLI were translated into Bahasa Malaysia language using back-translation technique.
Procedure
Initial contacts with the study respondents were made at the Outpatient Department, Department of Psychiatry, Penang General Hospital. All the respondents who were contacted fulfilled all three study criteria, implying that the study criteria represent a wide patient population group in the community. Out of 200 respondents approached by the researchers, 174 agreed to participate in the study. The respondents who signed up to participate in the research were visited at their homes and the data were collected through a face-to-face interview with the patients.
Result
Table 1 presents the background characteristics of respondents. The mean age of the patient sample was 44 years. A majority of patients were secondary school educated, followed by primary school educated and illiterates, respectively. Almost equal numbers of males and females participated in the study. Mean monthly income of the patients was Ringgit Malaysia 366 (Equivalent to US$96.32) and a majority of them were never married, followed by married and divorced, respectively. The occupational background indicated that 42% of the respondents were employed and a majority of them were employed in unskilled jobs. Mean illness duration of the study sample was 14 years and pertaining to their symptom severity, 8% had experienced severe psychiatric symptoms, 41% had moderate and 52% had mild symptoms.
Background characteristics of patients
The scores on the 7-point scale on subjective QOL were summed to derive mean subjective QOL scores for each domain. The percentage distribution of the respondents in each response category for objective and subjective QOL indicators are presented in Tables 2–5a,b. Tables 2a, b are based on QOL in the areas of life in general, living conditions and daily activities. The subjective QOL in the area of life in general revealed that at least 38.5% felt uneasy about their life in general. Pertaining to the living conditions of the study samples, 72% of the respondents were living in their own houses followed by 28% who lived with others. When asked about subjective QOL in their living conditions, approximately one-third of the respondents expressed dissatisfaction. The objective indicator of QOL in the area of daily activities revealed that approximately one-third of the respondents were not performing most of the daily activities. The objective indicators in the areas of hobby, sports and going to the park indicated that only a few respondents were performing these. The subjective reaction of the respondents toward their daily activities revealed that at least 21% were not satisfied with the way in which they performed their daily activities.
Objective quality of life – living conditions and daily activities
Subjective quality of life – in general, living conditions and daily activities
Tables 3a,b are based on objective and subjective indicators of QOL in the area of family and social contacts. Most respondents reported that they talked and got together with their family members at least once a day. When asked about their personal satisfaction with these family interactions, 19% expressed less satisfaction. Pertaining to objective indicators of QOL through social contacts, 22% were found to have never visited someone who is a close relative and 40% never telephoned, 46% never did something with and 45% never spent time with someone considered as a close friend. When these respondents were asked about their subjective satisfaction with social contacts with others, 18% of the samples expressed dissatisfaction.
Objective quality of life – family and social contacts
Subjective quality of life – family and social contacts
Tables 4a,b are based on the objective and subjective indicators of QOL in the areas of finance and work. The objective indicators of finance revealed that 53% of the respondents were financially dependent on their family/spouse and 41% were dependent on their own income. When asked about adequacy of money available to meet basic survival needs, approximately one-fifth had inadequate money to buy food, clothing and housing, 26% and 35% had inadequate money for transportation and social activities, respectively. When asked about their subjective QOL in the area of finance, approximately half of the respondents expressed their dissatisfaction. Pertaining to QOL in the area of work, the objective indicators revealed that only 42% of the respondents were working and a majority of them were involved in unskilled jobs. Among those who worked, 71% worked more than 43 h per week and 88% earned a monthly salary of RM.200 and less. When asked about their subjective life quality in the area of work, approximately one-quarter expressed dissatisfaction about the income earned from work and the work environment.
Objective quality of life – finance and work
Subjective quality of life – finance and work
Pertaining to the QOL in the areas of safety, health and overall subjective QOL in general [Tables 5a,b, 4% of the study subjects were victims of crime and 11% were victims of non-violent crime. Their subjective QOL revealed that 13% of the respondents were concerned about their personal safety within their home and in their community. In the area of health, approximately one-third of the respondents expressed their dissatisfaction toward both objective and subjective indicators of their general and emotional health. When the respondents were asked to assess their subjective QOL based on all the indicators of QOL, namely, life in general, living conditions, daily activities, family, social relations, finance, work, safety and health, approximately 79% of the study subjects were subjectively not satisfied with their life quality in general.
Objective quality of life – safety and health
Subjective quality of life – safety, health and overall subjective QOL in general
Discussion
The background characteristics of the study subjects revealed that both males and females were represented in equal numbers, a majority of them were aged approximately 45 years with mean illness duration of 14 years. Based on the personal observations of the researchers, it can be argued that many of the facts reported in this research paper are applicable to all the other states of Malaysia.
The item on respondents’ overall life quality appears twice in Lehman's Quality of Life Interview [16]: as a first question in the beginning of the interview and again as a last question at the end of the interview. While the first question asks the respondents to assess their life quality in general, the last question specifically asks them to measure the life quality in general after giving due consideration to all the domains of QOL covered in the interview. A major advantage of this method is that the respondents are helped to think about their life quality in all the areas covered in the interview and to make a comprehensive assessment of their life in general. When asked in the beginning of the interview, only 40% of the study sample expressed dissatisfaction with the quality of their life and this number almost doubled when the same question was repeated at the end of the interview. This indicates that the respondents were able to make a comprehensive assessment of their life quality and that a majority of them were not satisfied with their overall quality of life.
A similar trend was observed in almost all the other variables included in the present research. Specifically, QOL in the areas of place of living, daily activities, social relations, finance, work and general health revealed that the people with chronic schizophrenia living in the community faced many challenges in their day-to-day life. Approximately one-third of the respondents were not satisfied with the QOL in their place of living, implying problems confronted by them in one of the basic survival needs: shelter. A vast majority of the respondents lived with their own families and onethird of them were not happy about this arrangement and required changes in their accommodation arrangements. Even though problems related to accommodation for the severely mentally ill has been widely discussed in Malaysia for many years, until now not much has been done to solve the problem. For example, Ramli et al. [17] has emphasized the importance of establishing group homes in Malaysia. Creation of accommodation facilities suitable for people with severe mental illnesses can solve the problems of both the mentally ill and their caregivers. Many illegal homes can be seen all over Malaysia in which severely mentally ill people are admitted by paying exorbitant fees. In these homes patients often live in unhygienic living conditions with no professional supervision or help. This raises serious ethical questions about the safety and wellbeing of such people. Even while knowing the conditions existing in these illegal homes, increasing numbers of families prefer their mentally ill members to stay in them. This is evident in the large number of such homes mushrooming in the recent years [13].
In the area of daily activities, the objective indicators of QOL revealed that approximately one-third of study samples were not performing even the usual daily activities such as going for a walk, riding in a bus/car and going for shopping or to restaurants/coffee shops. Only a very few had taken part in activities such as sports and going to the park. When asked to rate the subjective QOL from daily activities, only 21% of the respondents expressed dissatisfaction, implying that almost 80% of the respondents were probably not aware of the gross inadequacies in their daily activities. Daily activities are a major part of rehabilitation for people with severe forms of mental disorders and the present research indicates that a majority of its respondents were not involved in any kind of rehabilitation programs that will encourage their participation in daily activities. Tables 4a,b also indicate a similar trend wherein none of the study samples were taking part in any vocational programs.
The objective indicators of QOL from social contacts indicated that approximately half the study subjects had problems in maintaining social contacts with people living in their social environment. A wide gap existing between people with schizophrenia and the members of their community is evident from this observation. Stigma attached to mental illness in Malaysia [14] could be a major reason for this observation. Social contacts and social support networks play a crucial role in symptom reduction and social adjustment of schizophrenia patients [18]. Yanos et al. [19] using the Lehman's Quality of Life Interview have reported social interactions as significantly associated with both subjective and objective quality of life. The social isolation observed among nearly half the present study subjects indicate that persons with schizophrenia are grossly isolated and marginalized by the community and it is possible that this may have serious effect on their treatment outcome and symptom recovery. Further, the level of preparedness on the part of the community in recognizing and respecting the integrity of people with mental illnesses is crucial for the success of any community mental health program. The present research indicates problems in the community's preparedness to accept and recognize the social needs of the mentally ill in Penang. Hence, reviews on the extent to which the Malaysian community is prepared to accept people with schizophrenia is much needed for a successful implementation of the National Mental Health Policy [20].
Prevalence of poverty among people with schizophrenia is evident from the results on objective indicators of QOL: finance. More than half the respondents were financially dependent on others and nearly onefifth of the respondents had no money even to take care of their basic survival needs such as food, clothing and shelter. The subjective assessment on QOL reflected a similar trend wherein approximately half the study subjects were not satisfied with their financial conditions. Earlier work in the United Kingdom [21] has reported a similar trend wherein people with severe mental illnesses who had poor financial resources had expressed poor quality of life. Despite this, the source of income of the present study sample (Tables 4a,b) reveals that only 2% were receiving social welfare assistance and none of them were undergoing any vocational or other rehabilitation programs. In other words, none of the communitybased schizophrenia patients were receiving rehabilitation or financial assistance from the Government or NGOs. This indicates that implementation of the National Mental Health Policy's aim of creating psychosocial rehabilitation facilities in Malaysia [20] needs a critical review. Penang is the capital city for the State of Penang and to the knowledge of the researchers no rehabilitation facilities are in place for people with severe forms of mental illness.
The QOL: work revealed a similar trend wherein 42% of the respondents were unemployed and dependent on others for survival. For those who were employed, the present study revealed that most of them were working in an unethical and discriminatory work environment. A majority of the employed respondents worked in unskilled jobs and were working for more than the normal 43 h per week. In spite of this hard work, 88% of the respondents were paid a monthly salary of RM.200 (Equivalent to US$52.63) and less which is well below Malaysia's per capita income of RM.815 (Equivalent to US$214.50) [22]. Treatment and rehabilitation of severe mental illnesses can be a costly process. For example, Carr et al. [23] based on a large-scale study in Australia have reported that managing psychotic symptoms can be expensive, leading to a poor quality of life for patients. While people with mental illnesses may receive a welfare payment in Australia, their counterparts in Malaysia receive nothing from the Government. Hence, it is obvious that a majority of the present study subjects must be undergoing severe financial hardship significantly affecting their quality of life. Further, discrimination and exploitation of the mentally ill in their workplace is evident. Based on this observation, it can be argued that poverty of persons with severe mental illnesses is not necessarily due to the disabilities of schizophrenia symptoms, but it may be due to inadequate opportunities available to engage themselves in a work environment that is non-discriminatory and competitive. To the knowledge of the researcher no legislative measures exist to enforce equal employment opportunities for the mentally ill in Malaysia. In addition to this, establishment of rehabilitation facilities in the community will also increase the opportunities for people with schizophrenia to alleviate their poverty and this will also enhance the quality of the rehabilitation process in the community.
Quality of life in the area of physical and emotional health indicated that approximately one-third of the respondents were concerned about their own physical and emotional wellbeing. This is a surprising observation because the present study respondents were patients receiving psychiatric treatment at the Out-Patients Department of the Psychiatry Unit located in the Penang General Hospital. This is a State Headquarters hospital for Penang with all general health specialist clinics. The results herein imply that at least one-third of people with schizophrenia were not having adequate access to general health services available in the same hospital. The psychiatric service providers focusing their attention mainly on schizophrenia symptoms neglecting the patients’ general health and emotional wellbeing could be a reason for this observation. Yet another reason could be that general health services have been privatised in Malaysia and medical expenses have gone up significantly in recent years. People suffering from mental disorders are not covered by insurance schemes in Malaysia [24] and this may seriously limit access to general health services. Whatever the reason, it is obvious that in spite of integrating psychiatric services with general health facilities, there seems to be a problem for psychiatric patients in accessing general health care for at least one-third of the study respondents.
These research findings can also be discussed from a wider perspective in terms of the life-conditions of mentally ill patients living in the cities of neighbouring countries in the ASEAN region. Most of these cities have similar social and cultural belief systems pertaining to mental illness and the mentally ill. Even though it can be argued that countries such as Malaysia, Singapore and Brunei enjoy better economic growth than other countries in the region, the advantages of this economic growth are not enjoyed by people with severe forms of mental illness. Therefore, the observations of the present research are relevant to other cities in ASEAN region. The issues related to QOL of the severely mentally ill in this region need further research attention and the challenges involved in policy-making for the welfare of these patients need more attention at a wider international level.
Conclusion
Quality of life is a major area of concern for patients with chronic schizophrenia; specifically, quality in the areas of life in general, place of living, daily activities, social relations, finance, work and general health. The deprivation of opportunities for mentally ill patients is evident from the present study. Also evident is the lack of preventive measures to safeguard the mentally ill from exploitation and marginalization. The problems identified in the areas of place of living, social functioning, finance and work indicate the need for more housing and rehabilitation facilities in Penang. Based on this observation, we argue that creation of such communitybased rehabilitation facilities are crucial for implementation of community-based treatment of severely mentally ill patients in Malaysia. This research also highlights the need for reviews on outcome of community-based treatment programs for the mentally ill in South-East Asia.