Persons with severe mental illness and their families have a multitude of unmet psychiatric, physical, interpersonal, and social needs that they are often unable to articulate (
1). These needs currently remain poorly addressed by the health care systems in general and by the existing mental health service components in particular. Accurate appraisal of the needs of persons with serious mental illness in low- and middle-income countries is, therefore, an essential step in planning, providing, and monitoring mental health service provision. This approach has been a central strategy for achieving optimal mental health outcomes in Western Europe and North America (
2). Unfortunately, the mental health services in the post-Soviet Eastern Europe and Central Asia region have not been need directed (
3). In particular, the community-based mental health services, often scarce or unavailable, have been unable to serve individuals with serious mental illness and their families.
Azerbaijan is an upper-middle-income country in the South Caucasus region, which regained its independence after the collapse of the Soviet Union in 1991. Although the mental health system in Azerbaijan has recently been undergoing a process of reform, it remains disproportionately institutionalized, underfinanced, and restricted in terms of the available range of services for persons with serious mental illness with the greatest care needs. In terms of mental health policy, the allocation of services (e.g., the number of staff members, number of hospital beds, and funding levels) is based on traditional indicators, such as the number of inpatient admissions and discharges, number of outpatient visits, and days of hospital stay. Service outcome indicators such as assessment of needs, quality of life, and satisfaction with care are not utilized. The adaptation of mental health–related assessment tools developed in West European and North American countries and careful consideration of their cultural suitability are important steps for improving the conditions of mental health service users in Azerbaijan. The situation is particularly urgent for the care of persons with serious mental illness, as well as their families.
A first attempt to explore the mental health care needs of individuals with serious mental disorders, as well as the beliefs and attitudes toward them in the country, was undertaken between 1998 through 2001. The mental health professionals who contributed in this cross-national collaborative project, titled “Attitudes and Needs Assessment in Psychiatry,” included teams from Azerbaijan, Bulgaria, Hungary, the Kyrgyz Republic, Lithuania, and Ukraine. An overarching goal of the work involved the compilation of focus groups that developed recommendations related to the reform of mental health care systems across the six-country network (
4). This column emphasizes the lessons learned and recommendations based on further needs assessment framework for guiding mental health policy and care systems for persons with severe mental illness and their families in Azerbaijan. Of particular importance is the transitional context of mental health services from a resource-based system to an outcome-based system, with better targeted, culturally informed, and person-centered care provision.
Mental Health Policy Implications of Needs Assessment
The needs of 50 adult patients with serious mental illness and their family members who had applied for outpatient mental health services at the National Mental Health Center in Baku were assessed by using the Camberwell Assessment of Need Scale, which describes problems in life areas that a person with serious mental illness would be unable to manage without help (
5). The greatest number of unmet needs reported by the patients and their families were related to limitations in their daytime activities, intimate relationships, companionship, and socialization. The areas with a minimal number of problems included accommodation, food, telephone usage, and basic education. In addition, clinical characteristics of the patients with serious mental illness, such as the age at onset, duration of illness, number of acute illness episodes, and number of hospitalizations, were also deemed important in the assessment of their met and unmet needs.
In assessing their unmet needs, the patients and their families did not emphasize the reduction of symptoms, lack of availability of psychotropic medications, or co-occurrence of general medical and substance use concerns. The patients and their families expressed that psychological distress related to stigma accompanying the mental illness was a major concern for them. The female patients, compared with the male patients, were less satisfied about getting adequate welfare benefits to which they felt entitled. The female patients also reported less satisfaction with their social circumstances; compared with male patients, they were much less likely to access social and community services. In particular, it should be noted that cultural norms in Azerbaijan often restrict participation in social life, especially for single women. This also helps elucidate why married patients attending outpatient care at the National Mental Health Center reported greater satisfaction with their social life than unmarried patients. Such a needs background of female patients with severe mental illness has immense mental health policy implications in terms of future organization of mental health services, with special attention to their improved social and community inclusion in Azerbaijani society.
The majority of patients with lower socioeconomic status attending outpatient mental health services had reported an unmet need in the availability of close, supportive relationships. The families of patients with lower socioeconomic status and a lower level of education were noted to harbor misconceptions about the danger of patients to others. The families of patients with serious mental illness with upper socioeconomic status and a higher level of education were more concerned about the patient’s safety to self, rather than a societal threat. Such a needs background of patients with serious mental illness with lower socioeconomic status and of families with a lower level of education calls for additional advocacy and a campaign of psychoeducation that augments direct mental health services.
The assessed perspectives of patients with serious mental illness and their families provide broad implications for mental health service planning and care systems in Azerbaijan, as well as for similar systems in post-Soviet Eastern European and Central Asian countries. The need for mental health services clearly exceeds the actual level of help that patients with serious mental illness and their families receive. A most prominent concern is the level of psychological distress related to perceived stigma, as a result of the lack of knowledge of severe mental illness, leading to patients’ limited social and community participation. The perspectives among the patients and their families confirm that persons with severe mental illness are among the most excluded groups in society. Without question, stigma and discrimination contribute to the social exclusion of persons with severe mental illness, but the misperceptions of their condition compound the psychological distress they face and the medical burden of their illness, leading to restraint, incarceration, and heightened risk of institutionalization. These are important historical lessons that have been learned in the improvement of conditions of care of persons with serious mental illness in Western European and North American settings.
A troublesome reflection among patients and families with lower socioeconomic status was that they did not actually endorse more needs, compared with those with higher socioeconomic status. This paradox has also been noted in the Epsilon study involving five Western European countries—Denmark, Italy, the Netherlands, Spain, and the United Kingdom—which aimed to produce standardized measures in key areas of mental health service outcomes (
6). The total-need scores, including unmet needs scores, among the patients with serious mental illness and their families in Azerbaijan were actually higher than those in the Western European context. Therefore, it is not surprising that, in contrast to those in the Epsilon countries, mental health and social care systems in Azerbaijan are still inadequately developed to address the needs of persons with severe mental illness and their families. This underscores an overall level of poor awareness and an important socioeconomic and educational divide in the mental health care system in Azerbaijan: Both need to be targeted in the future organization of mental health service delivery.
Another important observation in Azerbaijan, compared with the Epsilon countries, was the lower level of endorsement of unmet needs among female patients compared with male patients. This again reflects an important gender disparity, likely fueled by cultural attitudes in the acquiescence of female patients to societal expectations of their emotional expression and cultural role, despite similar levels of unmet needs when compared with those of male patients. This was not necessarily true for the female family members of patients with serious mental illness, who noted higher levels of total needs and unmet needs compared with those noted by the patients, highlighting their concern and involvement in caregiving roles for their loved ones. Family caregivers are an untapped resource and should be incorporated as a unique strength in addressing the exclusion of female patients with severe mental illness and in enabling their empowerment through family support.
The correlation of total-need scores with greater severity of mental illness and greater burden of reported unmet needs among families of patients with higher socioeconomic position is encouraging. This may bode well for the future in that greater socioeconomic and educational advantages may heed greater insight about mental health needs and expected outcomes; indeed, the Pygmalion effect once described by Robert Rosenthal underscores that a higher level of expectations leads more favorable change in a climate of care, with a greater degree of family and community input, social stimulation, positive feedback and a lesser degree of acceptance of low-quality conditions of care (
7). These insights ought to be incorporated in the design of mental health policy that can lead to more acceptable and accessible community care. The experience at the National Mental Health Center in Azerbaijan is consistent with the findings noted by Landolt and colleagues (
8), who considered patients’ clinical characteristics to not be as good a predictor of unmet needs, because psychosocial problems may persist among patients who lack additional supports and interventions. In this regard, unmet needs—in particular, those related to patients’ social relationships—seem to be more important for improving service outcomes.
It is important to inform mental health policy perspectives by identifying nationally representative patients with serious mental illness, including rural as well as urban populations. An advantage of providing mental health care services in ambulatory care centers in the community, as well as the involvement and support of families, is that it will mitigate the outcomes involving long-term psychiatric hospitalization and institutionalization that currently characterize the care of patients with severe mental illness. In this regard, the nationally (and regionally) organized mental health “centers of excellence” formulating mental health policy can serve as an important resource for the country and the region as well as an impetus for collaborative research projects. Such a framework is likely to promote the development of national standards of care as well as the application of international guidelines in the care of persons with serious mental illness who are not entirely restricted to urban or socioeconomically privileged catchment populations.
Conclusions
Unsurprisingly, the need for services for persons with severe mental illness far exceeds the actual amount of help received by patients and their families. The stigma toward persons with serious mental illness in general, as well as the greater level of psychological distress related to the misperception of their condition, is particularly problematic among female patients compared with male patients, with a correspondingly poor level of perceived social supports and social inclusion. There is an urgent mental health policy gap that needs to be addressed for the enhanced care and social participation of female patients with serious mental illness. Similarly, future mental health policy considerations need to recognize that families with higher socioeconomic status express greater needs among their loved ones, reflecting a greater level of awareness and greater expectations for support. Nevertheless, the total needs correlate with illness symptom severity across all socioeconomic levels, and they are not unique to families with higher socioeconomic status.
In terms of a distributive public health perspective, mental health policy must be planned prudently in order to design care systems for persons with severe mental illness based on objective assessments of illness severity as well as cultural and geo-access factors. Given that rural community-based services often are unavailable or inadequate, there is a need to develop the capacity in the workforce to locally better serve patients with serious mental illness and their families across the country. A culturally informed approach that takes into consideration objective and person-centered assessment of illness severity is inescapable in building better targeted mental health care for persons with severe mental illness (
9). Such a framework is likely to be more immune to the imbalance of needs created by important gender and socioeconomic disparities. As it stands, the care of female patients with serious mental illness, especially among families with low socioeconomic status, is a major mental health policy challenge that needs to be urgently addressed.