Mental health care services are shifting its focus from inpatient to community care. Community based psychosocial rehabilitation programmes are widely advocated to provide comprehensive care to persons with mental illness. Psychosocial interventions suiting the needs of persons with mental illness would be more viable and sustainable in terms of recovery and socio-occupational functioning and integration in the community. This outpatient based study conducted in the North-East Region of India, at Central Institute of Psychiatry, Ranchi attempted to assess and compare the subjective rehabilitation needs of persons with Schizophrenia and Bipolar Affective Disorders. 120 persons with Schizophrenia and Bipolar Affective Disorders (60 from each category) were sampled and studied using Rehabilitation Needs Assessment Schedule (Nagaswami et al., 1985). Results indicate that both the studied groups exhibited multiple needs, thereby emphasizing the role of multifaceted, comprehensive after-care packages, involving concerted efforts of several mental health facilities.
Key Words: Rehabilitation needs, Schizophrenia, Bipolar affective disorder, Remission
Assessment of needs in mental illness is an essential step in planning, developing and evaluation of mental health services, to provide requirements of mental health services, to provide requirements of persons with mental illness and to enable them to achieve, maintain or restore an acceptable or optimal level of social independence or quality of life. The persons with serious mental illness constitute an incredibly diverse population, numbering in millions, shares needs unique to themselves in the areas of treatment, rehabilitation, and environmental support. In recent years assessing the needs are given more importance in order to give proper care to the persons with mental illness.
Although the concept of need is used internationally, there is no consensus about the precise meaning of the term. Psychological theories have employed concepts of need as a basis for understanding action, such as Maslow’s hierarchy of needs (Maslow, 1954). Mental health professionals; by contrast, use measurement of need to inform service provision. In Britain the National Health Service and community Care Act (1990) defines needs as “the requirements of individuals to enable them to achieve, maintain, or restore an acceptable level of social independence or quality of life” (Department of Health social services Inspectorate, 1991; p.10).This definition equates need with level of social functioning. Thus need arises as a result of social disablement, which occurs when a person experiences lowered psychological, social and physical functioning in comparison with the norms of society (Wing, 1986).
Disability is an important medical and social concept. If a person is unable to perform an activity, which he is otherwise expected to perform because of his illness that is termed as disability. Since psychiatric disorders manifest in social context, disability due to them is generally termed as “social disability” (Taly & Murali, 2001). WHO defines disability as an inability to participate or perform at a socially desirable level in such activities as self care, social relationships, work and situationally appropriate behaviour. The disability caused by mental and neurological disorders is high in all regions of the world. Six neuropsychiatry conditions figured in the top twenty causes of disability in the world are unipolar depressive disorders, alcohol disorders, schizophrenia, bipolar affective disorders, Alzheimer’s and other dementia’s and migraine (WHO, 2001).
People with psychiatric disabilities experience numerous limitations in everyday functioning, some of which include difficulties with interpersonal situations, (e.g., misinterpreting social cues, inappropriate responses to situations), problems coping with stress (including minor hassles, such as finding an item in a store), difficulty concentrating, and lack of energy or initiative (Bond, 1995). Whether persons with psychiatric disabilities have never learned social skills or have lost them, most of these individuals have marked skill deficits in social skills and interpersonal situations (Bond, 1995).
People with any disabling condition must face the task of adjusting to their conditions, disabilities, and to their environment. A consistent theme over the years in rehabilitation has been the focus on the needs of the individual and the inclusion of the person with a disability in the planning process. Care and protection are not the operational concepts of rehabilitation, but rather partnership, planning, and action steps leading to consumer outcomes. W.H.O. (1995) defined psychosocial rehabilitation as a comprehensive process that offers the opportunity for individuals who are impaired, disabled or handicapped by a mental disorder to reach their optimal level of independent functioning in the community. A more practical description of rehabilitation might be the process engaged in by people with disabilities to define individual or person-specific goals, develop action steps to achieve those goals, and identify resources that can be accessed to meet those goals.
Thus the goal of psychiatric rehabilitation is to enable individuals to compensate for, or eliminate the functional deficits, interpersonal barriers and environmental barriers created by the disability, and to restore ability for independent living, socialization and effective life management. Interventions help the individual learn to compensate for the effects of the symptoms of the illness through the development of new skills and coping techniques, and a supportive environment. They also counteract the effects of the secondary symptoms by restoring a sense of confidence and building on the strengths of each person, emphasizing wellness rather than illness (Hughes, 2001).
Not all people with serious mental illness need psychiatric rehabilitation services. A frequently used method of defining the population in need at any given time is to look at a combination of diagnosis, duration and level of disability The most frequent diagnoses of persons needing psychiatric rehabilitation services are schizophrenia, manic depressive disorders and depression, and severe personality disorders.
Duration refers to the chronicity of the disorder and usually means a series of hospitalizations, a series of relapses of the illness, or symptoms which remain over a period of years. The last criterion, disability, is particularly important for assessing the need for psychiatric rehabilitation services and refers to the impaired functioning of an individual due to the illness (Hughes, 2001).
Assessing forms of ‘felt needs’ are an important constituent in the planning of mental health services (Wig & Srinivasamurthy, 1981). This would suggest that the first step towards programme planning and delivery of after-care services would be the proper evaluation of subjective needs. Assessment helps those persons with mental illness to communicate clearly about their difficulties. The mental health professionals are concerned with assessing the person’s unmet needs that are sufficiently serious to merit interventions by service. For the care-givers, the assessment is an opportunity both to act as advocates for the mentally ill and to help them access support and services, themselves. The other purpose of assessment of rehabilitation needs is to make various social and political concerns aware of the persons with mental illness and initiate them to take necessary steps to improve their quality of life.
There are few attempts in India to assess the rehabilitation needs of persons with mental illness. Nagaswami et al, (1985) conducted a study on Schizophrenia (n=59) and found that employment and vocational rehabilitation were most sought need, psychosocial rehabilitation less so, and accommodation hardly at all. The same study concluded that both men and women had identical needs. Regarding the rehabilitation needs of the patients with bipolar affective disorders a published study could not be found.
Aims & objectives
The primary aim of the current study was to assess and compare the subjective rehabilitation needs of persons with Schizophrenia and Bipolar Affective disorder. Gender deference in the rehabilitation needs also was studied.
Materials & Methods
It was a cross-sectional out-patient based study conducted in Central Institute of Psychiatry, Ranchi, India. Sampling was done in such a way that those fitting to the inclusion and exclusion criteria were included in the study. Equal number of two out-patient groups, 60 each between 18 to 60 years age, equal number from both sex, with diagnosis of Schizophrenia or Bipolar Affective disorder (according to ICD-10 DCR), with two years duration of illness, currently in remission, was selected for the study. A need was felt to exclude persons with gross psychosis, since such persons are known to be unable to express their rehabilitation needs. Psychopathology offers only a limited view of the overall functioning of Schizophrenia (Lukoff et al. 1986). Persons with mental illness with any organic illness, co-morbid diagnosis of any major physical or other psychiatric illness or substance dependence were also excluded. A key informant who was living with the person with mental illness at least since last 2 years were interviewed using the Rehabilitation Needs Assessment Schedule (Nagaswami et al, 1985) for measuring subjective rehabilitation needs.This is designed to collect purely qualitative information on the subjective rehabilitation needs. The questions are open-ended and cover the areas of employment, vocational training/ guidance, accommodation, leisure activities, psychosocial attitudes modification, skills training, any help needed by the family any other area. Except for items 6 & 7, which is asked of the key informant, all other items are asked to the person with mental illness. Initially the person with mental illness is just asked if he or she wants any help aside of during treatment. Subsequently, he or she is asked if there is any specific need in any of the areas outlined above. The instrument is meant for qualitative rather than quantitative data and therefore requires no standardization.
Informed consent was obtained from the participants & the key informants for the study. The case record file (CRF) was reviewed to confirm the diagnosis and to know the necessary clinical variables. Then Rehabilitation Needs Assessment Schedule was administered.
Result and Discussion
(Table 1) Mean age of the BPAD group was 32.8 years and that of the schizophrenia group was 33.4 years indicating that the sample was similar in Age. There is no difference between the two groups in education and marital status. Majority of the participants were Hindus and the rest were Christians and Muslims which indicate the general religious background of the country. The patients belonging to the reserved category and general category were similar in both the groups. There is a difference between monthly incomes of both the groups. Patients with BPAD, with a rural background were more included in the study as compared to patients with Schizophrenia in which the rural urban dimension was equal. A total of 87.5% patients belonging to both the groups together, were engaged in some kind of productive work before the onset of the illness. Currently, only 65.0% patients of both the groups together are employed. Cole et al (1964) had found that 62 percent of the patients they surveyed were employed before admission, but only 43 percent afterwards, thereby showing a substantial reduction in the employment rates before and after admission. A South Australian study also found that 88% of people discharged from a psychiatric hospital remained unemployed (Barber, 1985).
The total number of patients currently unemployed in both the groups rose to 35%, which was 12.5% prior to the onset of illness. Out of these 35% patients, 15.8% attributes the reason for the same to their mental illness. Patients in both the groups being unemployed due to their mental condition invite our attention to this factor. Birley and Hudson (1983) have shown that whether a patient seeks employment will be a function of the correspondence between the work-needs and the work-rein forcers actually experienced. It seems very likely that patient who is been out of work for a long period will not be able to do this well. A crucial comparison that needs to be highlighted is the satisfaction that would be provided by whatever work available and the satisfaction provided by unemployment; the relative satisfaction afforded by different jobs is a secondary matter.
A promising approach which might be of use is stimulated work environment such as sheltered work outside the hospital as a final bridging stage to open employment. Enthusiasm and education regarding value of work and strategies to make enjoyable whatever work available would go a long way particularly for the institutionalised set-ups. Collaboration with NGO’s or the Indian Industries will also help. (Gandotra S et al., 2004)
21.7% patients with BPAD and 20.0% patients with Schizophrenia wanted some help regarding finding employment. Work provides financial remuneration and is a normalizing experience, allowing individuals to participate in society, and may promote self-esteem and quality of life. Furthermore, the vast majority of persons with severe mental illnesses identify paid employment as one of their goals (Rogers et al. 1991).
10.0% patients with Schizophrenia (5.0% male and 5.0% female patients) wanted vocational training. A study by Anthony et al. (1978) shows that rates of competitive employment for persons with schizophrenia remain dismally low -- below 25 percent. In this context, vocational rehabilitation has assumed increasing importance as part of the array of services available for persons with schizophrenia. Vocational training should be directed towards skilled tasks like printing and baking (Nagaswami et al, 1985), specialized industrial work like turner, fitter, etc and unskilled repetitive work is probably best restricted to Occupational therapy. This need calls for an up-to-date occupational therapy infrastructure in the institutional set-ups and sheltered workshops in the community along with trained staff to deal with such population.
95% patients with BPAD and 91.7% patients with Schizophrenia do not require any kind of accommodation. Majority of the patients in both the groups reside in their own house. Carling (1993), had also observed that mental health consumers prefer to live independently in their home with a friend or loved one, rather than in a ‘therapeutic’ facility. Tanzman (1993), in a review of 43 studies of mental health consumer’s preferences, support this viewpoint.
Leisure is not perceived as a major need by majority of the patients. Most of the patients across both the group opted for passive recreations like listening to radio, watching TV, and reading books and magazines. Group-meetings, discussions, physical exercise etc figure out low on the priority list in both the groups. The finding should be interpreted in the light of socio-cultural norms regarding the role of leisure.
Most patients require modification of the immediate family’s attitude followed by modification of attitudes of friends and neighbours. This would suggest that psycho educational approaches (Anderson et al 1980) would be a fertile ground of intervention research. Further, the finding also emphasizes the importance of assessing specific family needs in caring for a relative with mental illness. Chien & Norman (2003) in a study found that educational needs perceived as important by caregivers included gaining information about early warning signs of illness and relapse, effects of medication and ways of coping with patients' bizarre and assaulting behaviour.
Care-givers of 14.5% of the total patient population had asked for some kind of help like finding employment for some member, educating other member of the family, vocational training for some member of the family, financial help, etc which merely reflects the social problems of poverty and unemployment. With the available resources, or rather the lack of them, it would be impossible to rehabilitate the family as well, unless voluntary care agencies care agencies are sufficiently motivated in this direction.
The informants of 20% patients with BPAD and 23.3% with Schizophrenia (40.0% male patients and 3.3% female patients) wanted social skills to be taught to the patient. This could be probably due to the negative symptoms among the patients. When negative symptoms persist, it is conventional to recommend use of psychosocial interventions such as token economies, social skills training, life skills training, self instructional training and problem-solving (Slade and Bentall, 1989). The cultural expectation that males should work for the family, should be more social and interactive with people outside the family could be a probable reason for more male patients requiring social skills training.
Implication for mental health professionals
The needs of the patients studied clearly shows the need for a decentralised community based rehabilitation services that are locally available and sustainable. In an Indian context where most of the patients come from rural agrarian background, the scope of providing care under the national mental health programme frame work and developing community participation by raising stake holders in community based rehabilitation activities deserves more importance. Educating patients and their care givers about simple home based rehabilitation practices that can be carried out in homes is seen effective. In this process learning the basic principles of work- behavioural management, identifying various activities in home and around that can be given to the patient as activity and supportive handholding given to the patient and caregivers by professionals, paraprofessionals or trained volunteers can help the patient very well in rehabilitation. Ensuring the patients’ rights and upholding the best practices in community participation holds the key for effective rehabilitation.Conclusion
Individualised tailor made-programme would have to be charted out. Sex should not be a bar to rehabilitation and the emphasis should be on vocational rehabilitation, job-placements, family interventions and various psycho-social therapies. All the patients with BPAD and Schizophrenia should be offered a programme as soon as they recover from their breakdown and help should be sought from voluntary agencies in setting up sheltered workshops and other aftercare services. This, while not solving all the problems of patients with BPAD and Schizophrenia, might be one of the means to an end.
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