Chapter 3: Solving Mental health problems:
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Principles of care
The idea of community-based mental health care is a global approach rather than an organizational solution. Community-based care means that the large majority of patients requiring mental health care should have the possibility of being treated at community level. Mental health care should not only be local and accessible, but should also be able to address the multiple needs of individuals. It should ultimately aim at empowerment and use efficient treatment techniques which enable people with mental disorders to enhance their self-help skills, incorporating the informal family social environment as well as formal support mechanisms. Community-based care (unlike hospital-based care) is able to identify resources and create healthy alliances that would otherwise remain hidden and inactivated.
Use of those hidden resources can prevent situations in which discharged patients are abandoned by health services to the care of their unequipped families (with the well-known negative psychosocial consequences and burden for both). It allows for quite effective management of the social and family burden, traditionally alleviated by institutional care. This kind of service is spreading in some European countries, in some states of the United States, in Australia, Canada and China. Some countries in Latin America, Africa, the Eastern Mediterranean, South-East Asia and the Western Pacific have introduced innovative services (WHO 1997b).
Good care, however and wherever it is applied, flows from basic guiding principles, some of which are particularly relevant to mental health care. These are: diagnosis; early intervention; rational use of treatment techniques; continuity of care; wide range of services; consumer involvement; partnership with families; involvement of the local community; and integration into primary health care.
Diagnosis and intervention
A correct objective diagnosis is fundamental for the planning of individual care, and for the choice of an appropriate treatment. Mental and behavioural disorders can be diagnosed with a high level of reliability. Since different treatments are indicated for different diseases, diagnosis is an important starting point of any intervention.
A diagnosis can be made in nosological terms (that is, according to an international classification and nomenclature of diseases and disorders), in terms of the type and level of disability experienced by an individual, or preferably in terms of both.
Early intervention is fundamental in preventing progress towards a full-blown disease, in controlling symptoms and improving outcomes. The earlier the institution of a proper course of treatment, the better the prognosis. The importance of early intervention is highlighted by the following examples.
- In schizophrenia, the duration of untreated psychosis is proving to be important. Delays in treatment are likely to result in poorer outcomes (McGorry 2000; Tharaet al. 1994).
- Screening and brief interventions for those at high risk of developing alcohol-related problems are effective in reducing alcohol consumption and related harm (Wilk et al. 1997).
The appropriate treatment of mental disorders implies the rational use of pharmacological, psychological and psychosocial interventions in a clinically meaningful, balanced, and well-integrated way. In view of the extreme importance of the ingredients of care, they are dealt with at length later in this chapter.
Continuity of care
Some mental and behavioural disorders follow a chronic course, albeit with periods of remission and relapses which may mimic acute disorders. Nevertheless, as far as management is concerned, they are similar to chronic physical illnesses. The chronic care paradigm is therefore more appropriate to them than the one generally used for acute, communicable disease. This has particular implications concerning access to services, staff availability, and costs to patients and families.
The needs of patients and their families are complex and changing, and continuity of care is important. This calls for changes in the way care is currently organized. Some of the measures to ensure continuity of care include:
- special clinics for groups of patients with the same diagnosis or problems;
- imparting caring skills to carers;
- the same treatment team providing care to patients and their families;
- group education of patients and their families;
- decentralization of services;
- integration of care into primary health care.
Wide range of services
The needs of people with mental illness and their families are multiple and varied and differ at different stages of illness. A wide variety of services are required to provide comprehensive care for some of the people with mental illness. Those recovering from illness need help to regain their skills and resume their roles in society. Those who recover only partially need assistance to compete in an open society. Some patients, especially in developing countries, who have had sub-optimum care can nevertheless benefit from rehabilitation programmes. These services may dispense medication or provide special rehabilitation programmes, housing, judicial assistance or other forms of socioeconomic support.Specialized personnel, such as nurses, clinical psychologists, social workers, occupational therapists and volunteers, have demonstrated their value as intrinsic elements of flexible care teams. Multidisciplinary teams are especially relevant in the management of mental disorders, owing to the complex needs of patients and their families at different points during the illness.
Partnerships with patients and families
The emergence of consumer movements in a number of countries has changed the way stakeholders' views are seen. These consumer groups are generally composed of people with mental disorders and their families. In many countries, consumer movements have grown in parallel with traditional mental health advocacy, such as that of family movements. The consumer movement is based on a belief in individual patient choice regarding treatment and other decisions (see Box 3.4).
Box 3.4 The role of consumers in mental health care
People using mental health services have traditionally been viewed within the system as passive recipients, unable to articulate their own needs and wishes, and subjected to forms of care or treatment decided on and designed by others. However, over the past 30 years, as consumers they have begun to articulate their own visions of what services they need and want.
Among the strongest themes that have emerged are: the right to self-determination; the need for information about medication and other treatment; the need for services to facilitate active community participation; an end to stigma and discrimination; improved laws and public attitudes, removing barriers to community integration; the need for alternative, consumer-run services; better legal rights and legal protection of existing rights; and an end to keeping people in large institutions, often for life.
Opinions vary among consumers and their organizations about how best to achieve their goals. Some groups want active cooperation and collaboration with mental health professionals, while others want complete separation from them. There are also major differences as to how closely to cooperate, if at all, with organizations representing family members of patients.
It is clear that consumer organizations around the world want their voices to be heard and considered as decisions are made about their lives. People diagnosed with mental illness are entitled to be heard in the discussions on mental health policy and practice that involve professionals, family members, legislators, and opinion leaders. Behind the labels and diagnoses are real people, who, no matter what others may think, have ideas, thoughts, opinions, and ambitions. Those who have been diagnosed with mental illness are no different from other people, and want the same basic things out of life: adequate incomes; decent places to live; educational opportunities; job training leading to real, meaningful jobs; participation in the lives of their communities; friends and social relationships; and loving personal relationships.
Contributed by Judi Chamberlin (MadPride@aol.com), National Empowerment Center, Lawrence, MA, USA (http://www.power2u.org).
Probably the best example of a consumer movement is Alcoholics Anonymous, which has become popular around the world and has achieved recovery rates comparable to those obtained by formal psychiatric care. The availability of computer-assisted treatment and online support from ex-patients have opened up new ways of getting care. Patients with mental disorders can be very successful in helping themselves, and peer support has been important in a number of conditions for recovery and reintegration into society.
The consumer movement has substantially influenced mental health policy in a number of countries. In particular, it has increased the employment of people with disorders in the traditional mental health system as well as in other social service agencies. For example, in the Ministry of Health of the Province of British Columbia, Canada, the position of Director of Alternative Care was recently assigned to a person with a mental disorder, who is thus in a strong position to influence mental health policy and services.
Consumer advocacy has targeted involuntary treatment, self-managed care, the role of consumers in research, service delivery and access to care. Programmes run by the consumers include drop-in centres, case management programmes, outreach programmes and crisis services.
The positive role of families in mental health care programmes has been recognized relatively recently. The earlier view of the family as a causative factor is not valid. The role of families now extends beyond day-to-day care to organized advocacy on behalf of the mentally ill. Such advocacy has been pivotal in changing mental health legislation in some countries, and improving services and developing support networks in others.
Substantial evidence demonstrates the benefits of involving families in the treatment and management of schizophrenia, mental retardation, depression, alcohol dependence and childhood behaviour disorders. The role of the family in the treatment of other conditions remains to be more firmly established by further controlled trials. There are indications that the outcome for patients living with their families is better than for those in institutions. However, many international studies have established a strong relationship between high "expressed emotion" attitudes in relatives and an increased relapse rate for patients living with them. By changing the emotional atmosphere in the home, the relapse rate can be reduced (Leff & Gamble 1995; Dixon et al. 2000).
Work with families to reduce relapses was always seen as an adjunct to maintenance medication and not as a substitute for it. Indeed, family therapy, when added to antipsychotic medication, has been shown to be more efficacious than medication alone in preventing relapse in schizophrenia. A meta-analysis by the Cochrane Collaboration (Pharaoh et al. 2000) showed relapse rates being reduced on average by half over both one year and two years. The question remains, however, whether ordinary clinical teams can reproduce the striking results of the pioneering research groups which have conducted their work mostly in developed countries. In developing countries, the family is usually involved in the treatment of the individual psychiatric patient, both by traditional healers and biomedical services.
Family networking locally and nationally has brought carers into partnership with professionals (Box 3.5). In addition to providing mutual support, many networks have become advocates, educating the general public, increasing support by policy-makers, and fighting stigma and discrimination.
Box 3.5 Partnerships with families
Mental health care workers, the families of individuals with mental illness, and family support organizations have a great deal to learn from each other. Through regular contact, health staff are able to learn from families what knowledge, attitudes and skills are needed to enable them to work together effectively. They also learn about problems such as limited resources, huge caseloads, and inadequate training, which prevent clinicians and clinical services from delivering effective services. In such cases, advocacy by a family organization may be seen to have a greater value than the "vested interest" of the professional worker.
When mental illness occurs, professional workers benefit from developing an early partnership with the family. Through such a joint engagement, information on a wide range of issues related to the illness can be discussed, family reactions explored, and a treatment plan formulated. Families, in turn, benefit from learning a process of problem-solving in order to manage the illness most effectively.
Two family support associations which have been very successful in meeting the needs of their respective constituencies, and in connecting with professionals, are briefly described below.
Alzheimer's Disease International (ADI) is an umbrella organization of 57 national Alzheimer's associations worldwide. Its purpose is to support the development and increased effectiveness of new and existing national Alzheimer's associations through such activities as World Alzheimer's Day, an annual conference, and the Alzheimer's University (a series of workshops addressing basic organizational issues). It also provides information through its web site (http://www.alz.co.uk), fact sheets, booklets and newsletters.
National Alzheimer's associations are dedicated to supporting people with dementia and their families. They provide information as well as practical and emotional help such as help lines, support groups and respite care. They also provide training for carers and professionals and advocacy to governments.
The World Fellowship for Schizophrenia and Allied Disorders (WSF) stresses that the mutual sharing of knowledge the professional knowledge of mental health workers, and the knowledge gained by families and consumers through their lived experiences is vital for the development of trust. Without trust, an effective therapeutic alliance is often not possible and clinicians, families and consumers can find themselves at odds with each other.
This continuing partnership aims at developing assertiveness in family carers so that they are able to resolve the many complicated challenges with which they are confronted, rather than having to rely always on professional support. This process is known as "moving from passive minding to active caring". It is reinforced by referral to family support organizations, which professionals should strongly recommend to family members as an important part of the long-term treatment and care plan. More information about this association can be obtained by email from firstname.lastname@example.org.
Involvement of the local community
Societal beliefs, attitudes and responses decide many aspects of mental health care. People with mental illness are members of society, and the social environment is an important determinant of outcome. If the social environment is favourable, it contributes to recovery and reintegration; if negative, it can reinforce stigma and discrimination. Efforts to enhance the involvement of local communities include disseminating accurate information about mental disorders and using community resources for specific initiatives, such as volunteers in suicide prevention and collaboration with traditional healers. Shifting care from institutions to the community itself can alter community attitudes and responses, and help people with mental illness lead a better life.
Studies in many African and Asian countries show that about 40% of the clients of traditional healers suffer from mental illnesses (Saeed et al. 2000). This is not much different from the picture revealed by many studies conducted in general health care settings. Working with traditional healers is thus an important mental health initiative. Professionals give healers accurate information about mental and behavioural disorders, encourage them to function as referral agents, and discourage practices such as starvation and punishment. For their part, professionals come to understand the healers' skills in dealing with psychosocial disorders.
Nongovernmental organizations have been important in mental health movements throughout history. It was a consumer, Clifford Beers, who in 1906 created the first successful nongovernmental organization dealing with mental health, the forerunner of the World Federation for Mental Health. The contributions of these organizations are unquestionable.
There are a number of avenues for bringing about changes in the community. The most important of these is the use of mass media for educational campaigns directed to the general public. "Defeat depression", "Changing minds every family in the land", and the World Health Day 2001 slogan "Stop exclusion Dare to care" are examples. Massive public awareness programmes in countries such as Australia, Canada, India, the Islamic Republic of Iran, Malaysia, the United Kingdom and the United States have changed the attitudes of the population to mental disorders. The World Psychiatric Association (WPA) has launched a programme in a number of countries to fight stigma and discrimination against persons suffering from schizophrenia (see Box 4.9). The programme uses the mass media, schools and family members as change agents.
Although in many developing countries the community does not necessarily discriminate against people with mental illness, beliefs in witchcraft, supernatural forces, fate, ill will of gods and so forth can interfere with seeking help and adherence to treatment. One of the best examples of how communities can become carers of the mentally ill is to be found in the Belgian town of Geel, the site of what is undoubtedly the oldest community mental health programme in the western world. Since the 13th century, and originating perhaps as early as the 8th century, severely mentally ill people have been welcomed by the Church of St Dympha or by foster families in the town, with whom they have lived, often for several decades. Today, such families in Geel care for some 550 patients, about half of whom have jobs in sheltered workshops.
Integration into primary health care
Another important principle which plays a crucial role in the organization of mental health care is integration into primary health care. The fundamental role of primary care for the entire health system in any country was clearly stated in the Alma-Ata Declaration. This basic level of care acts as a filter between the general population and specialized health care.
Mental disorders are common and most patients are only seen in primary care; but their disorders are often not detected (Üstün & Sartorius 1995). Also, psychological morbidity is a common feature of physical disease, and emotional distress is often seen (but not always recognized) by the primary health care professionals. Training primary care and general health care staff in the detection and treatment of common mental and behavioural disorders is an important public health measure. This training can be facilitated by liaison with local community-based mental health staff, who are almost always keen to share their expertise.
The quality and quantity of specialist mental health services needed depend upon the services that are provided at the primary health care level. In other words, the provision of services needs to be balanced between community care and hospital care.
Patients discharged from psychiatric wards (in either general or specialized hospitals) can be effectively followed up by primary health care doctors. It is clear that primary health care plays a major role in countries where community-based mental health services do not exist. In many developing countries, well-trained primary health care workers provide adequate treatment for the mentally ill. It is interesting to note that the poverty of a country does not necessarily mean that mentally ill people will receive poor care. Experiences in some African, Asian and Latin American countries show that adequate training of primary health care workers in the early recognition and management of mental disorders can reduce institutionalization and improve clients' mental health.
Chapter 3: Solving Mental health problems:
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