9 Stephanie Homer Clinical Tutor of Rural Fieldwork, Department of Occupational Therapy, University of the Witwatersrand, Johannesburg, South Africa This chapter is based on the philosophy and practice developed by the Community Rehabilitation Research and Education Programme (CORRE) of the University of the Witwatersrand, together with the rehabilitation staff and people of Limpopo province, South Africa. Throughout the chapter, the occupational therapist may be seen as having the role of service developer and clinician, or service developer and educator and manager of the mid-level health workers and people carrying out the day-to-day intervention, or as the consultant on disability rights and rehabilitation for community organisations who wish to address the needs of people with disability (PWD). The role the occupational therapist takes on in practice will depend on the resources and manpower available within the health service and community in which he/she works. This chapter has been written as if an occupational therapist is just beginning to develop a community service; however, it is important that all service providers should do a regular ‘health check’ on the services they provide to ensure that they are upholding the basic principles of community-based rehabilitation (CBR) as dictated by the governing body of that country. There are simply more people with mental illness or disability in the community than there are in institutions. On limited data, it appears that the average length of stay in a mental hospital in South Africa is approximately 32 days, with 40% of users spending less than a year in hospital. Therefore, most people with mental illness are treated at outpatient departments (World Health Organisation & Ministry of Health South Africa 2007), and most people walk to the service site (Seedat et al. 2009). The South African Stress and Health study of 4000 people showed that 15.3% had had treatment for either an anxiety disorder, mood disorder and substance use (Seedat et al. 2009). Of those with a mental health disorder in 2008, only 25.2% had sought treatment, indicating a large number of people who need help are not accessing services (Seedat et al. 2009). In addition, there is a great need to prevent mental illness, and this may be best dealt with by working in the community. The HIV/AIDS pandemic has resulted in higher mortality rate in young adults, maternal death rising from 230 (1990) to 410 (2008) per 100 000 (WHO Statistics 2011, p. 70), so children are growing up without mothers, leaving many AIDS orphans to be looked after by aging grandparents. It is to be expected that grandparents are under considerable economic, physical and mental stress as a result (Joubert & Bradshaw 2006). This is both as a result of losing their support in old age (their child) and gaining a grandchild to support. The HIV rate in Africa varies from 0.1% in Algeria to 25.8% in Swaziland, with 17.8% of adults in South Africa aged 15–49 years living with HIV (WHO Statistics 2011, p. 32). The ILO, UNESCO and World Health Organisation (WHO) describe CBR as ‘A strategy within general community development for the rehabilitation, reduction of poverty, equalisation of opportunities, and social inclusion of all people with disabilities through the combined efforts of people with disabilities themselves, their families, organisations and communities and relevant government and non-government health, education, vocational, social and other services’ (International Labour Organisation, United Nations Educational, Scientific and Cultural Organisation, & World Health Organisation 2004). Within the profession of occupational therapy, CBR was defined as ‘to create culturally appropriate prevention and intervention services that reach the largest number of people in the most cost effective way’ (Lysack & Kaufert 1994). However, CBR is now seen as more than just a therapeutic intervention but also a means of changing the place of PWD in society. Whilst CBR has been advocated over the past 30 years or more, the WHO is well aware that people with mental health problems are often excluded from receiving services or social inclusion. For this reason, they created a supplementary booklet on CBR and mental health. The goals of CBR in mental health are (World Health Organisation 2010 CBR & MH): In order to understand the ethos of CBR, the occupational therapist should consider that the person with mental health problems is not the only focus of attention; the family is also a client, as is the local community. Therefore, in community settings, the occupational therapist should address the following goals and principles by asking questions: Whilst the first steps in developing CBR may be to have the needs of those with mental disability recognised and some basic services offered at the community level, the ultimate aim is to ensure that families and communities recognise the rights of those with disability and accept the concept of equality (Mendis 1994). Therefore, the CBR service programmes should include: The success of the CBR service in any country is dependent on the appropriate assessment of needs and a needs or situational analysis (Department of Health 1997a, 2000; World Health Organisation 2010, p. 45). Funding is usually based on information on the prevalence of health problems and the problem distribution throughout the district, that is, the medical needs. A more detailed analysis of local health needs would include an understanding of the effects of the mental health problems on the consumer, their family and community and the subsequent needs. In addition, the health service provider and the health professionals will have needs. Research results from other areas can be applied to different communities as long as there is a ‘near match’ to the sample population and their existing health structures. Whenever needs are identified, people start to have expectations for the future. The priority need of a person with mental disability may be the love and understanding of their family, and they may expect the occupational therapist to align with him/her against the family. The family’s priority need may be for the person who is mentally disabled to contribute to the productivity of the family by looking after the home, so that others can go to work, or by earning money. Their expectation of the occupational therapist may be to ensure that the client works. The community leaders may be more concerned with protecting the community and need to confine the people with mental disabilities so that they do not endanger property and health of others. The occupational therapist may need the client, family and community to understand the causes of mental disability and treatment and expect that this knowledge will increase compliance with treatment and acceptance by the community. Establishing the numbers of people requiring a service is essential for appropriate services to be planned. Research indicates that the majority (97%) of people living in a rural community know someone with mental illness (Masilela & MacLeod 1998). Participatory Rapid Appraisal (PRA) mapping is an appropriate tool to help community members identify people with mental illness, especially those who are not using the mental health services. Mapping is a rapid, practical activity that most people enjoy and should be done with a variety of community groups in order to get a comprehensive map of those people who may need services. A youth group may know of young people with problems with alcohol- or school-related stress, whereas mothers attending the antenatal clinics would be more likely to recognise post-partum disorders and young children with learning problems. In urban areas, it may be more appropriate for the occupational therapist to do mapping with a street or ward committee, teachers, a local church group or clinic nurses. If the occupational therapist already has access to a group of people who are disabled, for example, a self-help group or people attending a day-care centre, mapping may still be used to find others who do not use rehabilitation services. Mapping can also be used to identify existing service delivery points throughout the district such as government health services, disabled people’s organisations (DPOs) and informal health services. The map of the existing services can then be compared to the areas of greatest need. Mapping uses community knowledge and is a way to initiate relationships with community members. Involving community leaders such as a ward committee or local tribal office can be the first step in making the community aware of the needs of people with mental disability and creating political involvement in the future CBR service. The important thing to remember with mapping is that involved professionals go to the community as the community does not come to them. This is the way to start to understand the context of the community in which intervention needs to take place. Ways to find people with mental disabilities are: Follow up with either a home visit or by advertising a meeting. This initial contact should be used to ensure that possible consumers and their families are aware of their rights and have information about the CBR services as well as to begin the process of identifying specific consumer and family needs. Such an approach increases people’s access to CBR services (Figure 9.1). (WHO CBR Matrix). Figure 9.1 A map showing how to find clients in a rural area. This was part of a larger map drawn by PWD. The people were invited to meet the therapists and attend the mapping meeting by advertising through the local church and radio. The World Health Organisation CBR Matrix is a useful tool to assist organisations to be holistic Information on prevalence and impact of disability is required to plan appropriate CBR services especially when the service needs additional health resources or the redistribution of these resources at district level. Prevalence figures do not necessarily reflect the occupational therapist’s caseload. The reason for the difference between prevalence and actual caseload is that those most likely to need mental health services are the people with learning disabilities or severe forms of mental illness. Their disabilities are extremely debilitating and result in them having few inner resources to cope with living without support in the community. Once on the occupational therapist’s caseload, they may need services over several months or years. Some mental health problems such as depression, alcoholism and neurocognitive disorders may not be perceived as illnesses. Stress and depression may be masked by physical symptoms and not recognised by the general practitioner or clinic nurse as needing mental health services. Therefore, although prevalent, they may not be referred for occupational therapy. The Disability-Adjusted Life Years (DALY) Scale by Murray and Lopez (1994) may be used to show that people with chronic disability require a greater percentage of health resources, whereas typically mental health problems rank fairly low when resources are allocated according to prevalence. Using the DALY system for neuropsychiatric disorder that ranks third in the South African National Burden of Disease (Seedat et al. 2009, p. 346) is recommended. Mental health problems impact on all areas of the person’s life and the life of his/her family. Difficulties may be noted in completing roles at home, work and school or with friends and the community. People with severe mental disability often cannot hold down a job or complete regular tasks within the home; their behaviour may be erratic and socially inappropriate resulting in them being ostracised by the community or their own family. Therefore, the needs of the consumer, family and community are to be considered during the needs analysis. Common needs can be identified through quantitative research, but qualitative research such as focus group discussion (Venn diagrams and matrix ranking) provides quick information. Occupational therapists should not assume they know the needs of the consumers. A simple Participatory Rural Appraisal (PRA) exercise like that reported by Petrick et al. (1999) showed that occupational therapists and consumers prioritised different needs, did not talk the same ‘language’ (leading to misunderstanding about priorities) and sometimes ignored the expressed needs of the consumers. Studies in rural areas of South Africa and India show that for caregivers the greatest burdens are financial, disruption of daily activities/routines and disruption in family relationships (Prafulla et al. 2010). In one rural South African area, the highest-ranking problems identified by the consumers at a psychiatric clinic and their caregivers were the financial burden of paying for traditional and Western health care including transport to service points (Prafulla et al. 2010). The majority of caregivers identify difficult behaviour as aggression, verbal abuse, lack of cooperation, roaming in the streets and not heeding the advice of the family. Caregivers and many clients in rural African communities did not know the cause of the illness (Masilela & MacLoed 1998). The economic and social burden on the family is fourfold: Sadly, only 10% of caregivers reported that they got help from health personnel (Masilela et al. 1996) and they were more likely to receive advice from community members (Masilela & MacLoed 1998). In India, families wanted help with work (either for themselves or family members of the person with mental health problems), changing attitudes within the community (including family and neighbours) to reduce stigma and skills training in occupational performance (Prafulla et al. 2010). As the majority of people with mental health problems are to be found in the community and not in hospital, it is important to understand life in that community and the issues around life events. An understanding of the community including the geography and climate, living conditions, economic level, culture and religion, health and social resources, education and work resources is needed (World Health Organisation 2010, pp. 40–41). In South Africa, much of this information is contained in each municipality’s five-year Integrated Development Plan (IDP). The onset of mental health problems often occurs early in life. Children may be born with a range of mental health problems from intellectual disability and conduct disorders to autism. Problems with alcohol, drugs, eating disorders, schizophrenia and bipolar disorders occur in adolescence or early adulthood. This means that for many people their entire adult life is affected. The things we take for granted as part of the stages of life – friendships, schooling, work, marriage and having your own house and family – become impossible dreams for many. Those who have a later onset of problems may face the stresses of losing friends, jobs, homes, marriage partner and children. All have to face the death of relatives, especially family members who supported them. Work with the broader community is not seen as a traditional role of the occupational therapist, but it is essential to promote mental health and integrate those with mental disability into the community in which they live. Mental disability is identified if the behaviour of the person is outside the acceptable social behaviour norms for that community; therefore, needs may reflect local culture and local knowledge of health. Communities have to deal with inappropriate behaviour at community gatherings, damage to property, aggression and assault (Masilela et al. 1996). Possible reasons for such extreme behaviour are that the early signs of illness are not recognised, poor treatment compliance or traditional interventions which are tried first. Traditional African beliefs link the signs and symptoms of mental disability with witchcraft (often associated with the belief that it is caused by someone jealous of you), or the wrath of the ancestors (because you have done something wrong or immoral), or with a professional calling. Hallucinations may be interpreted as the ancestors calling the person to become a traditional healer or that the person is possessed by a Holy Spirit and should become a church prophet. They may be sent for training in these skills. Ordinary people have very little knowledge of the Western medicine. The treatment of choice is usually a traditional healer (Freeman 1992; Community Agency for Social Enquiry (CASE) 1995) who is an expert in herbal medicine, interpreting the spirits of the ancestors or the will of the gods/God. Use of herbalists and spiritual healers and consultation with the dead are also included. Limited research has been done on the needs of the broader community. Masilela et al. (1996) and Modiba et al. (2000) have identified some important needs as: The research revealed that community leaders accepted that they had a role to play in meeting each of these needs. Ordinary people recognised that they could offer social or emotional support and financial support (often through donations of goods) to families affected by mental disability. Some community groups need more help than others, specifically communities that are predominantly indigenous and poor, have high prevalence of chronic medical disease or are exposed to high level of stress through violence or disasters (World Health Organisation 2001). Service providers need to develop and follow national policies for mental health, use technology appropriate for the primary care level and provide cost-effective services. To run an appropriate CBR service and access resources effectively, occupational therapists have to be aware of policy documents and use these to motivate for changes in local service delivery. However, 40% of countries do not have a mental health policy (World Health Organisation 2001). Lack of policy and standards result in inefficient health programmes. In South Africa, this is clearly illustrated in official policy documents. Mental illness and disability are identified as priority national health programmes, and the development of community mental health services is a specific goal (Department of Health 1997a), but policy documents on rehabilitation at clinic level (Department of Health 2000) do not mention services for people with mental health problems. There are the Mental Health Care Act of 2002 (Republic of South Africa 2002) and a list of essential drugs (World Health Organisation & Ministry of Health South Africa 2007, p. 8), but lack of policy guidelines has resulted in inequitable mental health services, with previously disadvantaged areas remaining the ‘poorest of the poor’ in terms of mental health services (World Health Organisation & Ministry of Health South Africa 2007, p. 26). Small wonder then that CBR services are difficult to establish in many countries. Even when policies are in place, a situational analysis is essential for planning and budgeting services (World Health Organisation 2001). This should cover the needs analysis, as well as an analysis of the resources and funding available, other health providers in the area, where services are offered (coverage) and what services are used or rejected by the consumers (World Health Organisation 2001). Although recognised as important, the data collection and research into mental illness in South Africa is extremely poor with only one province providing an annual report on mental health, and only 2% of published health research is on mental health (World Health Organisation & Ministry of Health South Africa 2007, p. 6). Many countries cannot afford specialist mental health programmes at primary health care (PHC) level, so the philosophy of CBR is to look at the common needs of all PWD and develop programmes to help the whole community. Occupational therapists therefore have mixed caseloads, and as a result, services for those with mental disabilities are unlikely to be prioritised. Understanding how the local community functions can be vital for the success of CBR even at the individual and family level. All communities are rich in resources that may help and support the client, their family and the occupational therapist. It is important to build up a network of contacts directly and indirectly related to health. Also, there are a variety of power structures which drive community projects, provide access to funds, bestow recognition or support for health projects or on an individual health worker. It is important to identify these structures and to work with them. A good analysis of needs and situation will provide the occupational therapist with a greater awareness of local and national politics and consumer needs. It will make the community and consumers aware of the CBR service and will provide the occupational therapist with a number of useful contacts in the community. Throughout the process, consumers, community members and health service staff will develop expectations about the future CBR service. Great care should be taken to ensure that everybody understands that the needs will be prioritised, that not all of the expressed needs will be met in the short term and that solutions should be realistic in terms of technology, personnel and funds. Once the analysis is complete, it should become part of the community profile document maintained within the department, and the service providers, consumers and community should be informed of the results. This formal community profile is a useful document for the District Information System. An appropriate CBR service would include the following: Programmes should follow national policy and incorporate the principles of equity, appropriate technology, community participation and multi-sectorial interaction (World Health Organisation 1978). As each district has different CBR service needs, the services in one district will differ from those in a neighbouring district and the service in one country may differ from its neighbours’. It is essential for each district to identify priority unmet needs – the gap between what is available and what is needed – and plan how to meet these needs. Occupational therapists and other health workers need to identify what would be a sustainable services considering basic services versus ‘nice to have’ services. There were only 0.13 occupational therapists per 100 000 population working in mental health either in government or non-governmental organisations (NGOs) facilities in South Africa in 2007 (World Health Organisation & Ministry of Health South Africa 2007, p. 6). Fitting mental health services into general rehabilitation service generally means that mental health services are of low priority. Knowledge of policy as well as local statistics therefore is essential when arguing for a mental health programme. Planning a programme should include all stakeholders. It is better to have a successful small programme than a grand idea that raises expectations within the community but fails to deliver all it sets out to do. All service programmes should be monitored and evaluated (World Health Organisation 2001).
Improving Health and Access to Health Services through Community-Based Rehabilitation
Introduction
Why work in the community?
Community-based rehabilitation (CBR)
What is CBR?
What are the local mental health needs?
How many people require a mental health service and how do you find people with mental disabilities in the community?
The principle is inclusion
How many people and what types of disabilities will you find?
What are the most common problems experienced by people with mental illness living in the community, and what are the communities most common problems about living with people with mental illness?
What are the consumer needs?
Community life
What are the needs of the community?
Service provider needs
Appropriate service programmes to address needs
Mobilising the community to participate in the CBR service
Related posts:
Forensic Psychiatry and Occupational Therapy
HIV/AIDS in Psychiatry and Issues Facing Occupational Therapists Regarding Practice
Acute Psychiatry and the Dynamic Short-Term Intervention of the Occupational Therapist
Interdisciplinary Group Therapy with Children
The Treatment of Eating Disorders in Occupational Therapy
Sensory Integration in Mental Health
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