8
Community Involvement in Malaria Control and Prevention

Malaria prevention must go hand in hand with community participation. Unless individuals in communities see the merits of preventing the illness, even the best-designed prevention strategies might not be used. It is necessary to understand how a community perceives febrile illness, the importance placed on it in people’s belief systems regarding illness in general, and what existing behaviors are practiced that can either complement or hinder preventive measures.

The use of preventive measures will be affected by two things: how affected communities define their priorities regarding health and illness and the degree to which individuals think they can personally control or prevent illness. No matter how sound a preventive approach might be, if individuals do not see the merits of a particular approach or if competing needs are prioritized higher, the preventive approaches will fail to some degree. A key question is what personal protection measures are acceptable to the population at risk: What is their history in using preventive measures? Are there any cultural taboos or fears associated with preventive measures? For example, if pregnant women are concerned about using antimalarial drugs during pregnancy, it would be necessary to offer comprehensive health education about malaria risks during pregnancy prior to implementing protective intermittent treatment programs. If malaria (or febrile illness in general) is perceived as an illness for which personal actions cannot modify the acquisition or course of the illness, preventive behaviors would probably not be viewed as important.



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Malaria Control During Mass Population Movements and Natural Disasters 8 Community Involvement in Malaria Control and Prevention Malaria prevention must go hand in hand with community participation. Unless individuals in communities see the merits of preventing the illness, even the best-designed prevention strategies might not be used. It is necessary to understand how a community perceives febrile illness, the importance placed on it in people’s belief systems regarding illness in general, and what existing behaviors are practiced that can either complement or hinder preventive measures. The use of preventive measures will be affected by two things: how affected communities define their priorities regarding health and illness and the degree to which individuals think they can personally control or prevent illness. No matter how sound a preventive approach might be, if individuals do not see the merits of a particular approach or if competing needs are prioritized higher, the preventive approaches will fail to some degree. A key question is what personal protection measures are acceptable to the population at risk: What is their history in using preventive measures? Are there any cultural taboos or fears associated with preventive measures? For example, if pregnant women are concerned about using antimalarial drugs during pregnancy, it would be necessary to offer comprehensive health education about malaria risks during pregnancy prior to implementing protective intermittent treatment programs. If malaria (or febrile illness in general) is perceived as an illness for which personal actions cannot modify the acquisition or course of the illness, preventive behaviors would probably not be viewed as important.

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Malaria Control During Mass Population Movements and Natural Disasters In many situations involving displaced populations, resource limitations may restrict the types of preventive services that can be offered or to which subpopulations such services could be offered. Ideally, scarce resources should be applied first to those groups at greatest risk. However, this leads to the question of what constitutes vulnerability and whose definition is used when making programmatic decisions about resources. Nongovernmental organizations (NGOs) and communities might not agree on who is most vulnerable. For example, a health-related NGO might label children under 5 years of age and pregnant women as the most vulnerable, whereas communities might identify displaced individuals working in jobs with humanitarian agencies as the most vulnerable. Time lost from work because of malaria would be seen as a threat to these scarce jobs, which are often seen as “prime positions” in terms of receiving additional rations or other advantages. DEFINITION OF VULNERABILITY It becomes necessary early in an emergency to determine how a community defines “vulnerability”—that is, who within a population is most in need of preventive measures. Studies of famine and food distribution in complex emergencies show that vulnerability is a poorly understood concept (Jaspers and Shoham, 1999; Webb and Harinarayan, 1999). In addition to physiological parameters of vulnerability (such as age and parity for malaria), vulnerability is partly determined by social, political, and economic factors. The dynamics of vulnerability that mitigate a crisis and lessen the impact for some people but not others are not well understood. In planning malaria prevention programs, nontraditional segments of the potential population at risk in a complex emergency should also be considered as vulnerable. For example, are there any marginalized subgroups for whom participation in preventive programs (such as an insecticide-treated net reimpregnation program) might not be feasible due to security concerns? Other socially vulnerable groups might include self-settled rural refugees or internally displaced persons, elderly persons, disabled persons, or even female-headed households. The implications for their access to both malaria prevention and management have not been given adequate attention in complex emergencies. Also, there is limited information on socioeconomic factors that influence the prevalence of malaria. What is known is based on nonemergency situations in Africa (Guiguemde et al., 1994; Koram et al., 1995a, 1995b).

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Malaria Control During Mass Population Movements and Natural Disasters BEHAVIORS AND RISK Consideration should also be given to behaviors that might place a displaced population at risk for malaria. Does labor migration occur? If so, where? What are the hours of potential exposure? As mentioned in Chapter 1, one risk factor for displaced populations is no or poor housing. Particularly in the early stages of a complex emergency, people might be housed in tents or under plastic sheeting tarpaulins, both of which are incompatible with the proper hanging of standard insecticide-treated bed nets or with residual spraying. Another risk factor, depending on the biting preferences of the vector, might be the presence of livestock. In determining the merits of using preventive measures, such as insecticide-treated materials, questions should be raised about the social market value of such measures. If packages of rations do not contain items that are accepted and valued, those rations might well be sold or traded for other things perceived as being more valuable. For example, mosquito nets might be traded for blankets or items of food that are more highly desired by refugees. In planning prevention programs it is also important to determine who makes financial decisions for households, to identify to whom the rations are distributed, and to clarify who is considered most vulnerable and in need of preventive measures. It is not a certainty that children under age 5 or pregnant women will be allowed to sleep under a mosquito net, particularly if there is only one net in the household. Designing preventive approaches for displaced populations takes creative thought, given the constraints of situations where people have little control over where they live or the types of shelter available to them. HUMAN BEHAVIOR AND MALARIA CONTROL: SOCIOCULTURAL CONSIDERATIONS An important element to any aspect of malaria control is human behavior—an understanding of what people perceive as the cause of malaria, the extent to which they believe they can prevent and/or treat malaria, and their acceptance and usage of malaria control interventions. These are determining factors in the success or failure of a malaria control program. Influences from the larger context (political, social, cultural, environmental, and economic) in which people live their daily lives affect personal choices and may influence whether a control program is sustainable. For example, access to health care and the ability to buy antimalarial

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Malaria Control During Mass Population Movements and Natural Disasters drugs may be predicated on several things, such as personal knowledge about malaria, extent of poverty, seasonal variations in income, or even whether or not a functional road or transportation system exists. In complex emergencies, contextual factors often become more complicated—for example, expectations of what constitutes “appropriate” malaria treatment from the perspective of the displaced population may contrast with the type of treatment offered at the refugee camp. Too often, malaria control activities are designed with little understanding of the cultural context in which they are supposed to operate. Relief agency staff become frustrated and angry that a seemingly good and logical proposal has failed to capture the interests of the at-risk populations for which it was designed. Additionally, decisions about whether to take action and which actions to take are often based on sociopolitical factors and not necessarily scientific data. These influences must be considered as well when attempting to engage agencies and at-risk populations in malaria control activities. Perceptions of Febrile Illness Understanding how febrile illness in general is perceived is the first step in understanding how individuals conceive of malaria as a disease entity. What is defined and understood as “malaria” from a biomedical perspective may or may not match the local understanding of the illness. Perceived etiology of fever (specifically, “malaria fever”) will determine, in part, treatment-seeking behavior (Williams et al., 1999). Ethnographic work from the coastal areas of Tanzania is a good example of the impact of people’s perceptions of illness (Winch et al., 1996; Winch, 1999). In this setting, routine or mild fever is grouped five ways: “malaria fever” (homa ya malaria, in KiSwahili), fever due to personal problems, periodic fevers, ordinary fever, and fever from boils. Including “malaria fever” in this group indicates that it is not perceived as a serious illness, which could have implications for how rapidly people seek treatment as well as the source of treatment. Homa ya malaria is associated with the use of formal health care services. Illnesses that have symptoms associated with severe malaria are grouped with severe fevers or illnesses associated with sorcery or witchcraft, which are best treated by traditional practitioners. There is also a separate classification of a childhood illness (degedege) whose symptoms were compatible with severe malaria (including cerebral malaria) but were not linked with homa ya malaria. Perceived to be a spiritual

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Malaria Control During Mass Population Movements and Natural Disasters illness, it is thought to be unrelated to malaria in children; thus, the importance of malaria as a potentially fatal disease in children was underestimated in the local population. Local interpretations of febrile illnesses are necessary in order to interpret how, why, when, and from whom people seek medical treatment. It is also important to understand how similar the displaced population is from the host population, particularly if both groups are receiving care from the same facilities. Treatment-Seeking Behaviors In addition to the perceived etiology of an illness, there are other factors that will determine treatment-seeking behaviors for malaria. Issues important to understanding treatment seeking include the type(s) of treatment chosen and the timing and sequencing of the treatment. People often choose multiple sources of treatment, both traditional and Western. Antimalarials and other drugs used to treat malaria illness (e.g., antipyretics, antibiotics) are often obtained outside formal health care services (Foster, 1995; McCombie, 1996). Although treatment-seeking studies generally discuss delays in seeking treatment in terms of the time lapse between onset of symptoms and a person seeking treatment at a health care facility, self-treatment for malaria occurs frequently and this may be the first type of treatment sought (McCombie, 1996). There is almost no documented information about the malaria treatment-seeking practices of displaced populations. If refugees are residing in a camp setting, the distance from the residential units to the health care facilities might be a limiting factor, particularly during nighttime hours. Security issues (e.g., the ability to move freely around the area of refuge without being hassled, fear of rape, accessibility of the settlement area to outsiders) and the availability of communication and transportation between residential areas and health care facilities may delay treatment seeking from established health care facilities. Conversely, if refugees are situated in “open” camps/settlements (camps that permit movement of the displaced population out of the identified area of refuge) or if refugees are self-settled, people may choose to use the health care services provided to the host population. As emergencies stabilize and periods of displacement become longer in duration, communities attempt to re-create their formal patterns of social organization and informal social structures begin to resemble the preflight period, given the constraints of refuge. In some communities, nonofficial

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Malaria Control During Mass Population Movements and Natural Disasters sources of health care, such as traditional healers (herbalists, spiritual healers, bush doctors, etc.), may have been the preferred source of illness treatment during the predisplacement periods. Once “settled” in the area of refuge, members of the community may seek out these healers to treat malaria-like illnesses. Some NGOs have been sensitive to the role that alternative healers have traditionally played in some communities and have incorporated traditional patterns of healing into the services offered by health care facilities. In the Thai/Cambodian camps in the 1980s, traditional healers known as the Kru Khmer came to the pediatric inpatient facility on a regular basis to make clinical rounds with the health care staff. The Kru Khmer lent support to clinical decisions made by the staff, and families and community leaders were encouraged by the positive recognition of an important element of their culture. Treatment decisions might also be affected by the choice of drugs used for first-line therapy. In refugee camps in western Tanzania in 1998, Burundian refugees were dismayed by the use of chloroquine as the official first-line therapy, as they had previously used sulfadoxine/pyrimethamine, with better clinical results than when they were treated with chloroquine. Treatment decisions of the host community may also be influenced by case management policies for the displaced population. If members of the host community determine that the displaced community is receiving better care or a more effective drug for malaria, the host community might also try to receive health care services from the humanitarian relief agencies. This could have serious personnel and financial implications for the relief agencies. And perceptions about preferential treatment for the displaced population can lead to feelings of resentment and/or hostility by the host population. Depending on how quickly markets can be established in the area of refuge (if allowed at all) and the financial resources of those displaced, self-medication with purchased drugs may be common. The availability of antimalarial drugs at health care facilities might also play a role in where people obtain care. If nongovernmental facilities regularly run out of antimalarial drugs, local markets might play a bigger role in treatment of the disease. Interactions with the staff of a health care facility may affect treatment choices. In nonemergency contexts, parents of ill children in Africa were reluctant to discuss self-treatment, particularly when employing a traditional healer, for fear of disapproval from health care workers (Williams et al., 1999). A lack of respect toward patients in general from health care

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Malaria Control During Mass Population Movements and Natural Disasters workers in Africa has also been noted (van der Geest, 1997). If health care workers are primarily international staff or even national staff from a different cultural background than the affected population, this might diminish the use of health care facilities. How the displaced population perceives the health care workers available to them in a complex emergency is unknown. Gratitude for care received may be an overriding factor, but without documentation of the dynamics between humanitarian relief workers and displaced persons, one can only speculate. Need for Information on the Sociocultural Aspects of Complex Emergencies Historically, those involved with health care issues in complex emergencies have given little attention to the sociocultural dimensions or to the wider global context within which complex emergencies develop. Given the complexities of providing essential health care services to displaced populations, particularly in the beginning stages of an emergency, this is understandable. The skills required to gather the types of sociocultural information that could assist in programmatic and policy planning and implementation are not generally found in humanitarian relief agencies. However, this may be a shortsighted view as valuable resources (both financial and human) can be wasted in planning programs to modify behaviors that are not clearly understood or that are based on false assumptions of why people behave in a certain manner. One approach to address this gap would be for humanitarian organizations to work closely with social scientists, such as medical anthropologists, whose applied training reflects the perspectives of both biomedicine and social science (Williams and Bloland, 2001). There may be social scientists in the displaced population who could work jointly with the humanitarian relief agencies to define the most critical sociocultural questions and identify the most appropriate way to gather and analyze such data. Acknowledging the situational constraints of complex emergencies (i.e., the need for urgent decision making, the volume of work required to maintain day-to-day operations, limited budgets, and the fluid nature of an emergency), rapid assessments may be the most practical means of gathering data to inform programs, particularly in the early stages of an emergency. Rapid assessments (also called rapid ethnographic assessments, participatory rural appraisals, rapid community assessments, or rapid assessment procedures) refer to individual and group-based ethnographic methods to gather

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Malaria Control During Mass Population Movements and Natural Disasters cultural, social, economic, and behavioral data in a rapid fashion (Chambers, 1992; Beebe, 1995; Cornwall and Jewkes, 1995; David et al., 1998; Nichter, 1999). A key component of rapid appraisals is the inclusion of the affected population in all stages of the work, from data collection through analysis. The data obtained reflect the viewpoint of the displaced community, as opposed to the perspective of humanitarian workers or agencies.1 Also, rapid appraisals often combine qualitative and quantitative approaches, which is particularly useful in addressing epidemiological problems. The following are some examples of questions that could guide the gathering of baseline data for programmatic planning of malaria control: Baseline demographics Ethnic and geographical background of displaced population, including subgroups. Types of family or household structures: identification of head of household, numbers and types of groups perceived to be vulnerable. Religious or cultural practices. Community leaders, both formal and informal. Degree of social organization currently existing in the displaced population. How different is it from the predisplacement social organization? Perception of illness and treatment-seeking practices How is febrile illness understood, particularly in relation to the biomedical conceptualization of malaria? What local terms are used to describe febrile illness and malaria? How does the community define vulnerability in terms of malaria? What influences people to seek treatment? Where, when, how, and by whom is treatment sought? Are there differences by age groups? What is the degree of self-treatment? What does it consist of? Are there any political, economic, or structural constraints to seeking care? 1   The Center for Refugee and Disaster Studies at the Johns Hopkins University School of Public Health has developed a guide specifically geared toward understanding the perceived needs of refugees and internally displaced persons and is a good reference for fieldwork (Weiss and Bolton, 2000). Available at: <http://www.jhsph.edu/refugee/images/tqr_a_docs/tg_introduction.pdf>.

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Malaria Control During Mass Population Movements and Natural Disasters How does the malaria treatment offered to the displaced population differ from their home experience? What are the perceptions of safety and effectiveness of the antimalarial drugs? Prevention What prevention measures are acceptable to the affected population? What prevention measures are unacceptable and why? What is the social market value of insecticide-treated materials or antimalarial drugs? What behaviors, such as labor migration, increase the risk of acquiring malaria? Implementing malaria control What is the community’s previous experience with malaria control programs? What are the priorities for malaria control, as defined by the affected community? How do those priorities differ from those of the relief agencies? What possible constraints are there to implementing malaria control (population- or agency-based, financial, political)? What would be attractive incentives to encourage and support the displaced population to engage in malaria control activities? RECOMMENDATIONS Identify the most vulnerable populations: pregnant women, children under age 5, and sociopolitical groups that might not be able to access care. Identify key members of the affected community to work with representatives from relief agencies. Examine sociopolitical influences that might affect the acceptability and use of malaria control strategies. Collaborate with applied social scientists to better understand the factors that influence treatment-seeking behaviors by the affected populations.

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Malaria Control During Mass Population Movements and Natural Disasters Role of Community Participation in Malaria Prevention and Control: Key Points Community participation (reflecting both understanding and acceptability of interventions) should be an essential element in both malaria prevention and control. The sociocultural context surrounding displacement situations needs to be considered when designing malaria control interventions. Treatment-seeking behaviors are complex and poorly understood in the context of complex emergencies.