Health-seeking behavior regarding schistosomiasis treatment using PZQ MDA has been widely researched across the globe [10, 39]. However, in the absence of a well-functioning MDA program, it is important to properly understand where people seek treatment and the factors that influence their health seeking. We conducted a community-based qualitative study guided by Kroeger’s model of health-seeking behavior to explore the health-seeking behaviors of the endemic communities of Kagadi and Ntoroko Districts in Western Uganda, at a time when the routine MDA program had been skipped. This section presents a discussion of the study findings
First, regarding past experience with MDA frequency, timeliness and coverage, our current study found that although PZQ was supposed to be given regularly, the program was irregular, with delayed delivery and a short supply of drugs. This is most likely due to the government’s lack of funding to support the implementation. It should be noted that schistosomiasis prevention and control initiatives rely on funding from development partners. This could compromise the progress made toward interrupting the infections. Other studies had also observed that failure to take the drug at an appropriate time hinders progress made in the fight against the disease, especially toward the interruption of infections [16].
Regarding the community’s concerns with respect to PZQ distribution, the study found a perceived lack of diagnosis of schistosomiasis and experiences with PZQ side effects. The community’s concerns about the lack of diagnosis of the disease could point to a lack of awareness about how MDA works and to inadequate information about drug administration and possible side effects. Furthermore, concerns about drug side effects confirm an earlier study which revealed that for those heavily infected with the disease, drug reactions present in the forms of nausea, vomiting, abdominal pain and bloody diarrhoea [40]. It appears that this is not usually adequately explained to the community through health education and sensitisation. This lack of proper explanations could be the reason why some of the community members refuse to take the drugs in some cases. Concerns about drug side effects are critical aspects of any treatment measure that must be addressed if drug uptake is to be sustained, especially in endemic communities. Our results are supported by studies along Lake Victoria in Uganda and Zanzibar, Tanzania that reported drug shortage challenges and concerns about drug side effects and drug administration [15, 16, 28, 41]. However, our research contrasts with a study in Ghana that found no significant association between proper diagnosis and health service utilization [5]. This could be because of variations in the level of knowledge about the disease reported by studies which reveal inadequate knowledge about the diagnosis of schistosomiasis by communities in Uganda [30], and health seeking [42]. Refining knowledge of MDA and addressing issues of side effects could improve health seeking from modern sources [28].
Regarding sources of health seeking, our current study found that people seek treatment for schistosomiasis-related signs and symptoms from various sources for different reasons. VHTs are the main source during MDA, whereas other sources are mainly sought when MDA delays or people do not receive the PZQ. This is possible because VHTs are those who distribute PZQ during MDA [43]. They are also the first point of contact for those with signs and symptoms of the disease. Strengthening the community-based volunteer approach to drug distribution by increasing the number of VHTs, adequately facilitating them and giving them more powers to manage the MDA, could go a long way in ensuring services are easily accessible and owned and managed by the communities for sustainability purposes. Results from the study further revealed that delayed MDA forces communities to seek treatment from private facilities, whereas others go to traditional sources for mild conditions or other unexplainable ones, and they only go to government hospitals for severe signs and symptoms. This is likely to compromise the efforts made in ensuring that people seek treatment from modern sources only. Our findings resonate well with a study in Eastern Uganda that also showed people seek health services from various sources for different reasons, with some of them going to traditional sources. However, this was reported to be mainly due to a lack of knowledge of the disease and long distances from health facilities [7, 15, 23, 28].
Based on Kroeger’s model of predisposing factors, our current study found that gender, geographical difference, and social network, among others, determine the community’s health seeking behavior. The gender aspect is likely to be true because of the cultural beliefs that attribute decision-making to men in these communities. Understanding this gender factor is crucial for planning, designing, and implementing treatment and awareness campaign programs because it facilitates the inclusion of both men and women. A similar study also revealed that gender norms contribute to women and children missing medication while fetching water, washing clothes and utensils and men fishing, even though the study focused on the MDA program only but not in its absence [44]. Additionally, studies on other diseases instead linked women’s lack of decision-making to the stigma associated with the disease, shame, and discomfort, among others [17]. This could be possible because of the different perceptions and interpretations of various diseases.
Concerning disorder- and perception-related factors, our current study found that, for acute and severe signs and symptoms, people go to government hospitals, whereas those perceived to be chronic and less severe are not acted upon. Meanwhile, lower health facilities, herbs, or witch doctors are turned to for conditions for which the cause and type of illness are not known. This is most likely due to the absence of drugs and poor health services, leaving the communities with no choice but to try those alternative sources mentioned. However, this could also be attributed to myths and misconceptions held by the communities regarding not only the disease but also PZQ [41]. Other studies have also indicated that health seeking from either modern or traditional sources is influenced by the perceived severity of signs and symptoms [23, 39, 45].
Regarding health service factors, we found that long waiting times, health workers’ negative attitudes, drug shortage, lack of equipment, and high cost of medication hinder health seeking from modern sources. This could explain the community’s choice of health seeking from alternative sources such as clinics, drug shops, witch doctors, and herbalists. Addressing some of these challenges could probably motivate communities to seek treatment from modern sources, thereby increasing trust in the PZQ and its uptake. Our study is supported by findings from a study in Eastern Uganda that demonstrated institutional factors like inadequate preparation of children and teachers and facilitation of teachers impede biomedical health seeking [26].
Community-related factors, such as long distances, poor and inaccessible roads, and high cost of transport, were most pronounced among all other factors influencing participants’ health-seeking behaviors. This can discourage communities from going to health centers and hospitals, which could explain why people resort to nearby sources. Our current study is inconsistent with a study in Ghana that found the perceived severity of disease, rather than long distance, was the main driver of health seeking from modern sources [5]. Possible reasons for variations could be due to the difference in geographical settings whereby our study setting had some communities that are geographically hard to reach, while the setting in Ghana could e different.
Finally, we found that Kroeger’s model (Fig. 1) has been relied upon or modified by several other studies to explain illness health-seeking behavior generally but not specifically with respect to Schistosomiasis [4, 14, 25, 46–48]. However, we found that the model could not fully explain certain aspects of health seeking regarding schistosomiasis treatment using MDA. First, it could not explain the use in scenarios where treatment services are brought to the communities like the case of VHTs distributing PZQs to communities, as opposed to the communities going to the facilities. Second, the use of VHTs as an important component of the PZQ-MDA program is also omitted from the model. Third, Kroeger combines both health service and community factors into a single set of factors called health serviceؘ–enabling factors. This makes it difficult for a reader to understand their interpretations. However, it would be better for such factors to be looked at separately. We did not find Kroger’s model, or any other model that explains communities’ past experiences with PZQ MDA, to be reliable in making certain decisions regarding taking PZQ, especially when such a drug treatment program is delayed. Therefore, we propose a modified version of the model that integrates the VHTs as another source of health seeking, health service factors, and community factors treated separately and a model that mirrors communities’ past experiences with MDA (Fig. 2). We believe that this modified model will help further explain health seeking regarding the illness that requires, in particular, the involvement of volunteers (e.g., VHTs), as well as explain where people seek treatment in the absence of well-functioning MDA.
Modified Conceptual Framework