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Lymphatic Filariasis (LF) is a vector borne, parasitic filarial nematode disease that has been targeted for elimination (Morbidity & Mortality Weekly Report 1993). Wuchereria bancrofti, which accounts for 90% of all filariasis cases worldwide, affects approximately 107 million people (Ottesen et al. 1997). In 1995, WHO ranked LF as the second leading cause of disability worldwide after mental illness (WHO 1995). The Global Programme for the Elimination of Lymphatic Filariasis (GPELF), launched in 1998, aims to eliminate LF by 2020 (Zagaria & Savioli 2002).
In Guyana, the Ministry of Health (MoH), in collaboration with other Non-Governmental Organisations (NGOs) such as Pan American Health Organisation/WHO (PAHO/WHO), embarked on a programme to reduce the transmission of the disease and target morbidity in 1999 (UNDP 2000). The LF Elimination Programme in Guyana was initiated and a plan of action was developed, which included mapping of LF infection, assessing morbidity and developing a strategy of mass treatment.
The economic impact of LF can be related to the costs borne by infected and affected individuals and households, failure of production of individuals and communities in areas endemic for filariasis, and the costs sustained by the government (Haddix & Kestler 2000). Ottesen et al. (1997) envisage that further studies will show that the impact of LF is much greater than had been previously thought. For the chronic manifestations, such as hydrocele and lymphoedema, there may be a substantial decline in productivity, which may last a lifetime (Haddix & Kestler 2000). There is also the burden on the healthcare system in relation to the treatment and management of the acute and chronic effects of filariasis infection (Molyneux & Taylor 2001). At a national level, the cost may also be related to the resources, which have to be spent on any national filariasis elimination or control programme (Ramaiah et al. 1999). A study by Chu et al. (2010) found that worldwide, approximately 3 million newborns were protected during the first 8 years of the GPELF because they were born into areas where the disease was no longer being transmitted. This translated into more than US$ 2 billion net economic benefit (Chu et al. 2010). The financial and human resources which must be spent by the nation could be redirected.
The effects of chronic filarial infection can lead to psychosocial issues such as sexual dysfunction, social disgrace and reduced marital prospects (Ahorlu et al. 1999; Molyneux & Taylor 2001). Many persons are made to feel like outcasts within their own community (Coreil et al. 1998). Evans et al. (1993) indicated that although successful control programmes needed widespread acceptance by the communities, there is little information about the influence of socioeconomics on acceptance and compliance or whether other options would be more or less cost effective. Furthermore, other authors have emphasised the need for more studies on sociocultural issues for any campaign against LF to be effective and successful (Wynd et al. 2007). In Guyana, studies on socioeconomic burden are scarce, and it is therefore difficult to truly understand the problem and deal with it comprehensively.
This study presents the findings of an in-depth study of the socioeconomic impact of LF on persons with chronic LF.
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This study showed that overall there was no significant difference between the two groups with respect to socioeconomic status; however, the socioeconomic impact was felt more by persons who had chronic LF. Generally, most persons did not consider themselves as burdens to their families; however, cases were much more likely to consider themselves as burdens. This can be compared with findings from Babu et al. (2002) where patients with chronic filariasis present as burdens to the family and community and findings from Gyapong et al. (1996) which showed that persons with advanced disease do consider themselves as economic liabilities to their families.
This study reveals that cases had to change jobs more often than controls and this was significant. One respondent reported that she was a hairdresser but when she developed chronic LF she had to settle for less lucrative employment as a part-time cleaner because she could no longer stand up for long periods. Another indicated that she was a cook but then she too had to settle for reduced hours. Several respondents pointed out that when they were diagnosed with chronic LF, they had to change jobs or they lost their jobs because of the loss of mobility and the rigours of their employment activities and the strain it put on them, thus exacerbating their condition.
The fact that cases also reported that they had lost their jobs, and the number of persons with chronic filariasis who had to change jobs reinforces the economic burden of the disease. Previous studies have shown that filariasis affected about 66% of patients from a rural area in India with respect to economic activity as a result of having to discontinue work, reducing working hours and changing jobs (Ramaiah et al. 1997).
There are several possible avenues of employment available to persons with chronic LF. These include working as cashiers, customer service or call centre agents, receptionists, website developers/software designers, clothing/furniture designers, and even counsellors or consultants for LF Elimination Programmes. NGOs such as the Institute for Private Enterprise Development (IPED) and PAHO could collaborate to provide training and advice in these areas.
This study also showed that both cases and controls spent money on treatment and transportation; however, cases were more likely to spend money on transportation. This is in contrast to a study by Babu et al. (2002), who found that patients with chronic LF spent most of their money on medicine. In Guyana, medication from the Palms is free and provided by the state, transportation is not. Some respondents indicated that medication, especially antibiotics, were not always available from the clinics, and therefore, they sometimes had to purchase drugs. Further, persons with elephantiasis may not be inclined to travel with the ‘public’ mini buses and would resort to the more expensive private ‘hire cars’ or taxis.
This shows that more patients with chronic filariasis should be provided with transportation to and from the clinic or health centres where they could be counselled and treated. This need not be done every day but can be done once a week; or every other week since the Palms is used as a Filariasis Clinic only once a week. Generally, most persons did not consider themselves as burdens to their families; however, cases were much more likely to consider themselves as burdens. This can be compared with findings from Babu et al. (2002) where patients with chronic filariasis present as burdens to the family and community and findings from Gyapong et al. (1996) which showed that persons with advanced disease do consider themselves as economic liabilities to their families. Both Government and NGOs should consider financial assistance for persons with chronic filariasis. Indeed, both cases and controls believe that financial help should be given to persons with chronic LF.
The psychosocial effects of filariasis are well documented in India (Kumari et al. 2005), in Thailand (Rauyajin et al. 1995), in Haiti (Coreil et al. 1998) and in the French Polynesian islands (Kessel 1957) where feelings of shame and inferiority, negligible marriage prospects, sexual inadequacy, a tendency to keep the disease hidden and stigma and discrimination by other members of society have been reported. This study confirms that patients with chronic filariasis suffer from feelings of anxiety, embarrassment and loneliness. This reflects the data obtained from a recent study carried out in Sri Lanka where 37% of lymphoedema patients attending filariasis clinics were negatively affected by their condition. 6% of the participants related that they had problems interacting with their families and 8.5% felt depressed; 12.6% felt lonely (Wijesinghe et al. 2007). Community-based interventions would be important in helping to communicate the information necessary to help LF patients deal with critical psychosocial issues (Wynd et al. 2007).
More of the cases felt hopeful about the future and this finding bodes well for the receptiveness of patients with LF to counselling. This study points to a necessity for the establishment of Support Groups where issues and problems can be discussed in an atmosphere of empathetic understanding. This can be done at the Clinic itself and facilitated by a counsellor and with no extra cost for transportation since that would have already been provided. Alternatively use of social networks and services such as Skype and Google+ may be considered as many Guyanese either have desk top computers, laptops (Government is presently rolling out its ‘One Laptop Per Family programme as part of Guyana's Poverty Reduction Strategy) or access to either through neighbourhood Internet cafes.
A media sensitisation campaign should be implemented about the services offered by the Palms for both filariasis management and treatment as well as skin conditions. This will be helped by the fact that the majority of persons own TVs or radios and emphasis should probably be on radio ‘infomercials’.
More females (68%) presented with chronic LF than males and this is similar to findings from a study in Orissa India (Babu et al. 2001). Although the researchers found that overall more men (15%) presented with chronic clinical manifestations than women (10%), further investigation revealed that elephantiasis affected women (4.5%) more than men (2.5%). The authors indicated that because hydrocele affects only men, this skewed the overall results. In this study, women were probably more motivated to attend the Filariasis Clinic because, unlike hydrocele, elephantiasis is not a condition that is easily hidden.
This study also found that Afro-Guyanese accounted for the majority of the cases and this is similar to findings from Chadee et al. (2003) and Nathan and Stroom (1990). Consideration of gender and race could, therefore, possibly influence the direction of an Elimination programme by refocusing the information available at health centres in areas which are predominantly Afro-Guyanese and ensuring that Afro-Guyanese women are adequately represented in any TV/radio ads or infomercials. Also a pilot exercise for the Support Groups mentioned earlier could be initially composed of a few Afro-Guyanese women (where their successes and pitfalls could be documented and studied), thereby paving the way for more successful Support Groups throughout Guyana.
Community-based interventions would be important in helping to communicate the information necessary to help LF patients deal with critical psychosocial issues (Wynd et al. 2007). The quality of daily life for persons without chronic filariasis was better in terms of mobility and therefore public health programmes would be necessary to specifically address this imbalance. The Clean-Apply antiseptic cream-Regular movement-Elevate (CARE) programme could be used as a platform for training persons who actually have chronic LF and whose mobility was improved to take care of other chronic LF sufferers. This would have a positive effect on the elimination programme and enhance its sustainability.
It is noteworthy that both groups expressed positive emotions overall and that cases were more hopeful about the future than controls. This may be a reflection of the coping mechanism of the cases, as well as the counselling and treatment provided by the clinics. But a more important area of intervention would be a study, which focuses on determining how having chronic LF has specifically affected their productivity and also determining appropriate employment activities specially tailored for persons with chronic filariasis. A number of possible activities have been listed. These could serve as an alternative to financial assistance (which would have to be provided by the Government or NGOs) and will allow patients with LF to make a worthwhile contribution to their own development, the community's development and the country as a whole.