Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal

Lymphatic filariasis (LF) is a Neglected Tropical Disease (NTD) that causes significant disability worldwide, with an estimated 36 million people suffering from chronic complications of the disease [1]. LF is primarily caused by the parasite Wuchereria bancrofti, which is transmitted to humans through the bite of an infected mosquito. Infection is commonly acquired during childhood, initially causing unseen damage to the lymphatic vessels. Disfiguring and stigmatising symptoms such as lymphoedema and hydrocoele can transpire later in life. Lymphoedema is most commonly a painful swelling of the limbs that results from persistent aggravation of the lymphatic vessels and consequent lymphatic incompetence. The condition, which has both acute and chronic phases, may affect a person’s capacity to walk, stand or sit, as well as their ability to carry out activities of daily living [2, 3]. Hydrocoele is an intra-scrotal swelling that has also been shown to impact activities of daily living, and as a consequence affects men’s economic activity, productivity and relationships [4‐7].

Leprosy is also a NTD associated with impairment, activity limitation and marginalisation. It is caused by Mycobacterium leprae bacteria, and infection in its early stages is characterised by hypopigmented patches in the skin with loss of sensation. The long-term physical impairments can be wide-ranging, particularly if treatment is delayed. M. leprae targets Schwann cells, with the resultant neuropathy leading to a possible loss of sensory, motor and autonomic function. Secondary effects of peripheral neuropathy can include visible impairments to hands, eyes and feet, depending on which nerves are affected. In many countries where leprosy is endemic, it is the visibility of secondary effects such as painless wounds, lagophthalmos and foot drop that are stigmatising [8]. In the last 30 years, control of leprosy has improved significantly, particularly through the combined efforts of the WHO and non-profit organisations to provide Multi-Drug Therapy (MDT) to all infected people. Over 15 million people were reported to be cured of the disease between 1985 and 2010 [9]. The number of new cases detected annually is showing a decline, falling from 407,791 globally in 2004, to 210,758 in 2014 [10, 11].

Beyond the physical challenges that each disease is associated with, the effects of stigma can be profound. Men affected by LF face challenges in establishing relationships and in securing financial stability, with reports that some patients having been prohibited from trading their produce at local markets [4, 12]. Multiple studies have documented the limited marriage prospects of women with lymphoedema; explanations given were that these women fail to meet the aesthetic standards held by society, and that their ability to assist in harvesting home-grown produce is restricted [12, 13]. A study in East Nepal found the behaviours of rejecting and ostracising a wife affected by leprosy, or taking a second wife as a replacement, were common [14]. The psychological stresses of these exclusions can be severe, particularly in South Asian countries, where to be excluded from a family or community is to be deprived of any sense of purposeful function in life.

Regular self-care can prevent worsening of lymphoedema [15]. The WHO-recommended basic lymphoedema management activities include limb washing, elevation, exercise, skincare, wound-care (applying creams and dressings) and the protection of feet with appropriate footwear [16]. These practices can be taught through community groups and can be performed by affected people at home. The emphasis on home-based self-care and simple community-level intervention resonates with the WHO’s disability prevention guidelines for leprosy; these suggest that while healthcare workers may be the primary source of disability prevention advice, self-care with guidance from peers similarly affected by leprosy can be extremely beneficial [17]. The commonalities between the basic interventions for LF and leprosy include daily home-based self-care, procedures for which include the following: avoidance of injury; skin and wound care; prevention of contractures; compliance with footwear advice and interventions to prevent activity limitation. Other morbidity management interventions that may be needed for both groups include advice and support for caregivers; surgery to address impairments; schemes for economic upliftment; advocacy and social mobilisation [15].

The supportive and motivational effects of attending community-level self-help groups (SHGs) are promoted for leprosy and LF alike [15, 18]. The benefits of SHGs for leprosy are well documented, and participation in SHGs has been shown to improve patients’ lives with respect to both disability prevention and social participation [19, 20]. In Nepal, there are several organisations that facilitate SHG development. The Nepal Leprosy Trust (NLT) facilitates 101 leprosy SHGs in four districts in the Janakpur Zone of the Central Development Region of Nepal (Fig. 1). Through a range of activities including disability management, micro-enterprise, initiating and implementing community development projects, the SHGs have been shown to have gained community respect, which has increased opportunities for participation in community activities. NLT’s empowerment approach has led to a decrease in community stigma [20, 21].

Community-based care and morbidity management interventions have been shown to have similar benefits for those affected by filarial lymphoedema [22‐24]. The Ministry of Health, Nepal had only recently begun to scale up Morbidity Management and Disability Prevention (MMDP) activities as part of its National LF elimination strategy, therefore there were no such community-based programmes for people affected by filarial lymphoedema in the south of the Central Development Region. This provided an opportunity to provide training and care to people affected by LF by integrating lymphoedema management with the leprosy self-care programme implemented by NLT.

The WHO LF MMDP guidelines do suggest the integration of MMDP services with those of other disabling diseases, such as leprosy [15]. However, there is currently little evidence to guide how these integrated services can be practically implemented. The aim of this study, therefore, was to determine the feasibility of integrating people affected by filarial lymphoedema into SHGs for people affected by leprosy, in the catchment districts of NLT in the Central Development Region of Nepal. The study had two main objectives: to determine whether there was a need for integration, and to evaluate the perspectives of people affected by each disease on the feasibility of an integrated service. The authors sought to develop an understanding of the affected people’s knowledge of the alternate disease; their perception of stigma towards the disease in their community, and their willingness to participate in an integrated service.

While WHO recommends integration for MMDP services for LF and leprosy, this study is the first in Nepal and elsewhere to investigate the feasibility of integrating LF and leprosy care at the community level. Within the two participant groups surveyed, a higher proportion of leprosy-affected participants supported themselves financially, compared to LF-affected participants, 42% of whom relied on family or charitable support. Nearly 77% of the leprosy-affected participants supported themselves with small businesses, growing vegetables or keeping animals. This reflects another feature of the NLT SHGs in that they function as a micro credit unions; members can avail themselves of loans from the group to start up income generating projects. Loans are paid back at interest rates set by the group members. A caveat is that loans can only be applied for after the member has saved a given amount into the group’s funds. Both groups had suffered from the effects of disease for a similar length of time, spanning 10–12 years on average.

The survey revealed that participants affected by leprosy were shown to have significantly greater knowledge of self-care practices than participants affected by LF. Participants affected by leprosy were also implementing such practices more frequently. This result was to be expected given the established involvement of participants affected by leprosy in SHGs, but may be less frequent among those who do not attend a SHG. Despite the relatively low proportion of participants affected by LF practicing self-care, which may be because they are poor and cannot afford to buy soap, cream or shoes, these figures were higher than those in other studies in Nepal, where only a quarter of participants had knowledge of or practiced self-care [27]. Others have reported that self-care is considered to be of particular importance by leprosy SHG members who perceived it to be efficacious for the prevention of worsening disabilities [28].

Whilst the majority of LF-affected participants were aware that some services were available, all participants affected by leprosy were aware that healthcare services were available for their condition (including SHGs). This finding was also to be expected due to the selection of those affected by leprosy through the SHGs. This was reflected in responses regarding the access of participants to services, with only one LF affected participant accessing a service weekly, and 75% never accessing services, compared to 94% of participants affected by leprosy accessing services at least weekly (primarily SHG attendance). Despite the low proportion of participants affected by LF practicing self-care this is higher than other studies in Nepal where only a quarter of participants had knowledge of or practiced self-care [27]. LF affected participants’ limited interaction with health services is consistent with findings from a situational analysis in Ghana where community health workers reported that the management of lymphoedema conditions was rare, and cited the associated social stigma as a key reason for their reclusion [29]. The majority of participants affected by LF stated that they would like to access services more frequently, most commonly SHGs and hospital services, but that cost was the major barrier. This is in line with other studies that have shown that cost of services is a major barrier to patients accessing care [30].

The data showed that those affected by leprosy have greater access to care and greater knowledge of how to manage their condition compared to those affected by LF in the same communities, suggesting that the SHG platform is a good method to increase access and knowledge of self-care for LF affected people in this area. SHG attendance does not have a direct associated cost, though daily wage earners may sacrifice part of their wage to attend a SHG meeting. It is essential that these realities are communicated to people affected by LF to increase access to this service as part of the integrated programme. Additionally, SHGs report that they undertake home visits to ascertain whether people are gaining access to services [21]; this could further increase LF affected peoples’ access to care.

The majority of LF and leprosy participants were aware of the other condition, with greater awareness found by those affected by leprosy. Furthermore, almost half of the participants affected by LF and over 80% of participants affected by leprosy were aware of the other condition knew that it could be managed. The most accurate source of information about the other condition appeared to be the media. Those receiving information from FCHVs appeared to be inaccurately informed as many participants stating FCHVs as their source also believed that the condition could not be managed. While the SHGs were a less frequently stated source of information, this appeared to be an accurate source of information as fewer participants believed that the condition could not be managed. This is concurrent with previous studies in which the SHGs state that raising social awareness of leprosy related issues is an activity readily undertaken by the groups [21], and suggests that increased training and awareness is required for FCHVs in this area.

The EMIC scores for both participant groups were similar, with high scores for leprosy perception by community members reported in other areas [31]. The major aspects of perceived social stigma by both groups were attitudes towards concealment of disease, with over 8O% of participants affected by LF believing people affected by leprosy were likely to keep others from knowing, and over 90% of participants affected by leprosy believing the same for LF. The other domains with high levels of perceived stigma were affected peoples’ embarrassment and community members knowing that someone had the disease would feel uncomfortable. The high EMIC scores may be indicative of high levels of experienced stigma in both groups developed through their own experiences. This is supported by previous reports of people with lymphoedema reporting feelings of isolation and discrimination, including expectations of such behaviour, within their communities [2, 12, 32‐36]. In particular, a study of perceptions in Ghana found that while people affected by LF were accepted and cared for by the community, as a result of their own feelings of shame, they did not attend social events [37]. Similarly, studies have shown that people affected by leprosy conceal their condition and withdraw from society before they experienced any negativity in order to maintain social integrity [38, 39]. The extent to which people feel stigmatised, unable to develop good relationships or integrate into communities may also be related to the severity of their condition and the level of disability they experience. This was not examined in the current study, but could provide valuable insights if taken into account in future studies.

Many individuals in both groups felt that the other condition would cause problems in ongoing marriages, as well as issues in individuals with the other condition getting married. Again, this is supported by previous studies examining the marital difficulties, worries and experiences of people affected by lymphoedema [2, 12, 33‐35, 37, 40] and people affected by leprosy [14, 41, 42]. This supports the assumption that the high EMIC scores are in part due to experiences of the participants due to their own condition and perceived and/or internalised stigma.

Despite the high levels of perceived stigma, attitudes towards integration of services were positive with more than 85% of the LF affected participants stating that they would attend, or were likely to attend such an integrated SHG. There are multiple elements that likely contribute to this enthusiasm which included the following

Participants affected by leprosy that already access the SHGs were shown to be even more willing to integrate, with a higher proportion of the participants affected by leprosy willing to perform all activities when compared to participant affected by LF. This finding reflects the eagerness of SHG members to help others in their community, previously identified as a key motivation behind SHG facilitation [21]. The higher proportion of participants affected by leprosy willing to perform each of the activities may also be explained by the existing membership of groups performing such activities, and therefore a greater understanding of what this entails. LF participants’ willingness may change following training and opportunity to integrate into the SHGs.

Previous studies have shown that the SHGs in this area have a significant impact at the community level, increase participation and improve perceptions in the local community of and increase community trust [20, 21, 28]. This, coupled with the enthusiasm of the participants affected by LF to join the SHGs, indicates that integration of people affected by LF into the groups would be a welcome and positive step towards increasing LF affected peoples’ access to care.

This study concludes that the integration with community-based leprosy SHG services could increase LF affected peoples’ knowledge and practice of self-care. The findings suggest that expansion of the SHGs to deliver MMDP services to LF affected people is feasible in terms of the willingness of both existing and prospective members. From a wider perspective, the integration of MMDP programmes presents an opportunity to meet the complex needs of global NTD control. While significant progress has been made in recent decades, achieving ambitious disease elimination targets remains challenging. The strain on resources can be ameliorated through co-ordination of activities of partner organisations and government sectors sharing a commitment to NTD control to contribute to the scale-up of NTD programmes that is required to achieve elimination goals.