Introduction

Lymphatic filariasis (LF) is one of the most prevalent neglected tropical diseases (NTDs), affecting over 120 million people worldwide, and is responsible for the highest health and socio-economic burden among NTDs. It is the second leading reason for physical disability and causes 5.25 million disability-adjusted life-years (DALYs) with a $5.8 billion economic burden worldwide [1,2].

Parasites causing LF are transmitted through mosquito bites, typically acquired in childhood [1–5]. If left untreated, the condition can lead to chronic manifestations, such as lymphedema [3]. These visible swellings in limbs, groin in men, and, occasionally, breasts in women worsen through painful episodes of acute dermatolymphangiodenitis, commonly known as acute attacks, caused by poor skin care. Advanced lymphedema results in limited mobility, decreased productivity at home and work, and, consequently, loss of earnings economically [6,7]. While acute attacks at any stage of lymphedema require complete rest, medication, and social support for at least 1–2 weeks at a time, putting further strain on the whole family [8].

Apart from the immediate impact of LF on the person and families, visible disfigurement can also lead to social exclusion and mental distress, impacting overall well-being [9]. A recent study reported a high burden of mental health conditions among persons affected by LF (12.6% to 71.7%), with a greater tendency towards suicidal ideation (18.5%) [10]. Different factors, such as adverse socio-economic and environmental aspects related to the wet season, were found to be associated with morbidity in LF [11]. Moreover, people with LF are often avoided by their community, and this was one of the significant social impacts of LF, as reported by Zeldenryk et al. in a critical review [12]. Additionally, studies from low- and middle-income countries suggest that experiencing such stigmatised attitudes has a bidirectional impact on increasing disease burden and worsening mental health, further acting as a significant barrier to healthcare-seeking behaviour [13].

Health-seeking behaviour is a complex concept that can be defined as the steps taken by an individual who perceives a need for help in attempting to solve a health problem [14,15]. Cultural beliefs, socio-demographic status, women's autonomy, physical and economic accessibility, and health system structure can lead to poor utilisation of healthcare services [9]. In addition to these factors, healthcare seeking for NTDs, such as filariasis, can also be compromised due to the power dynamics within communities and the disempowerment of affected individuals, which deprives them of decision-making capacity in their households [16]. Moreover, in developing countries like Bangladesh, out-of-pocket household health expenditure (63.3%) is the dominant source of health financing, followed by government subsidies; therefore, most people with LF could only receive partial care or not use formal healthcare at all [17]. Evidence supports that people with NTDs are reluctant to seek treatment, further intensifying their diseases [13]. This delayed help-seeking behaviour potentially reduces treatment efficacy, leading to sub optimal recovery rates, sustained impairment, and increased visibility of the illness, thus exacerbating negative stereotypes and discrimination in society [13]. As a result, people suffer from severe mental distress, such as suicidal ideation and depression, and negative emotions like shame, fear, and stress [13]. Therefore, delayed and sub-optimal care-seeking leads to a vicious cycle that intensifies the burden of disease, exacerbates stigmatisation, and cumulatively negative influence has a cumulatively negative influence on poor mental health.

While worldwide studies have explored the social and healthcare experiences of persons with LF, there is a dearth of evidence in Bangladesh [12]. Although Bangladesh eliminated LF as a public health problem in 2023, over 70 million people remain at risk of developing LF, especially in high-endemic areas of the northern region [3,18]. Only one study was conducted to operationalise and strengthen the quality of life tool for persons with LF, which provided some environmental and social challenges faced by those with LF [17]. However, a more comprehensive presentation of familial, social, and healthcare-seeking practices and experiences is crucial to influencing policymakers to support evidence-based interventions that incorporate a rights-based approach. Therefore, this study aims to address this critical evidence gap by exploring the pattern of healthcare seeking, experiences of stigma, perceived challenges, and recommendations from the daily lives of PWLF in two high-prevalence districts in Bangladesh, together with the accounts from healthcare providers.

Methods

Results

A total of 28 participants were interviewed between January and March 2024: 20 People with LF and eight stakeholders. Out of 52 on the NFEP patient list, eight had moved out of the area, 14 were unwell, and 10 could not establish a meaningful conversation.

The participants affected by LF (N = 20) (PWLF) were between 40 and 63 years old (Table 1). Among them, nine were male and 11 were female, representing the gender split in Bangladesh. All participants had lymphedema, with the condition’s duration ranging from 5 to 20 years. NTD stakeholders (n = 8) were national programme consultants of a local non-profit organisation, upazila (sub-district), field assistants, health and family planning officers, representatives of an international non-governmental organisation, and researchers (Table 2).

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Table 1. Socio-demographic characteristics of the study population (people with LF).

https://doi.org/10.1371/journal.pntd.0013384.t001

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Table 2. Socio-demographic characteristics of study population (NTD stakeholder).

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The findings from the interviews were organised into five major themes (Fig 1): (1) knowledge of LF among affected individuals, (2) social experiences of living with LF, (3) impact of LF on overall well-being, (4) healthcare-seeking behaviour and related challenges, and (5) perceived solutions.

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Fig 1. Thematic distribution of major findings.

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Discussion

Lymphatic Filariasis has been identified as the second leading cause of disability worldwide. Although research on care pathways is available from some low- and middle-income countries (LMICs), there is a limited exploration of the lived experiences of people with lymphatic filariasis (LF) in Bangladesh, despite having several endemic zones [20,23,33–37].

This study interviewed individuals with lived experiences of LF and NTD stakeholders to understand their views on healthcare-seeking behaviour while discussing their concerns regarding various challenges to utilising healthcare services. Our study observed long-term sadness, worry about the future, and low life satisfaction among the people affected by LF. Similarly, evidence from Nigeria, Togo, and India reported that the prevalence of depression ranges from 20% to 90%, and due to its chronic manifestation with acute episodes of fever, people experience a double burden of compromised physical health and disability [38–41].

Our findings demonstrated that people affected by LF had limited knowledge about the symptoms, causation, and mode of transmission [9,42]. These findings are similar to those of a study in Zambia, where participants perceived that LF was caused by eating expired food, witchcraft, or using objects previously used by individuals affected by LF [16]. Other studies have also shown a limited understanding of LF transmission, including the role of mosquitoes as vectors. A review study found that low awareness of NTDs and their severity can lead to delays in healthcare-seeking among affected individuals, which aligns with our study [43]. We found that participants affected by LF from northern Bangladesh used local terminologies when referring to the names and symptoms of the disease. In Bangladesh, LF is locally known as “godrog”, whereas in Zambia, it is referred to as “musakasa” (meaning swollen limbs) and “erisipela or dicipela” (bacterial skin infection) in the Dominican Republic [16,44]. Local terminologies should be considered when developing information, education, and communication (IEC) materials that positively influence the care pathway, as recommended by participants in this study [45]. Enhanced community awareness may reduce delays in care-seeking and also support the reduction of high levels of stigma within the community, although knowledge change itself is insufficient. Combining contact intervention and mass awareness can be a powerful approach to reducing stigma. Contact-based interventions, particularly indirect social contact (ISC) approaches involving active engagement, such as group discussions or problem-solving exercises based on real-life stories, are effective in reducing mental health-related stigma, especially in low- and middle-income countries [46].

Our data on participants’ social experiences provided valuable insights regarding the drivers of stigma experienced by individuals with LF. While the physical manifestations of LF, particularly lymphedema, undoubtedly contribute to stigma due to altered appearance and looks, participants’ narratives suggested that a lack of accurate knowledge about LF within communities, coupled with fear regarding its potential transmission, contributed to social withdrawal and isolation among persons with LF. Furthermore, the internalisation of local beliefs, such as the perception of LF as a form of divine punishment, seemed to influence participants’ self-worth and acceptance of their condition, potentially exacerbating internalised stigma. Thus, our data suggest that while physical appearance is a factor, the social experiences of individuals with LF are shaped by a complex interplay of limited knowledge, fear of contagion, and cultural and religious beliefs, all of which contribute to the overall burden of stigma. Consistent with our findings, several studies also identify fear of contagion and the inability to fulfil societal roles as significant contributors to stigma among individuals with LF [47–51].

Experiencing humiliation in the community is a common scenario among people with skin NTDs like LF, leprosy, and onchocerciasis [43,52]. This aligns with our study findings, where individuals affected by LF reported feeling shame and disgrace, as well as experiencing uncomfortable stares and avoidance from their community. Therefore, such social exclusion results in higher levels of disability, incomplete education, and unemployment, catalysing a downward spiral into poverty [38]. Community-level stigma can also directly impact mental health, cause delays in diagnosis and treatment, and consequently, the advancement of the disease [53]. A study in Togo found that over 70% of respondents exhibited a higher rate of depression according to the DUKE-AD scale (score >30), with this rate escalating as lymphoedema progressed to more advanced stages [40]. Women affected by LF living in the Dominican Republic, Ghana, and Thailand experienced more significant stigma than men, which is also observed in our study [25,54,55]. A pair of studies from Ethiopia exposed that women with LF faced divorce, were denied marriage, and missed out on motherhood [55,56]. As identified in other settings, including Ghana and Haiti [25,49,50,57], people with LF received support for self-care and accessing healthcare, which helped them cope [49,50].

Our study findings also revealed that people affected by LF received assistance with household chores, self-care management, and utilisation healthcare services from caregivers. As has been identified in other settings, including Ghana and Haiti [25,49,50,57], this support often helped affected individuals cope with the conditions and stigma from the community [49,50]. Family support should be an opportunity to ensure social support for people affected by LF and their caregivers. There is a need for future research to develop culturally contextualised family-based interventions that can combat stigma and promote mental well-being, both for people affected and carers. Thus, support for caregivers is considered essential when developing community- or family-based mental health support services.

In our study, participants sought treatment from different levels of formal and informal healthcare facilities to find cures for their chronic pain and complications. However, other studies have found that traditional healers remain the primary healthcare choice for many people with LF in Bangladesh [58]. In Sri Lanka, acupuncture and traditional remedies are commonly used in conjunction with Ayurvedic treatments for lymphoedema [59,60]. Consequently, a significant number of patients delay visiting medical facilities until their symptoms have deteriorated and pain has intensified, which adversely impacts the effectiveness of treatment [59,60]. Moreover, various studies have identified a significant decline in motivation to seek care upon realising the chronic nature of the condition and the improbability of complete recovery [44,61–63], and people do not take treatment consistently [45].

Additionally, lack of satisfaction with prescribed drugs caused low therapeutic adherence among the participants, which was similar to that observed in Ghana, where people refuse to ingest LF medicines due to the fear of adverse drug reactions and misconceptions about the condition [57]. Moreover, some studies have also discussed how experiencing stigmatised attitudes from healthcare providers impacts the healthcare-seeking attitudes of persons with LF. We were surprised that our participants did not recall facing any stigma from healthcare providers [17,64]. Such interactions are often common in particular settings where healthcare providers have limited LF-specific training, resulting in neglect, verbal judgment, or a lack of empathy. This situation reflected the recent efforts in the NFEP programme of the Bangladesh Government to improve health service delivery. However, this may also indicate that patients have low hopes of care and thus did not translate neglecting behaviour as stigma. Alternatively, participants may also have chosen not to discuss the negative experiences due to fear, loyalty, or social desirability bias. Therefore, future studies should aim to address this gap to better understand the relationship between healthcare providers and individuals with LF in shaping care pathways.

Regarding the barriers to seeking healthcare among persons affected with LF, our study findings align with the Social Ecological Model (SEM) [22], a theoretical framework that provides a comprehensive understanding of how different factors interplay and influence people’s healthcare-seeking behaviour and health outcomes. Low health literacy about LF, overwhelming emotional responses, and distress related to LF were common at the individual level, and such perceptions resulted in delayed care seeking. Interpersonal connections, defined by caregivers’ involvement and family support, played a vital role in ensuring access to care. However, the gender disparity and social stigma affected females particularly and resulted in reduced help-seeking tendencies. On the other hand, the dominant role of community-level stigmas and misconceptions of LF pushed people with LF towards experiences of judgement and social withdrawal, further reinforcing delayed care seeking. At a system level, structural barriers marked by long distances, low transportation facilities, and unavailability of mental health services reduced people’s dependency on the formal health system and encouraged reliance on informal care. Finally, at the policy level, participants expressed their concerns about the need for stronger governmental efforts, such as providing financial assistance or accessible rehabilitative services. Therefore, applying SEM underscores the need for integrated efforts to improve the overall care pathway.

Participants highlighted a range of needs for better support, including individual, familial, community, and system-level assistance. Firstly, financial aid is provided to those unable to work in traditional sectors, along with job opportunities for their children, emphasising the importance of self-sufficiency and empowerment. Similar findings have been reported in a Sri Lankan study, which demonstrated the effectiveness of providing direct financial support to affected families through the Sri Lankan Samurdhi poverty alleviation scheme, which offers allowances to designated low-income households [53]. Secondly, there is a call for community awareness programmes that utilise technology effectively, as well as for improved healthcare services, including mental health support and specialised care corners within hospitals. A study conducted in Nigeria also emphasised that a thorough understanding of transmission factors at the grassroots level would significantly enhance the effectiveness of LF control strategies [65]. In terms of well-being, utilising psychological peer support has been proven effective in India in mitigating stigma and improving mental well-being, and can be implemented in practice [66]. Moreover, study findings suggest that the parallel implementation of enhanced and post-elimination surveillance in hotspots and new areas is also crucial for effectively addressing the spread of filariasis. Additionally, a study from Malawi suggests that post-elimination efforts should be integrated with other national programmes and incorporated into routine health systems [28]. In light of these findings, future research should focus on evaluating the effectiveness of integrating these strategies and exploring innovative approaches to enhance community engagement and self-sufficiency in affected populations.

Programmatic implications of the findings

The present study suggests that concentrated efforts are necessary at both the community and policy levels to design interventions that alleviate morbidity and improve the well-being of individuals affected by LF (Table 3).

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Table 3. Programmatic implications of the findings.

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Limitations and strengths

While this study provided insights into the experience of people living with LF, the lack of an appropriate control group, either including healthy controls or people with other chronic debilitating diseases, may have reduced generalisability. This qualitative study was designed to explore the lived experiences of individuals affected by LF and related healthcare stakeholders in low-income settings. Therefore, we focused on gathering in-depth insights from the participants, which would have been difficult to achieve through quantitative analysis or comparative study [9]. We found that people affected with LF were highly stigmatised, and often subjected to discrimination based on their visible lesions or disabilities. Some aspects of their experience may be relevant but are unlikely to be easily applicable to people with other chronic debilitating diseases. Future large-scale studies focusing on quantitative data should be conducted to validate these findings and explore the social and health-care-seeking experiences of PWLF. Moreover, we intended to gather the lived experiences of LF-affected Bangladeshi individuals in this study, which was not presented in any other studies that may have introduced bias. Therefore, future studies should integrate objective measures or adopt a mixed-methods approach to gain a better understanding.

Additionally, the interviewed participants had been infected and affected by LF for many years, which increased the likelihood of recall bias. Additionally, participants’ responses from persons with LF may have been influenced by the stigma associated with the condition and societal expectations of acceptability, potentially leading to social desirability bias. This bias was controlled by ensuring anonymity and confidentiality. Regarding the dropout rate of 32 out of 52 participants, nonresponse bias may have been introduced due to systematic differences based on demographic characteristics, health status, or other relevant factors, if possible. Hence, to avoid inconsistency, the data were analysed by multiple researchers to compare interpretations.

Although we have interviewed different stakeholders who were national programme consultants of a local non-profit organisation, research consultants of DGHS, representatives of an international non-government organisation, and researchers, we were unable to include perspectives of informal care providers (traditional healers, Unani, or herbal medicine practitioners), which would provide further insights into care-seeking dynamics.

To the best of our knowledge, this study is the first to document the healthcare-seeking patterns and lived experiences of individuals affected by LF. These findings could contribute to the existing literature and support relevant stakeholders in advocating for, protecting, and promoting their rights to the government.

Conclusion

Bangladesh has eliminated LF as a public health problem [3]. To fulfil their SDG commitments to leaving no one behind through the attainment of Universal Health Coverage (UHC), services need to be accessible for those already affected. Considering that LF and other NTDs are most prevalent in poor populations, the success or failure of the UHC can be measured against the extent of its effectiveness in reaching persons with NTDs. Even after the elimination of LF, it is crucial to focus on mental health and overall well-being due to the long-term disabilities and chronic conditions associated with the disease, and such ongoing post-validation measures reduce the risk of undetected transmission, leading to a resurgence of infections to previous levels [67]. Integrating accessible support services is valuable for the health and well-being of those affected, but it can also be an essential measure in maintaining elimination successes [68].

Supporting information

Acknowledgments

The authors are grateful to all the participants who contributed to this study. The authors are also thankful to the National Filariasis Elimination Program (NFEP) of the Directorate General of Health Services (DGHS) under the Ministry of Health and Family Welfare (MoHFW) of Bangladesh for their support in project-related work.