A Qualitative Study of Knowledge, Experiences, and Healthcare Needs of People Living with Lymphedema in Kamwenge District, Rural Uganda

A Qualitative Study of Knowledge, Experiences, and Healthcare Needs of People Living with Lymphedema in Kamwenge District, Rural Uganda | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article A Qualitative Study of Knowledge, Experiences, and Healthcare Needs of People Living with Lymphedema in Kamwenge District, Rural Uganda Vicent Mwesigye, Joanita BerytahTebulwa, Benson Musinguzi, Bosco Bekita Agaba, and 10 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-7045452/v1 This work is licensed under a CC BY 4.0 License Status: Published Journal Publication published 27 Oct, 2025 Read the published version in Discover Public Health → Version 1 posted 13 You are reading this latest preprint version Abstract Background Lymphedema is a progressive, disabling condition caused by lymphatic system failure, yet it remains a neglected health issue, especially in low-resource settings. In rural Uganda’s Kamwenge District, affected individuals face not only chronic physical symptoms like swelling and pain but also considerable social and emotional challenges. Misunderstandings about the condition, culturally rooted stigma, and limited access to timely diagnosis and appropriate treatment further exacerbate the problem. Despite global efforts to address lymphedema within neglected tropical disease (NTD) programs, many affected communities remain marginalized and underserved. Beyond clinical symptoms, lymphedema disrupts livelihoods, education, family dynamics, and social participation. This study used a qualitative design to explore the lived experiences of lymphedema patients and caregivers in Kamwenge. It examined community knowledge, healthcare barriers, and cultural beliefs to identify locally relevant strategies for prevention, care, and stigma reduction. Methods A community-based qualitative study design was employed. Data were collected through five focus group discussions (FGDs) involving lymphedema patients and caregivers, and seven key informant interviews (KIIs) with local health officials, community leaders, and religious figures. Participants were purposively sampled from Rukunyu Hospital and surrounding communities to capture diverse perspectives. Data were transcribed, translated, and analysed using Braun and Clarke’s thematic analysis approach. Results Seven key themes emerged: (1) patients’ daily struggles with pain, dependence, and economic hardship; (2) stigma leading to social exclusion; (3) gaps in knowledge and culturally influenced misconceptions about causes and treatment; (4) gender-specific vulnerabilities such as abandonment and psychological distress; (5) weak healthcare infrastructure and limited access; (6) reliance on informal coping strategies including herbal remedies, faith, and peer support; and (7) institutional deficiencies alongside community-driven recommendations for improved care and prevention. Despite some health education efforts, misinformation and stigma remain widespread, and affected individuals are often excluded from social support programs. Conclusion Lymphedema in Kamwenge District is a complex issue intersecting health, social stigma, and systemic weaknesses. Urgent, community-focused interventions are critical to closing knowledge gaps, enhancing healthcare services, reducing stigma, and integrating lymphedema management into national health policies. Lymphedema Uganda qualitative research stigma rural health caregiving health systems neglected tropical diseases Background Lymphedema, a progressive and often disabling condition resulting from lymphatic system dysfunction, remains a severely under recognized health issue, particularly in low-resource settings[ 1 , 2 ]. In rural regions of Uganda such as Kamwenge District, individuals affected by this condition face not only physical challenges including chronic swelling and pain but also significant social and emotional burdens. Misconceptions about its causes, stigmatizing cultural beliefs, and inadequate access to timely diagnosis and appropriate care further compound the problem[ 3 , 4 ]. Despite global efforts to manage lymphedema as part of neglected tropical disease (NTD) control strategies, affected populations in many underserved areas remain marginalized and unsupported. The impact of lymphedema in such contexts goes beyond the clinical domain it disrupts livelihoods, family structures, education, and community participation[ 5 , 6 ]. This study employs a qualitative approach to explore the lived experiences of patients and caregivers in Kamwenge District. By examining community knowledge, healthcare challenges, and culturally rooted perceptions of lymphedema, the research aims to inform more responsive and locally grounded strategies for prevention, care, and stigma reduction. Methods Study design This was a community based qualitative study. Study Site The study was conducted at Rukunyu Hospital and its surrounding communities in Kamwenge District, a rural area in South Western Uganda. Study Population and Respondent Categories The study involved three primary categories of participants: Patients diagnosed with lymphedema, Caregivers of individuals living with lymphedema, Key stakeholders involved in local health governance and service provision, including health professionals, local leaders, and community health workers in in Kamwenge District. Each participant group contributed unique perspectives and information relevant to the study’s objectives as below. Study population Data ccollection method Type of information collected Patients with lymphedema Focus Group Discussions (FGDs) Knowledge and beliefs, lived experiences (positive and negative), social support, healthcare needs, recommendations for care, and views on prevention strategies Caregivers of patients Focus Group Discussions (FGDs) Observations and experiences in caregiving, perceptions of health system response, and suggestions for improved care and prevention Key stakeholders (DHO, CAO, health workers, local leaders, VHTs, religious leaders) Key Informant Interviews (KIIs) Institutional experiences in service delivery, system gaps, policy recommendations, and feasibility of prevention efforts Sampling and Recruitment A purposive sampling strategy was employed to recruit participants with direct experience of lymphedema either as patients, caregivers, or service providers. Recruitment was conducted in collaboration with health workers at Rukunyu Hospital and local leaders, ensuring the inclusion of diverse perspectives across gender, age, caregiving roles, and institutional levels. Sampling continued until data saturation was achieved within each respondent group. Data Collection Procedures Focus Group Discussions (FGDs) A total of five FGDs were conducted: Four with patients (two male-only and two female-only groups) and One with caregivers (mixed gender). Each group consisted of 6–10 participants. Discussions were facilitated in local languages by the principal investigator and a trained assistant, both culturally competent and experienced in qualitative research. Sessions lasted approximately 45–60 minutes, were audio-recorded (with consent), and held in safe, private venues. Informed consent was obtained prior to participation, and respondents received modest compensation for time and transport. Key Informant Interviews (KIIs) A total of seven KIIs were conducted with purposively selected stakeholders: District Health Officer (DHO), Health facility in-charges, Community health coordinator, Two Local Council leaders, Religious leader. KIIs were guided by a semi-structured interview guide, allowing flexibility to probe issues of institutional practice, stigma, prevention, and care delivery. Interviews were held in private locations and lasted 20–35 minutes. All participants provided informed consent, and interviews were audio-recorded. Ethical protocols related to privacy, confidentiality, and voluntariness were strictly observed. Data Analysis Data were analysed using thematic analysis, following Braun and Clarke’s six-step framework[ 7 ]; Familiarization with the data, Generation of initial codes, searching for themes, reviewing themes, Defining and naming themes, Producing the report. Both deductive coding (based on research objectives and existing literature) and inductive coding (emerging from participant narratives) were used to ensure a robust and grounded analysis. Transcripts were manually coded using Microsoft Word, and a collaboratively developed codebook guided the process. Coding was performed by multiple researchers, and discrepancies were resolved through discussion to enhance inter-coder reliability. Themes were then compared within and across groups (patients, caregivers, and key stakeholders) to capture both shared and divergent experiences. Representative quotes were selected to illustrate themes, with all identifiers anonymized for confidentiality. Results Data were derived from five focus group discussions (FGDs) involving both patients and caregivers, as well as seven key informant interviews (KIIs) with relevant stakeholders, including district and facility-level health professionals and community leaders. Thematic analysis was conducted using both inductive and deductive coding, guided by a pre-established codebook based on the study objectives and relevant literature. Seven themes and sub-themes emerged from the data, capturing both the individual and structural dimensions of living with lymphedema. These themes are: (1) Lived realities of lymphedema; (2) Stigma, rejection, and social death; (3) Knowledge gaps and cultural beliefs; (4) Gendered vulnerabilities and abandonment; (5) Fragile healthcare and access barriers; (6) Coping mechanisms and informal care; and (7) Institutional gaps and recommendations. Each theme is discussed in detail with illustrative quotes from both patients and caregivers (FGDs) and community or institutional stakeholders (KIIs), using anonymized identifiers to preserve confidentiality. THEME 1: LIVED REALITIES OF LYMPHEDEMA PATIENTS The lived experience of individuals affected by lymphedema in Kamwenge district is marked by physical suffering, emotional exhaustion, and significant disruptions to everyday life. Participants shared vivid accounts of how the disease has reshaped their bodies, routines, and social participation. Several sub-themes emerged that illustrate the depth of this disruption. 1.1 Chronic pain and swelling of limbs Most participants described ongoing physical pain and persistent swelling of limbs as central features of living with lymphedema. These symptoms were not episodic but constant, with individuals enduring both daytime discomfort and sleepless nights. “Sometimes I sleep for two hours from the pain, then I am taken to hospital, given medication that helps for a moment, but then it comes back.” (FGD-03, Female Patient) “The legs swell, and even when you rest, the pain continues like fire is burning in the legs.” (FGD-01, Female Patient) 1.2 Loss of mobility and economic productivity Swelling and pain frequently translated into loss of mobility, forcing many patients to abandon work in farming and other income-generating activities. In a community dependent on manual labor, this led to heightened vulnerability and dependency on others for survival. “I used to dig for people, but now even walking a short distance is hard. I just sit and wait for someone to bring food.” (FGD-05, Female Patient) “Even if food and firewood are there, I might not be able to cook… I walk holding walls because of the pain.” (FGD-01, Female Patient) 1.3 Interrupted education and early withdrawal from school Participants shared how the onset of lymphedema during childhood or adolescence disrupted education. Girls, in particular, were withdrawn from school early, either due to stigma or physical incapacity. “I stopped going to school in P.4 because of this disease.” (FGD-05, Female Patient) “The pain made me miss school for days, then my parents said I should just stay home.” (FGD-03, Female Patient) “Poverty has increased and even my children are no longer going to school because of lack of school fees… if the person was doing something in the community, they stop… so you’re affected whether sick or not.” (FGD-06, Caregiver) 1.4 Prolonged dependency and fatigue With loss of income and physical function, many patients described feeling like a burden to their families. Some recounted being emotionally and materially dependent on caregivers, which induced guilt and frustration. “If you don’t dig, won’t you die of hunger? That’s it… people leave you when you fall sick.” (FGD-01, Female Patient) “I hate that I can’t help my children anymore. They now take care of me instead.” (FGD-03, Female Patient) “I fetch water, cook, wash for my wife, and also dig. It is not easy but I can’t leave her.” (FGD-06, Caregiver) THEME 2: STIGMA, REJECTION, AND SOCIAL DEATH Lymphedema in Kamwenge is not only a physical condition, it carries a deep social cost. Participants described how their identity, dignity, and relationships have been eroded by widespread stigma. The disease attracts mockery, distancing, and social death often turning those affected into objects of pity or rejection. The following sub-themes illustrate the breadth and impact of this experience. 2.1 Labelling, mockery, and social avoidance Across all groups, participants recounted how lymphedema subjects them to demeaning labels and public ridicule. Nicknames such as "woman of boils," "ekyinugwa" (outcast), and "the one with swollen legs" were common. These labels are not only dehumanizing but reinforce isolation. “When we go to church, they sit far from us.” (FGD-01, Female Patient) “We are treated like animals, like we brought the disease to ourselves.” (FGD-02, Male Patient) “We are insulted — people shout on the road: ‘eh, he is carrying the woman with swollen legs.’ Even our children at school are nicknamed ‘child of big leg.’” (FGD-06, Caregiver) A male stakeholder also acknowledged the existence of this mockery from within the community: “People fear them, others laugh and call them names. That’s why some patients stop coming to public events.” (KII-04, Local Council 1 Chairperson I) 2.2 Marital rejection and intimate abandonment Many women reported being abandoned by husbands or partners who considered the disease a sign of bad luck or curse. This abandonment led to emotional trauma, economic vulnerability, and disruption of family stability. “My husband left me, saying it was bad luck to marry a woman of lymphedema.” (FGD-05, Female Patient) “Even your husband says you are the cursed one with big legs.” (FGD-03, Female Patient) Men, too, shared relational rejection and social withdrawal: “You become unwanted. Even women look at you like you are finished.” (FGD-04, Male Patient) 2.3 Stigma extending to children and family The stigma is not limited to the affected individual. Several participants explained how their children are also mocked or isolated because of their parent’s condition a form of intergenerational stigma. “Even village children call my kids ‘gwa nyoko negyo mirumo’ meaning your mother is the one with the disease.” (FGD-03, Female Patient) “My child was chased from school by other pupils who said she will also swell.” (FGD-06, Male Caregiver) 2.4 Internalized shame and emotional distress Over time, repeated exclusion leads to internalized stigma feelings of self-disgust, loss of self-worth, and emotional fatigue. Both men and women spoke about retreating from society and struggling with shame. “I started hating myself after I dropped out of school and people avoided me.” (FGD-05, Female Patient) “You don’t want to be seen. You cover your legs, you stay home, even family members treat you like a burden.” (FGD-02, Male Patient) “Even the patient is left by the wife or husband. Then they hate themselves more.” (FGD-06, Caregiver) A local leader affirmed how internalized stigma worsens patients’ mental state: “Some stay in hiding. They no longer believe they can contribute to society.” (KII-05, Local Council I Chairperson) THEME 3: KNOWLEDGE GAPS AND CULTURAL BELIEFS Although some participants had heard of lymphedema or received health education, Misunderstanding and misconceptions persist. Uncertainty about the disease’s cause, compounded by cultural interpretations and limited communication from health providers, has shaped how patients and communities respond. This theme is presented through three key sub-themes. 3.1 Misunderstanding about the cause of the disease Patients shared mixed messages received from health workers, community members, and their own experiences. Some associated the disease with infections, others with soil, while a few connected it to animal contact, hygiene and even witchcraft. “Doctors said it’s syphilis. Others say it's in the soil. Others say I stepped in pig dung.” (FGD-03, Female Patient) “We were told it's in the soil, but we’re still not sure. We walk there every day; some people don’t get it.” (FGD-01, Female Patient) This uncertainty is also recognized by health officials: “We’ve done many sensitizations, but people still confuse it with sexually transmitted diseases. They ask, ‘Why me and not others?’” (KII-01, District Health Official) 3.2 Beliefs in witchcraft and spiritual causes Traditional explanations continue to shape perceptions and influence care-seeking behavior. Some respondents referred to community narratives that blamed spiritual causes or ancestral curses. “Some say we are bewitched… they tell us to go to the witch doctor.” (FGD-05, Female Patient) “People told me it’s a family curse. That’s why they don’t want to marry me.” (FGD-04, Male Patient) A key informant confirmed the persistence of these beliefs: “They still seek help from traditional healers first. They think it’s a curse, not a medical condition.” (KII-03, Community Health Coordinator, Elephantiasis Initiative) 3.3 Limited access to reliable information Many participants expressed frustration at receiving unclear or inconsistent information from health facilities. Despite multiple visits or tests, their condition remained unexplained, leaving them confused and mistrustful. “I have tested many times. They say nothing is wrong with me, but look at my legs!” (FGD-01, Female Patient) “No one tells us what it is. We just take Panadol and go home.” (FGD-02, Male Patient) This was echoed by a health worker: “We lack diagnostic tools and consistent information. Patients leave confused, thinking it’s something else.” (KII-02, Health Facility In-charge) THEME 4: GENDERED VULNERABILITIES AND ABANDONMENT Lymphedema not only affects physical health but disrupts intimate relationships, family dynamics, and gender roles. Women were particularly vulnerable to abandonment and social isolation, while both genders faced expectations that clashed with their new limitations. The theme is elaborated across three sub-themes. 4.1 Women abandoned by partners A striking number of female participants shared that they had been left by their husbands or partners after the onset of lymphedema. These women often became sole caregivers for their children, grappling with physical limitations and emotional distress. “My husband left me, saying I brought bad luck. Since then, I raise the children alone.” (FGD-05, Female Patient) “I was chased away because of my swollen legs. They said I am not fit to be a wife.” (FGD-03, Female Patient) Community leaders recognized this trend: “Some men just abandon the woman when the swelling comes. They don’t want to be associated with that shame.” (KII-05, Local Council I Chairperson I) 4.2 Emotional toll on male patients Male patients also experienced emotional pain due to stigma and disrupted masculine identity. Some reported feeling “less of a man,” as the disease made it difficult to fulfill provider roles or maintain romantic relationships. “I can’t marry now. Who will accept a man who can’t dig or walk properly?” (FGD-04, Male Patient) “Even women fear us. They look at our feet and turn away. You lose your respect as a man.” (FGD-02, Male Patient) “When your wife has it, people say you are foolish to stay. But I stayed because someone must care for her.” (FGD-06, Caregiver) 4.3 Shifting gender roles and household strain In some cases, caregiving responsibilities shifted in ways that strained household dynamics. Women cared for affected male relatives, while children were forced to grow up quickly to support sick parents. “I now rely on my daughter to cook and wash me. She’s only 13. It hurts me.” (FGD-01, Female Patient) “When I’m down, my wife does everything: farming, feeding me, taking care of the kids.” (FGD-04, Male Patient) “Men rarely stay. They run away. I stayed because I feared God. Others call me foolish.” (FGD-06, Male Caregiver) THEME 5: FRAGILE HEALTHCARE AND ACCESS BARRIERS Participants repeatedly emphasized the limitations of local healthcare systems in addressing lymphedema. Even when services were available, patients encountered a web of challenges, including dismissive health worker attitudes, lack of essential drugs, transport difficulties, and overwhelming facility congestion. This theme is structured across three core sub-themes. 5.1 Inadequate care and referral systems Patients often felt they were not given proper care at health facilities. Some were sent home without treatment, while others received only symptomatic relief. There was a strong sense that health workers lacked training or motivation to treat lymphedema seriously. “We go to the hospital, they give you Panadol and tell you to go. No one explains what you really have.” (FGD-02, Male Patient) “They remove our books from the line and work on others first. You feel you are not wanted there.” (FGD-01, Female Patient) “There is no one who checks on us like HIV patients. The legs bleed, and still no one comes.” (FGD-06, Caregiver) Health professionals acknowledged limitations: “We lack diagnostic tools and guidelines. Most of our health workers have never been trained in managing this disease.” (KII-02, Health Facility In-charge) 5.2 Financial and transport barriers The burden of seeking care was often unaffordable for many patients. Long distances to facilities, lack of transport, and the need to purchase medication out-of-pocket created many barriers, especially in rural sub-counties. “We walk many kilometers with painful legs because there is no money for a boda.” (FGD-05, Female Patient) “You reach the hospital and they tell you to buy the medicine. If you have no money, you go back home and wait.” (FGD-04, Male Patient) “When I take the patient to the hospital and they write a prescription I can’t afford, I just bring them back home.” (FGD-06, Caregiver) “If the patient is pregnant, she walks long distances with no special attention some even swell in their private parts.” (FGD-06, Caregiver) A key informant confirmed the problem: “Most facilities can’t stock these medicines, and patients can't afford regular transport to health centers.” (KII-03, Community Health Coordinator, Elephantiasis Initiative) 5.3 Facility overload and health worker attitudes Participants described overcrowded health centers and feeling disrespected or ignored by health workers. Some felt that their condition was seen as a nuisance rather than a legitimate health concern. “They treat us like we are wasting their time. Some health workers look at our legs with disgust.” (FGD-03, Female Patient) “You arrive early but are worked on last. Even talking to the nurse feels like begging.” (FGD-01, Female Patient) THEME 6: COPING MECHANISMS AND INFORMAL CARE Faced with persistent pain, stigma, and inadequate formal healthcare, many individuals have developed personal and communal strategies to cope with the burden of lymphedema. These strategies are rooted in tradition, faith, and survival, often compensating for the health system’s failures. Three sub-themes emerged prominently. 6.1 Use of herbs and traditional remedies In the absence of effective or accessible biomedical care, many patients turn to herbal treatments, including boiling local plants or bathing in ash. Remedies like omufurura were widely cited. “What helps me is omufurura. I dry them and drink it like tea, and the pain reduces.” (FGD-01, Female Patient) “We apply ash and smear the legs. Sometimes it works for a few days.” (FGD-02, Male Patient) A local leader validated this pattern: “People use what is available herbs, local oil, even prayers because the hospital doesn’t help much.” (KII-04, Local Council Chairperson I) 6.2 Faith, prayer, and spiritual resilience Faith-based coping emerged as a dominant strategy, particularly among women. Many participants cited prayer and trust in God as a major source of strength, especially when medical hope had faded. “I thank Jesus. When I feel like giving up, I pray and I feel stronger.” (FGD-01, Female Patient) “Church helps me not to cry all the time. They pray for me and sometimes give soap.” (FGD-03, Female Patient) 6.3 Peer support and self-care routines Patients also found comfort and practical support in one another. Shared experiences fostered peer bonds, and some developed personal routines for managing symptoms such as soaking feet, resting during the day, and eating certain foods. “We share advice. One told me to always wash with warm water and salt. It helps me.” (FGD-02, Male Patient) “When I meet someone with the same disease, I don’t feel so alone anymore.” (FGD-04, Male Patient) “We soak their legs in salt and water, wash them with the soap an NGO once gave us… but we have no gloves or protection.” (FGD-06, Caregiver) “We have taught our children how to care for their parent when we are away. Even the small ones help with water or cooking.” (FGD-06, Caregiver) THEME 7: INSTITUTIONAL GAPS AND RECOMMENDATIONS While community members have crafted their own coping mechanisms, many feel let down by formal institutions. Government and Non-Governmental Organisation promises have often gone unfulfilled, and affected individuals remain excluded from most social protection programs. Still, there is a growing chorus of practical recommendations from the community itself. This theme is structured around three sub-themes. 7.1 Broken promises and short-lived support Many participants recalled past efforts like soap distributions or NGO visits but emphasized that these were inconsistent or abandoned without explanation hence causing disappointment. “They gave us basins and soap once and never came back. We don’t even know who they were.” (FGD-01, Female Patient) “People came saying they would help. We signed things, but nothing happened.” (FGD-04, Male Patient) One stakeholder confirmed this frustration: “There have been short bursts of support like boots, salt, oils but no follow-up or system. It ends as quickly as it starts.” (KII-03, Community Health Coordinator, Elephantiasis Initiative) 7.2 Exclusion from social protection and health programs Despite their vulnerability, people living with lymphedema are not explicitly included in disability or social support schemes. Many feel “invisible” to both health systems and local government structures. “We are not considered disabled, but we cannot work or move well. Who will help us?” (FGD-05, Female Patient) “Even when they register people for help, our names are not called.” (FGD-02, Male Patient) “We are not registered for any program. No one includes us in government things like PDM. Even at the hospital, they know the disease but do nothing.” (FGD-06, Caregiver) A district-level official echoed these concerns: “They are not captured under disability programming or targeted support, so they fall through the cracks.” (KII-01, District Health Official) 7.3 Community-driven recommendations Despite frustrations, participants had clear and actionable ideas for improving the situation. These included distribution of protective footwear, training of local health workers, consistent follow-up, and sensitization campaigns to reduce stigma. “Let them teach us and also give gumboots. Even that alone can prevent the disease.” (FGD-03, Female Patient) “We need people to come regularly, not just one time. If we are followed up, we will not give up.” (FGD-02, Male Patient) “They never ask caregivers what we go through. We are also tired and need support.” (FGD-06, Caregiver) “If community members could visit and help each other bring a bandage, share advice, not isolate us that would restore dignity.” (FGD-06, Caregiver) Leaders also emphasized the need for consistent community engagement: “We are ready to mobilize people, but we need tools and follow-through. Don’t just assess, act.” (KII-05, Local Council Chairperson I) "So my thinking and prayer is that this continued engagement with you... should quickly guide the intervention... We are trying to ensure we increase access to water, and basically information." (KII-07, District Health Official) "What should be done... the sub-county, district and the country should consider them in their budget then they put for them help..." (KII-03, Community Health Coordinator, Elephantiasis Initiative) Discussion This study provides an in-depth exploration of the lived experiences, beliefs, and healthcare challenges surrounding lymphedema in Kamwenge District, Uganda. Through qualitative insights from affected individuals, caregivers, and community stakeholders, lymphedema emerges as a complex, multidimensional health burden that intersects with poverty, gender inequity, and health system limitations[ 1 , 8 ]. The findings show that the disease's physical symptoms chronic pain, swelling, and immobility are only part of a wider burden[ 9 ]. Affected individuals also face profound emotional distress, loss of economic independence, and social alienation, including stigma so severe that it leads to what some described as “social death” [ 10 ].These experiences are deeply shaped by local beliefs, misinformation, and systemic neglect. Cultural explanations of lymphedema ranging from spiritual curses to sexually transmitted infections complicate timely care-seeking and deepen stigma[ 11 ]. Gender emerged as a powerful axis of vulnerability. Women, in particular, were frequently abandoned by partners and left to manage both their illness and childrearing alone[ 12 ]. Meanwhile, male patients described diminished self-worth and identity crises due to loss of productivity and rejection. Caregivers mostly family members also bore a heavy burden, often without institutional or emotional support[ 10 ]. Health system limitations were clearly articulated by both patients and providers. There is a lack of diagnostic tools, trained personnel, treatment protocols, and follow-up mechanisms[ 13 ]. Patients often reported being dismissed or given only symptomatic relief, while providers acknowledged feeling unequipped to respond. Financial and geographic barriers further compound access to care, especially in remote rural areas[ 14 ]. Despite these challenges, communities have developed informal coping mechanisms: from herbal remedies to mutual caregiving networks and spiritual support systems[ 15 ]. These grassroots adaptations demonstrate resilience and highlight the urgent need for structured support to amplify rather than replace them. Importantly, participants offered clear recommendations: routine follow-up by health workers, provision of protective supplies (for example footwear and soap), community education to combat stigma, and formal inclusion in disability and social protection programs. These community-driven proposals underscore a strong willingness to collaborate in future intervention design and implementation[ 16 ]. Limitations This study captured a single point in time, limiting its ability to reflect how knowledge, behaviours, or healthcare practices may evolve over time due to its cross sectional nature design. Conclusion Lymphedema in Kamwenge District is far more than a neglected tropical disease, it is a deeply entrenched social, economic, and gendered issue. The findings from this study reveal how affected individuals live at the intersection of chronic illness, poverty, stigma, and systemic healthcare neglect. The community’s resilience is evident in the informal strategies developed to cope with this burden, yet these strategies are not a substitute for structured, sustained intervention. To address this multifaceted challenge, future efforts must go beyond clinical management. They must integrate community education, health system strengthening, and gender-sensitive support programs. Urgent policy attention is needed to include lymphedema in national disability, social protection, and neglected disease frameworks. Listening to those most affected, and acting on their recommendations, is not only ethically imperative it is essential for sustainable and responsive public health action. Abbreviations LF: Lymphatic Filariasis KIIs: Key informant Interviews FGDs: Focus group Discussions MUST: Mbarara University of science and Technology. VHTs: Village Health Teams. NGO: Non-Governmental Organisation Declarations Ethical approval. This study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. Ethical approval was obtained from the Mbarara University Research Ethics Committee (MUST-2024-1711) and the Uganda National Council for Science and Technology (HS5335ES). Additional authorization was granted by the Kamwenge District Health Officer and the Medical Director of Rukunyu Hospital. Written informed consent was obtained from all participants prior to data collection. All research activities adhered to established national and institutional ethical guidelines and regulatory standards. Participants identified with infections during the study were referred to qualified healthcare providers for appropriate medical treatment. As this was not a clinical trial, a clinical trial registration number is not applicable. Consent to participate. Informed written consent was secured from all participants before data collection began. Each participant received comprehensive information regarding the study’s objectives, their rights, and the voluntary nature of their involvement. They were assured of their right to withdraw from the study at any point without facing any negative consequences. Participants found to have infections during the course of the study were referred to qualified healthcare professionals for appropriate medical care. Consent for Publication Not applicable. Availability of data and materials. The data supporting the findings of this study are available from the corresponding author upon reasonable request. Competing interests. The authors declare that they have no competing interests. Funding The authors received no external funding or financial support for the conduct of this study. Authors' contributions. MV, FB, HI, and EMM conceptualized the study and defined the research objectives. MV, CB, BM, and JTB were responsible for developing the study methodology and drafting the research protocol. Data cleaning was performed by MV, CB, RM, and BM. Data collection was carried out by MV, HI, BM, and GKA, while data analysis was conducted by CB, CNB and MV. MV, BM, and TJB prepared the initial manuscript draft. HZ, JB, BBA, and FB contributed to reviewing and refining the first draft, with EMM, FB, and HI providing further editorial input, oversight, and supervision of the overall research process. Acknowledgements. We extend our heartfelt gratitude to Dr. William Mucunguzi, the District Health Officer, and Dr. Ivan Mujuni, Medical Director of Rukunyu Hospital, for their invaluable support throughout the course of this study. We also thank Mr. Beyanga Evarist, Mr. Atayebwa Solomon, and the Village Health Team (VHT) members, and Ms Ninsiima Elizabeth for their coordination and assistance during the data collection process. Additionally, we thank Uganda Research Student Support Fund for the support given, and gratitude goes to the staff of the Rukunyu Hospital Laboratory Department for their contributions to sample collection and analysis. References V. Mwesigye, D. Atwine, E. F. Munguciada, A. Tillema, J. B. Tebulwa, B. B. Agaba , et al. , "Global Preventive and Management Strategies and Their Effectiveness in Patients With Secondary Lymphedema: A Scoping Review," Cureus, vol. 17, p. e83627, 2025. R. Elia and M. Maruccia, "Lymphedema and Wound Care," in Pearls and Pitfalls in Skin Ulcer Management , ed: Springer, 2024, pp. 649-660. T. Grantham-Price, "Exploring the Landscape of Lymphedema Advocacy and Policy Advancement: An Explanatory Sequential Mixed Methods Study on Provider Engagement and Perceptions," The University of Mississippi Medical Center, 2024. E. Torgbenu, T. Luckett, M. Buhagiar, C. M. Requena, and J. L. Phillips, "Improving care for cancer-related and other forms of lymphoedema in low-and middle-income countries: a qualitative study," BMC health services research, vol. 22, p. 461, 2022. N. Sun and J. J. Amon, "Addressing inequity: neglected tropical diseases and human rights," Health and human rights, vol. 20, p. 11, 2018. L. C. Dean, Narratives of neglect: privileging the priorities of affected persons to support health systems strengthening and the development of equitable people-centered responses to neglected tropical diseases in Liberia : The University of Liverpool (United Kingdom), 2019. V. Braun and V. Clarke, "Using thematic analysis in psychology," Qualitative research in psychology, vol. 3, pp. 77-101, 2006. O. Mitjà, M. Marks, L. Bertran, K. Kollie, D. Argaw, A. H. Fahal , et al. , "Integrated control and management of neglected tropical skin diseases," PLoS neglected tropical diseases, vol. 11, p. e0005136, 2017. A. A. Grada and T. J. Phillips, "Lymphedema: Pathophysiology and clinical manifestations," Journal of the American Academy of Dermatology, vol. 77, pp. 1009-1020, 2017. B. Person, L. K. Bartholomew, M. Gyapong, D. G. Addiss, and B. van den Borne, "Health-related stigma among women with lymphatic filariasis from the Dominican Republic and Ghana," Social Science & Medicine, vol. 68, pp. 30-38, 2009. K. Ozano, L. Dean, M. Yoshimura, E. MacPherson, N. Linou, M. Otmani del Barrio , et al. , "A call to action for universal health coverage: Why we need to address gender inequities in the neglected tropical diseases community," PLoS neglected tropical diseases, vol. 14, p. e0007786, 2020. E. Stillwaggon, L. Sawers, J. Rout, D. Addiss, and L. Fox, "Economic costs and benefits of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India," The American journal of tropical medicine and hygiene, vol. 95, p. 877, 2016. W. H. Organization, "Lymphatic filariasis: managing morbidity and preventing disability: an aide-mémoire for national programme managers: web annex A: protocol for evaluating minimum package of care of morbidity management and disability prevention for lymphoedema management in designated health facilities," in Lymphatic filariasis: managing morbidity and preventing disability: an aide-mémoire for national programme managers, second edition: web annex A: protocol for evaluating minimum package of care of morbidity management and disability prevention for lymphoedema management in designated health facilities , ed, 2021. D. H. Molyneux, L. Savioli, and D. Engels, "Neglected tropical diseases: progress towards addressing the chronic pandemic," The Lancet, vol. 389, pp. 312-325, 2017. H. Rilkoff, E. M. Tukahebwa, F. M. Fleming, J. Leslie, and D. C. Cole, "Exploring gender dimensions of treatment programmes for neglected tropical diseases in Uganda," PLoS neglected tropical diseases, vol. 7, p. e2312, 2013. N. T. Chandrasena, R. Premaratna, C. H. Mallawarachchi, D. G. Gunaratna, and N. R. de, "Lymphatic filariasis in the Southeast Asian region; status and control options," CABI Reviews, 2020. Additional Declarations No competing interests reported. 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Technology","correspondingAuthor":false,"prefix":"","firstName":"Edgar","middleName":"Mugema","lastName":"Mulogo","suffix":""}],"badges":[],"createdAt":"2025-07-04 09:53:36","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-7045452/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-7045452/v1","draftVersion":[],"editorialEvents":[{"content":"https://doi.org/10.1186/s12982-025-01043-1","type":"published","date":"2025-10-27T15:58:26+00:00"}],"editorialNote":"","failedWorkflow":false,"files":[{"id":95040038,"identity":"5bddff90-02e8-4b43-a792-36cce2a81826","added_by":"auto","created_at":"2025-11-03 16:07:47","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":789794,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-7045452/v1/517b3117-866e-4757-9e41-ede06a50644e.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"A Qualitative Study of Knowledge, Experiences, and Healthcare Needs of People Living with Lymphedema in Kamwenge District, Rural Uganda","fulltext":[{"header":"Background","content":"\u003cp\u003eLymphedema, a progressive and often disabling condition resulting from lymphatic system dysfunction, remains a severely under recognized health issue, particularly in low-resource settings[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e]. In rural regions of Uganda such as Kamwenge District, individuals affected by this condition face not only physical challenges including chronic swelling and pain but also significant social and emotional burdens. Misconceptions about its causes, stigmatizing cultural beliefs, and inadequate access to timely diagnosis and appropriate care further compound the problem[\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e, \u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eDespite global efforts to manage lymphedema as part of neglected tropical disease (NTD) control strategies, affected populations in many underserved areas remain marginalized and unsupported. The impact of lymphedema in such contexts goes beyond the clinical domain it disrupts livelihoods, family structures, education, and community participation[\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e, \u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eThis study employs a qualitative approach to explore the lived experiences of patients and caregivers in Kamwenge District. By examining community knowledge, healthcare challenges, and culturally rooted perceptions of lymphedema, the research aims to inform more responsive and locally grounded strategies for prevention, care, and stigma reduction.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003e\u003cstrong\u003eStudy design\u003c/strong\u003e\u003c/p\u003e\u003cp\u003eThis was a community based qualitative study.\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eStudy Site\u003c/strong\u003e\u003c/p\u003e\u003cp\u003eThe study was conducted at Rukunyu Hospital and its surrounding communities in Kamwenge District, a rural area in South Western Uganda.\u003c/p\u003e\u003cp\u003e\u003cb\u003eStudy Population and Respondent Categories\u003c/b\u003e\u003c/p\u003e\u003cp\u003eThe study involved three primary categories of participants: Patients diagnosed with lymphedema, Caregivers of individuals living with lymphedema, Key stakeholders involved in local health governance and service provision, including health professionals, local leaders, and community health workers in in Kamwenge District. Each participant group contributed unique perspectives and information relevant to the study’s objectives as below.\u003c/p\u003e\u003cdiv class=\"gridtable\"\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e\u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e\u003ctable float=\"No\" id=\"Taba\" border=\"1\"\u003e\u003ccolgroup cols=\"3\"\u003e\u003c/colgroup\u003e\u003cthead\u003e\u003ctr\u003e\u003cth align=\"left\" colname=\"c1\"\u003e\u003cp\u003eStudy population\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c2\"\u003e\u003cp\u003eData ccollection method\u003c/p\u003e\u003c/th\u003e\u003cth align=\"left\" colname=\"c3\"\u003e\u003cp\u003eType of information collected\u003c/p\u003e\u003c/th\u003e\u003c/tr\u003e\u003c/thead\u003e\u003ctbody\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003ePatients with lymphedema\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFocus Group Discussions (FGDs)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eKnowledge and beliefs, lived experiences (positive and negative), social support, healthcare needs, recommendations for care, and views on prevention strategies\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eCaregivers of patients\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eFocus Group Discussions (FGDs)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eObservations and experiences in caregiving, perceptions of health system response, and suggestions for improved care and prevention\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003ctr\u003e\u003ctd align=\"left\" colname=\"c1\"\u003e\u003cp\u003eKey stakeholders (DHO, CAO, health workers, local leaders, VHTs, religious leaders)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c2\"\u003e\u003cp\u003eKey Informant Interviews (KIIs)\u003c/p\u003e\u003c/td\u003e\u003ctd align=\"left\" colname=\"c3\"\u003e\u003cp\u003eInstitutional experiences in service delivery, system gaps, policy recommendations, and feasibility of prevention efforts\u003c/p\u003e\u003c/td\u003e\u003c/tr\u003e\u003c/tbody\u003e\u003c/table\u003e\u003c/div\u003e\u003cp\u003e\u003cb\u003eSampling and Recruitment\u003c/b\u003e\u003c/p\u003e\u003cp\u003eA purposive sampling strategy was employed to recruit participants with direct experience of lymphedema either as patients, caregivers, or service providers. Recruitment was conducted in collaboration with health workers at Rukunyu Hospital and local leaders, ensuring the inclusion of diverse perspectives across gender, age, caregiving roles, and institutional levels. Sampling continued until data saturation was achieved within each respondent group.\u003c/p\u003e\u003cp\u003e\u003cb\u003eData Collection Procedures\u003c/b\u003e\u003c/p\u003e\u003cp\u003e\u003cb\u003eFocus Group Discussions (FGDs)\u003c/b\u003e\u003c/p\u003e\u003cp\u003eA total of five FGDs were conducted: Four with patients (two male-only and two female-only groups) and One with caregivers (mixed gender).\u003c/p\u003e\u003cp\u003eEach group consisted of 6–10 participants. Discussions were facilitated in local languages by the principal investigator and a trained assistant, both culturally competent and experienced in qualitative research. Sessions lasted approximately 45–60 minutes, were audio-recorded (with consent), and held in safe, private venues. Informed consent was obtained prior to participation, and respondents received modest compensation for time and transport.\u003c/p\u003e\u003cp\u003e\u003cb\u003eKey Informant Interviews (KIIs)\u003c/b\u003e\u003c/p\u003e\u003cp\u003eA total of seven KIIs were conducted with purposively selected stakeholders: District Health Officer (DHO), Health facility in-charges, Community health coordinator, Two Local Council leaders, Religious leader.\u003c/p\u003e\u003cp\u003eKIIs were guided by a semi-structured interview guide, allowing flexibility to probe issues of institutional practice, stigma, prevention, and care delivery. Interviews were held in private locations and lasted 20–35 minutes.\u003c/p\u003e\u003cp\u003eAll participants provided informed consent, and interviews were audio-recorded. Ethical protocols related to privacy, confidentiality, and voluntariness were strictly observed.\u003c/p\u003e\u003ch2\u003eData Analysis\u003c/h2\u003e\u003cp\u003eData were analysed using thematic analysis, following Braun and Clarke’s six-step framework[\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e]; Familiarization with the data, Generation of initial codes, searching for themes, reviewing themes, Defining and naming themes, Producing the report.\u003c/p\u003e\u003cp\u003eBoth deductive coding (based on research objectives and existing literature) and inductive coding (emerging from participant narratives) were used to ensure a robust and grounded analysis. Transcripts were manually coded using Microsoft Word, and a collaboratively developed codebook guided the process. Coding was performed by multiple researchers, and discrepancies were resolved through discussion to enhance inter-coder reliability.\u003c/p\u003e\u003cp\u003eThemes were then compared within and across groups (patients, caregivers, and key stakeholders) to capture both shared and divergent experiences. Representative quotes were selected to illustrate themes, with all identifiers anonymized for confidentiality.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eData were derived from five focus group discussions (FGDs) involving both patients and caregivers, as well as seven key informant interviews (KIIs) with relevant stakeholders, including district and facility-level health professionals and community leaders. Thematic analysis was conducted using both inductive and deductive coding, guided by a pre-established codebook based on the study objectives and relevant literature.\u003c/p\u003e\n\u003cp\u003eSeven themes and sub-themes emerged from the data, capturing both the individual and structural dimensions of living with lymphedema. These themes are: (1) Lived realities of lymphedema; (2) Stigma, rejection, and social death; (3) Knowledge gaps and cultural beliefs; (4) Gendered vulnerabilities and abandonment; (5) Fragile healthcare and access barriers; (6) Coping mechanisms and informal care; and (7) Institutional gaps and recommendations. Each theme is discussed in detail with illustrative quotes from both patients and caregivers (FGDs) and community or institutional stakeholders (KIIs), using anonymized identifiers to preserve confidentiality.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTHEME 1: LIVED REALITIES OF LYMPHEDEMA PATIENTS\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe lived experience of individuals affected by lymphedema in Kamwenge district is marked by physical suffering, emotional exhaustion, and significant disruptions to everyday life. Participants shared vivid accounts of how the disease has reshaped their bodies, routines, and social participation. Several sub-themes emerged that illustrate the depth of this disruption.\u003c/p\u003e\n\u003cp\u003e1.1 Chronic pain and swelling of limbs\u003c/p\u003e\n\u003cp\u003eMost participants described ongoing physical pain and persistent swelling of limbs as central features of living with lymphedema. These symptoms were not episodic but constant, with individuals enduring both daytime discomfort and sleepless nights.\u003c/p\u003e\n\u003cp\u003e“Sometimes I sleep for two hours from the pain, then I am taken to hospital, given medication that helps for a moment, but then it comes back.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e“The legs swell, and even when you rest, the pain continues like fire is burning in the legs.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e1.2 Loss of mobility and economic productivity\u003c/p\u003e\n\u003cp\u003eSwelling and pain frequently translated into loss of mobility, forcing many patients to abandon work in farming and other income-generating activities. In a community dependent on manual labor, this led to heightened vulnerability and dependency on others for survival.\u003c/p\u003e\n\u003cp\u003e“I used to dig for people, but now even walking a short distance is hard. I just sit and wait for someone to bring food.”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“Even if food and firewood are there, I might not be able to cook… I walk holding walls because of the pain.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e1.3 Interrupted education and early withdrawal from school\u003c/p\u003e\n\u003cp\u003eParticipants shared how the onset of lymphedema during childhood or adolescence disrupted education. Girls, in particular, were withdrawn from school early, either due to stigma or physical incapacity.\u003c/p\u003e\n\u003cp\u003e“I stopped going to school in P.4 because of this disease.”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“The pain made me miss school for days, then my parents said I should just stay home.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e“Poverty has increased and even my children are no longer going to school because of lack of school fees… if the person was doing something in the community, they stop… so you’re affected whether sick or not.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003e1.4 Prolonged dependency and fatigue\u003c/p\u003e\n\u003cp\u003eWith loss of income and physical function, many patients described feeling like a burden to their families. Some recounted being emotionally and materially dependent on caregivers, which induced guilt and frustration.\u003c/p\u003e\n\u003cp\u003e“If you don’t dig, won’t you die of hunger? That’s it… people leave you when you fall sick.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“I hate that I can’t help my children anymore. They now take care of me instead.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e“I fetch water, cook, wash for my wife, and also dig. It is not easy but I can’t leave her.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTHEME 2: STIGMA, REJECTION, AND SOCIAL DEATH\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLymphedema in Kamwenge is not only a physical condition, it carries a deep social cost. Participants described how their identity, dignity, and relationships have been eroded by widespread stigma. The disease attracts mockery, distancing, and social death often turning those affected into objects of pity or rejection. The following sub-themes illustrate the breadth and impact of this experience.\u003c/p\u003e\n\u003cp\u003e2.1 Labelling, mockery, and social avoidance\u003c/p\u003e\n\u003cp\u003eAcross all groups, participants recounted how lymphedema subjects them to demeaning labels and public ridicule. Nicknames such as \"woman of boils,\" \"ekyinugwa\" (outcast), and \"the one with swollen legs\" were common. These labels are not only dehumanizing but reinforce isolation.\u003c/p\u003e\n\u003cp\u003e“When we go to church, they sit far from us.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“We are treated like animals, like we brought the disease to ourselves.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003e“We are insulted — people shout on the road: ‘eh, he is carrying the woman with swollen legs.’ Even our children at school are nicknamed ‘child of big leg.’”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003eA male stakeholder also acknowledged the existence of this mockery from within the community:\u003c/p\u003e\n\u003cp\u003e“People fear them, others laugh and call them names. That’s why some patients stop coming to public events.”\u003c/p\u003e\n\u003cp\u003e(KII-04, Local Council 1 Chairperson I)\u003c/p\u003e\n\u003cp\u003e2.2 Marital rejection and intimate abandonment\u003c/p\u003e\n\u003cp\u003eMany women reported being abandoned by husbands or partners who considered the disease a sign of bad luck or curse. This abandonment led to emotional trauma, economic vulnerability, and disruption of family stability.\u003c/p\u003e\n\u003cp\u003e“My husband left me, saying it was bad luck to marry a woman of lymphedema.”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“Even your husband says you are the cursed one with big legs.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003eMen, too, shared relational rejection and social withdrawal:\u003c/p\u003e\n\u003cp\u003e“You become unwanted. Even women look at you like you are finished.”\u003c/p\u003e\n\u003cp\u003e(FGD-04, Male Patient)\u003c/p\u003e\n\u003cp\u003e2.3 Stigma extending to children and family\u003c/p\u003e\n\u003cp\u003eThe stigma is not limited to the affected individual. Several participants explained how their children are also mocked or isolated because of their parent’s condition a form of intergenerational stigma.\u003c/p\u003e\n\u003cp\u003e“Even village children call my kids ‘gwa nyoko negyo mirumo’ meaning your mother is the one with the disease.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e“My child was chased from school by other pupils who said she will also swell.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Male Caregiver)\u003c/p\u003e\n\u003cp\u003e2.4 Internalized shame and emotional distress\u003c/p\u003e\n\u003cp\u003eOver time, repeated exclusion leads to internalized stigma feelings of self-disgust, loss of self-worth, and emotional fatigue. Both men and women spoke about retreating from society and struggling with shame.\u003c/p\u003e\n\u003cp\u003e“I started hating myself after I dropped out of school and people avoided me.”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“You don’t want to be seen. You cover your legs, you stay home, even family members treat you like a burden.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003e“Even the patient is left by the wife or husband. Then they hate themselves more.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003eA local leader affirmed how internalized stigma worsens patients’ mental state:\u003c/p\u003e\n\u003cp\u003e“Some stay in hiding. They no longer believe they can contribute to society.”\u003c/p\u003e\n\u003cp\u003e(KII-05, Local Council I Chairperson)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTHEME 3: KNOWLEDGE GAPS AND CULTURAL BELIEFS\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAlthough some participants had heard of lymphedema or received health education, Misunderstanding and misconceptions persist. Uncertainty about the disease’s cause, compounded by cultural interpretations and limited communication from health providers, has shaped how patients and communities respond. This theme is presented through three key sub-themes.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e3.1 Misunderstanding about the cause of the disease\u003c/p\u003e\n\u003cp\u003ePatients shared mixed messages received from health workers, community members, and their own experiences. Some associated the disease with infections, others with soil, while a few connected it to animal contact, hygiene and even witchcraft.\u003c/p\u003e\n\u003cp\u003e“Doctors said it’s syphilis. Others say it's in the soil. Others say I stepped in pig dung.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e“We were told it's in the soil, but we’re still not sure. We walk there every day; some people don’t get it.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003eThis uncertainty is also recognized by health officials:\u003c/p\u003e\n\u003cp\u003e“We’ve done many sensitizations, but people still confuse it with sexually transmitted diseases. They ask, ‘Why me and not others?’”\u003c/p\u003e\n\u003cp\u003e(KII-01, District Health Official)\u003c/p\u003e\n\u003cp\u003e3.2 Beliefs in witchcraft and spiritual causes\u003c/p\u003e\n\u003cp\u003eTraditional explanations continue to shape perceptions and influence care-seeking behavior. Some respondents referred to community narratives that blamed spiritual causes or ancestral curses.\u003c/p\u003e\n\u003cp\u003e“Some say we are bewitched… they tell us to go to the witch doctor.”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“People told me it’s a family curse. That’s why they don’t want to marry me.”\u003c/p\u003e\n\u003cp\u003e(FGD-04, Male Patient)\u003c/p\u003e\n\u003cp\u003eA key informant confirmed the persistence of these beliefs:\u003c/p\u003e\n\u003cp\u003e“They still seek help from traditional healers first. They think it’s a curse, not a medical condition.”\u003c/p\u003e\n\u003cp\u003e(KII-03, Community Health Coordinator, Elephantiasis Initiative)\u003c/p\u003e\n\u003cp\u003e3.3 Limited access to reliable information\u003c/p\u003e\n\u003cp\u003eMany participants expressed frustration at receiving unclear or inconsistent information from health facilities. Despite multiple visits or tests, their condition remained unexplained, leaving them confused and mistrustful.\u003c/p\u003e\n\u003cp\u003e“I have tested many times. They say nothing is wrong with me, but look at my legs!”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“No one tells us what it is. We just take Panadol and go home.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003eThis was echoed by a health worker:\u003c/p\u003e\n\u003cp\u003e“We lack diagnostic tools and consistent information. Patients leave confused, thinking it’s something else.”\u003c/p\u003e\n\u003cp\u003e(KII-02, Health Facility In-charge)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTHEME 4: GENDERED VULNERABILITIES AND ABANDONMENT\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLymphedema not only affects physical health but disrupts intimate relationships, family dynamics, and gender roles. Women were particularly vulnerable to abandonment and social isolation, while both genders faced expectations that clashed with their new limitations. The theme is elaborated across three sub-themes.\u003c/p\u003e\n\u003cp\u003e4.1 Women abandoned by partners\u003c/p\u003e\n\u003cp\u003eA striking number of female participants shared that they had been left by their husbands or partners after the onset of lymphedema. These women often became sole caregivers for their children, grappling with physical limitations and emotional distress.\u003c/p\u003e\n\u003cp\u003e“My husband left me, saying I brought bad luck. Since then, I raise the children alone.”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“I was chased away because of my swollen legs. They said I am not fit to be a wife.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003eCommunity leaders recognized this trend:\u003c/p\u003e\n\u003cp\u003e“Some men just abandon the woman when the swelling comes. They don’t want to be associated with that shame.”\u003c/p\u003e\n\u003cp\u003e(KII-05, Local Council I Chairperson I)\u003c/p\u003e\n\u003cp\u003e4.2 Emotional toll on male patients\u003c/p\u003e\n\u003cp\u003eMale patients also experienced emotional pain due to stigma and disrupted masculine identity. Some reported feeling “less of a man,” as the disease made it difficult to fulfill provider roles or maintain romantic relationships.\u003c/p\u003e\n\u003cp\u003e“I can’t marry now. Who will accept a man who can’t dig or walk properly?”\u003c/p\u003e\n\u003cp\u003e(FGD-04, Male Patient)\u003c/p\u003e\n\u003cp\u003e“Even women fear us. They look at our feet and turn away. You lose your respect as a man.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003e“When your wife has it, people say you are foolish to stay. But I stayed because someone must care for her.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003e4.3 Shifting gender roles and household strain\u003c/p\u003e\n\u003cp\u003eIn some cases, caregiving responsibilities shifted in ways that strained household dynamics. Women cared for affected male relatives, while children were forced to grow up quickly to support sick parents.\u003c/p\u003e\n\u003cp\u003e“I now rely on my daughter to cook and wash me. She’s only 13. It hurts me.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“When I’m down, my wife does everything: farming, feeding me, taking care of the kids.”\u003c/p\u003e\n\u003cp\u003e(FGD-04, Male Patient)\u003c/p\u003e\n\u003cp\u003e“Men rarely stay. They run away. I stayed because I feared God. Others call me foolish.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Male Caregiver)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTHEME 5: FRAGILE HEALTHCARE AND ACCESS BARRIERS\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eParticipants repeatedly emphasized the limitations of local healthcare systems in addressing lymphedema. Even when services were available, patients encountered a web of challenges, including dismissive health worker attitudes, lack of essential drugs, transport difficulties, and overwhelming facility congestion. This theme is structured across three core sub-themes.\u003c/p\u003e\n\u003cp\u003e5.1 Inadequate care and referral systems\u003c/p\u003e\n\u003cp\u003ePatients often felt they were not given proper care at health facilities. Some were sent home without treatment, while others received only symptomatic relief. There was a strong sense that health workers lacked training or motivation to treat lymphedema seriously.\u003c/p\u003e\n\u003cp\u003e“We go to the hospital, they give you Panadol and tell you to go. No one explains what you really have.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003e“They remove our books from the line and work on others first. You feel you are not wanted there.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“There is no one who checks on us like HIV patients. The legs bleed, and still no one comes.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003eHealth professionals acknowledged limitations:\u003c/p\u003e\n\u003cp\u003e“We lack diagnostic tools and guidelines. Most of our health workers have never been trained in managing this disease.”\u003c/p\u003e\n\u003cp\u003e(KII-02, Health Facility In-charge)\u003c/p\u003e\n\u003cp\u003e5.2 Financial and transport barriers\u003c/p\u003e\n\u003cp\u003eThe burden of seeking care was often unaffordable for many patients. Long distances to facilities, lack of transport, and the need to purchase medication out-of-pocket created many barriers, especially in rural sub-counties.\u003c/p\u003e\n\u003cp\u003e“We walk many kilometers with painful legs because there is no money for a boda.”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“You reach the hospital and they tell you to buy the medicine. If you have no money, you go back home and wait.”\u003c/p\u003e\n\u003cp\u003e(FGD-04, Male Patient)\u003c/p\u003e\n\u003cp\u003e“When I take the patient to the hospital and they write a prescription I can’t afford, I just bring them back home.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003e“If the patient is pregnant, she walks long distances with no special attention some even swell in their private parts.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003eA key informant confirmed the problem:\u003c/p\u003e\n\u003cp\u003e“Most facilities can’t stock these medicines, and patients can't afford regular transport to health centers.”\u003c/p\u003e\n\u003cp\u003e(KII-03, Community Health Coordinator, Elephantiasis Initiative)\u003c/p\u003e\n\u003cp\u003e5.3 Facility overload and health worker attitudes\u003c/p\u003e\n\u003cp\u003eParticipants described overcrowded health centers and feeling disrespected or ignored by health workers. Some felt that their condition was seen as a nuisance rather than a legitimate health concern.\u003c/p\u003e\n\u003cp\u003e“They treat us like we are wasting their time. Some health workers look at our legs with disgust.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e“You arrive early but are worked on last. Even talking to the nurse feels like begging.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTHEME 6: COPING MECHANISMS AND INFORMAL CARE\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFaced with persistent pain, stigma, and inadequate formal healthcare, many individuals have developed personal and communal strategies to cope with the burden of lymphedema. These strategies are rooted in tradition, faith, and survival, often compensating for the health system’s failures. Three sub-themes emerged prominently.\u003c/p\u003e\n\u003cp\u003e6.1 Use of herbs and traditional remedies\u003c/p\u003e\n\u003cp\u003eIn the absence of effective or accessible biomedical care, many patients turn to herbal treatments, including boiling local plants or bathing in ash. Remedies like omufurura were widely cited.\u003c/p\u003e\n\u003cp\u003e“What helps me is omufurura. I dry them and drink it like tea, and the pain reduces.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“We apply ash and smear the legs. Sometimes it works for a few days.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003eA local leader validated this pattern:\u003c/p\u003e\n\u003cp\u003e“People use what is available herbs, local oil, even prayers because the hospital doesn’t help much.”\u003c/p\u003e\n\u003cp\u003e(KII-04, Local Council Chairperson I)\u003c/p\u003e\n\u003cp\u003e6.2 Faith, prayer, and spiritual resilience\u003c/p\u003e\n\u003cp\u003eFaith-based coping emerged as a dominant strategy, particularly among women. Many participants cited prayer and trust in God as a major source of strength, especially when medical hope had faded.\u003c/p\u003e\n\u003cp\u003e“I thank Jesus. When I feel like giving up, I pray and I feel stronger.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“Church helps me not to cry all the time. They pray for me and sometimes give soap.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e6.3 Peer support and self-care routines\u003c/p\u003e\n\u003cp\u003ePatients also found comfort and practical support in one another. Shared experiences fostered peer bonds, and some developed personal routines for managing symptoms such as soaking feet, resting during the day, and eating certain foods.\u003c/p\u003e\n\u003cp\u003e“We share advice. One told me to always wash with warm water and salt. It helps me.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003e“When I meet someone with the same disease, I don’t feel so alone anymore.”\u003c/p\u003e\n\u003cp\u003e(FGD-04, Male Patient)\u003c/p\u003e\n\u003cp\u003e“We soak their legs in salt and water, wash them with the soap an NGO once gave us… but we have no gloves or protection.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003e“We have taught our children how to care for their parent when we are away. Even the small ones help with water or cooking.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eTHEME 7: INSTITUTIONAL GAPS AND RECOMMENDATIONS\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWhile community members have crafted their own coping mechanisms, many feel let down by formal institutions. Government and Non-Governmental Organisation promises have often gone unfulfilled, and affected individuals remain excluded from most social protection programs. Still, there is a growing chorus of practical recommendations from the community itself. This theme is structured around three sub-themes.\u003c/p\u003e\n\u003cp\u003e7.1 Broken promises and short-lived support\u003c/p\u003e\n\u003cp\u003eMany participants recalled past efforts like soap distributions or NGO visits but emphasized that these were inconsistent or abandoned without explanation hence causing disappointment.\u003c/p\u003e\n\u003cp\u003e“They gave us basins and soap once and never came back. We don’t even know who they were.”\u003c/p\u003e\n\u003cp\u003e(FGD-01, Female Patient)\u003c/p\u003e\n\u003cp\u003e“People came saying they would help. We signed things, but nothing happened.”\u003c/p\u003e\n\u003cp\u003e(FGD-04, Male Patient)\u003c/p\u003e\n\u003cp\u003eOne stakeholder confirmed this frustration:\u003c/p\u003e\n\u003cp\u003e“There have been short bursts of support like boots, salt, oils but no follow-up or system. It ends as quickly as it starts.”\u003c/p\u003e\n\u003cp\u003e(KII-03, Community Health Coordinator, Elephantiasis Initiative)\u003c/p\u003e\n\u003cp\u003e7.2 Exclusion from social protection and health programs\u003c/p\u003e\n\u003cp\u003eDespite their vulnerability, people living with lymphedema are not explicitly included in disability or social support schemes. Many feel “invisible” to both health systems and local government structures.\u003c/p\u003e\n\u003cp\u003e“We are not considered disabled, but we cannot work or move well. Who will help us?”\u003c/p\u003e\n\u003cp\u003e(FGD-05, Female Patient)\u003c/p\u003e\n\u003cp\u003e“Even when they register people for help, our names are not called.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003e“We are not registered for any program. No one includes us in government things like PDM. Even at the hospital, they know the disease but do nothing.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003eA district-level official echoed these concerns:\u003c/p\u003e\n\u003cp\u003e“They are not captured under disability programming or targeted support, so they fall through the cracks.”\u003c/p\u003e\n\u003cp\u003e(KII-01, District Health Official)\u003c/p\u003e\n\u003cp\u003e7.3 Community-driven recommendations\u003c/p\u003e\n\u003cp\u003eDespite frustrations, participants had clear and actionable ideas for improving the situation. These included distribution of protective footwear, training of local health workers, consistent follow-up, and sensitization campaigns to reduce stigma.\u003c/p\u003e\n\u003cp\u003e“Let them teach us and also give gumboots. Even that alone can prevent the disease.”\u003c/p\u003e\n\u003cp\u003e(FGD-03, Female Patient)\u003c/p\u003e\n\u003cp\u003e“We need people to come regularly, not just one time. If we are followed up, we will not give up.”\u003c/p\u003e\n\u003cp\u003e(FGD-02, Male Patient)\u003c/p\u003e\n\u003cp\u003e“They never ask caregivers what we go through. We are also tired and need support.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003e“If community members could visit and help each other bring a bandage, share advice, not isolate us that would restore dignity.”\u003c/p\u003e\n\u003cp\u003e(FGD-06, Caregiver)\u003c/p\u003e\n\u003cp\u003eLeaders also emphasized the need for consistent community engagement:\u003c/p\u003e\n\u003cp\u003e“We are ready to mobilize people, but we need tools and follow-through. Don’t just assess, act.”\u003c/p\u003e\n\u003cp\u003e(KII-05, Local Council Chairperson I)\u003c/p\u003e\n\u003cp\u003e\"So my thinking and prayer is that this continued engagement with you... should quickly guide the intervention... We are trying to ensure we increase access to water, and basically information.\"\u003c/p\u003e\n\u003cp\u003e(KII-07, District Health Official)\u003c/p\u003e\n\u003cp\u003e\"What should be done... the sub-county, district and the country should consider them in their budget then they put for them help...\"\u003c/p\u003e\n\u003cp\u003e(KII-03, Community Health Coordinator, Elephantiasis Initiative)\u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study provides an in-depth exploration of the lived experiences, beliefs, and healthcare challenges surrounding lymphedema in Kamwenge District, Uganda. Through qualitative insights from affected individuals, caregivers, and community stakeholders, lymphedema emerges as a complex, multidimensional health burden that intersects with poverty, gender inequity, and health system limitations[\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. The findings show that the disease's physical symptoms chronic pain, swelling, and immobility are only part of a wider burden[\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Affected individuals also face profound emotional distress, loss of economic independence, and social alienation, including stigma so severe that it leads to what some described as \u0026ldquo;social death\u0026rdquo; [\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e].These experiences are deeply shaped by local beliefs, misinformation, and systemic neglect. Cultural explanations of lymphedema ranging from spiritual curses to sexually transmitted infections complicate timely care-seeking and deepen stigma[\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eGender emerged as a powerful axis of vulnerability. Women, in particular, were frequently abandoned by partners and left to manage both their illness and childrearing alone[\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e]. Meanwhile, male patients described diminished self-worth and identity crises due to loss of productivity and rejection. Caregivers mostly family members also bore a heavy burden, often without institutional or emotional support[\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e]. Health system limitations were clearly articulated by both patients and providers. There is a lack of diagnostic tools, trained personnel, treatment protocols, and follow-up mechanisms[\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e]. Patients often reported being dismissed or given only symptomatic relief, while providers acknowledged feeling unequipped to respond. Financial and geographic barriers further compound access to care, especially in remote rural areas[\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e].\u003c/p\u003e\u003cp\u003eDespite these challenges, communities have developed informal coping mechanisms: from herbal remedies to mutual caregiving networks and spiritual support systems[\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e]. These grassroots adaptations demonstrate resilience and highlight the urgent need for structured support to amplify rather than replace them. Importantly, participants offered clear recommendations: routine follow-up by health workers, provision of protective supplies (for example footwear and soap), community education to combat stigma, and formal inclusion in disability and social protection programs. These community-driven proposals underscore a strong willingness to collaborate in future intervention design and implementation[\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e].\u003c/p\u003e\u003cp\u003e\u003cstrong\u003eLimitations\u003c/strong\u003e\u003cp\u003eThis study captured a single point in time, limiting its ability to reflect how knowledge, behaviours, or healthcare practices may evolve over time due to its cross sectional nature design.\u003c/p\u003e\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eLymphedema in Kamwenge District is far more than a neglected tropical disease, it is a deeply entrenched social, economic, and gendered issue. The findings from this study reveal how affected individuals live at the intersection of chronic illness, poverty, stigma, and systemic healthcare neglect. The community\u0026rsquo;s resilience is evident in the informal strategies developed to cope with this burden, yet these strategies are not a substitute for structured, sustained intervention. To address this multifaceted challenge, future efforts must go beyond clinical management. They must integrate community education, health system strengthening, and gender-sensitive support programs. Urgent policy attention is needed to include lymphedema in national disability, social protection, and neglected disease frameworks. Listening to those most affected, and acting on their recommendations, is not only ethically imperative it is essential for sustainable and responsive public health action.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cp\u003e\u003cstrong\u003eLF:\u0026nbsp;\u003c/strong\u003eLymphatic Filariasis\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eKIIs:\u0026nbsp;\u003c/strong\u003eKey informant Interviews\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFGDs:\u0026nbsp;\u003c/strong\u003eFocus group Discussions\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMUST:\u0026nbsp;\u003c/strong\u003eMbarara University of science and Technology.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eVHTs:\u0026nbsp;\u003c/strong\u003eVillage Health Teams.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eNGO:\u003c/strong\u003e Non-Governmental Organisation\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthical approval.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis study was conducted in accordance with the ethical principles outlined in the Declaration of Helsinki. Ethical approval was obtained from the Mbarara University Research Ethics Committee (MUST-2024-1711) and the Uganda National Council for Science and Technology (HS5335ES). Additional authorization was granted by the Kamwenge District Health Officer and the Medical Director of Rukunyu Hospital. Written informed consent was obtained from all participants prior to data collection. All research activities adhered to established national and institutional ethical guidelines and regulatory standards. Participants identified with infections during the study were referred to qualified healthcare providers for appropriate medical treatment. As this was not a clinical trial, a clinical trial registration number is not applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent to participate.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eInformed written consent was secured from all participants before data collection began. Each participant received comprehensive information regarding the study\u0026rsquo;s objectives, their rights, and the voluntary nature of their involvement. They were assured of their right to withdraw from the study at any point without facing any negative consequences. Participants found to have infections during the course of the study were referred to qualified healthcare professionals for appropriate medical care.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u0026nbsp;\u003c/strong\u003e\u003cstrong\u003eConsent for Publication\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eNot applicable.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe data supporting the findings of this study are available from the corresponding author upon reasonable request.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that they have no competing interests.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors received no external funding or financial support for the conduct of this study.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors\u0026apos; contributions.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eMV, FB, HI, and EMM conceptualized the study and defined the research objectives. MV, CB, BM, and JTB were responsible for developing the study methodology and drafting the research protocol. Data cleaning was performed by MV, CB, RM, and BM. Data collection was carried out by MV, HI, BM, and GKA, while data analysis was conducted by CB, CNB and MV. MV, BM, and TJB prepared the initial manuscript draft. HZ, JB, BBA, and FB contributed to reviewing and refining the first draft, with EMM, FB, and HI providing further editorial input, oversight, and supervision of the overall research process.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements.\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eWe extend our heartfelt gratitude to Dr. William Mucunguzi, the District Health Officer, and Dr. Ivan Mujuni, Medical Director of Rukunyu Hospital, for their invaluable support throughout the course of this study. We also thank Mr. Beyanga Evarist, Mr. Atayebwa Solomon, and the Village Health Team (VHT) members, and Ms Ninsiima Elizabeth for their coordination and assistance during the data collection process. Additionally, we thank Uganda Research Student Support Fund for the support given, and gratitude goes to the staff of the Rukunyu Hospital Laboratory Department for their contributions to sample collection and analysis.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\n\u003cli\u003eV. Mwesigye, D. Atwine, E. F. Munguciada, A. Tillema, J. B. Tebulwa, B. B. Agaba\u003cem\u003e, et al.\u003c/em\u003e, \u0026quot;Global Preventive and Management Strategies and Their Effectiveness in Patients With Secondary Lymphedema: A Scoping Review,\u0026quot; \u003cem\u003eCureus, \u003c/em\u003evol. 17, p. e83627, 2025.\u003c/li\u003e\n\u003cli\u003eR. Elia and M. Maruccia, \u0026quot;Lymphedema and Wound Care,\u0026quot; in \u003cem\u003ePearls and Pitfalls in Skin Ulcer Management\u003c/em\u003e, ed: Springer, 2024, pp. 649-660.\u003c/li\u003e\n\u003cli\u003eT. Grantham-Price, \u0026quot;Exploring the Landscape of Lymphedema Advocacy and Policy Advancement: An Explanatory Sequential Mixed Methods Study on Provider Engagement and Perceptions,\u0026quot; The University of Mississippi Medical Center, 2024.\u003c/li\u003e\n\u003cli\u003eE. Torgbenu, T. Luckett, M. Buhagiar, C. M. Requena, and J. L. Phillips, \u0026quot;Improving care for cancer-related and other forms of lymphoedema in low-and middle-income countries: a qualitative study,\u0026quot; \u003cem\u003eBMC health services research, \u003c/em\u003evol. 22, p. 461, 2022.\u003c/li\u003e\n\u003cli\u003eN. Sun and J. J. Amon, \u0026quot;Addressing inequity: neglected tropical diseases and human rights,\u0026quot; \u003cem\u003eHealth and human rights, \u003c/em\u003evol. 20, p. 11, 2018.\u003c/li\u003e\n\u003cli\u003eL. C. Dean, \u003cem\u003eNarratives of neglect: privileging the priorities of affected persons to support health systems strengthening and the development of equitable people-centered responses to neglected tropical diseases in Liberia\u003c/em\u003e: The University of Liverpool (United Kingdom), 2019.\u003c/li\u003e\n\u003cli\u003eV. Braun and V. Clarke, \u0026quot;Using thematic analysis in psychology,\u0026quot; \u003cem\u003eQualitative research in psychology, \u003c/em\u003evol. 3, pp. 77-101, 2006.\u003c/li\u003e\n\u003cli\u003eO. Mitj\u0026agrave;, M. Marks, L. Bertran, K. Kollie, D. Argaw, A. H. Fahal\u003cem\u003e, et al.\u003c/em\u003e, \u0026quot;Integrated control and management of neglected tropical skin diseases,\u0026quot; \u003cem\u003ePLoS neglected tropical diseases, \u003c/em\u003evol. 11, p. e0005136, 2017.\u003c/li\u003e\n\u003cli\u003eA. A. Grada and T. J. Phillips, \u0026quot;Lymphedema: Pathophysiology and clinical manifestations,\u0026quot; \u003cem\u003eJournal of the American Academy of Dermatology, \u003c/em\u003evol. 77, pp. 1009-1020, 2017.\u003c/li\u003e\n\u003cli\u003eB. Person, L. K. Bartholomew, M. Gyapong, D. G. Addiss, and B. van den Borne, \u0026quot;Health-related stigma among women with lymphatic filariasis from the Dominican Republic and Ghana,\u0026quot; \u003cem\u003eSocial Science \u0026amp; Medicine, \u003c/em\u003evol. 68, pp. 30-38, 2009.\u003c/li\u003e\n\u003cli\u003eK. Ozano, L. Dean, M. Yoshimura, E. MacPherson, N. Linou, M. Otmani del Barrio\u003cem\u003e, et al.\u003c/em\u003e, \u0026quot;A call to action for universal health coverage: Why we need to address gender inequities in the neglected tropical diseases community,\u0026quot; \u003cem\u003ePLoS neglected tropical diseases, \u003c/em\u003evol. 14, p. e0007786, 2020.\u003c/li\u003e\n\u003cli\u003eE. Stillwaggon, L. Sawers, J. Rout, D. Addiss, and L. Fox, \u0026quot;Economic costs and benefits of a community-based lymphedema management program for lymphatic filariasis in Odisha State, India,\u0026quot; \u003cem\u003eThe American journal of tropical medicine and hygiene, \u003c/em\u003evol. 95, p. 877, 2016.\u003c/li\u003e\n\u003cli\u003eW. H. Organization, \u0026quot;Lymphatic filariasis: managing morbidity and preventing disability: an aide-m\u0026eacute;moire for national programme managers: web annex A: protocol for evaluating minimum package of care of morbidity management and disability prevention for lymphoedema management in designated health facilities,\u0026quot; in \u003cem\u003eLymphatic filariasis: managing morbidity and preventing disability: an aide-m\u0026eacute;moire for national programme managers, second edition: web annex A: protocol for evaluating minimum package of care of morbidity management and disability prevention for lymphoedema management in designated health facilities\u003c/em\u003e, ed, 2021.\u003c/li\u003e\n\u003cli\u003eD. H. Molyneux, L. Savioli, and D. Engels, \u0026quot;Neglected tropical diseases: progress towards addressing the chronic pandemic,\u0026quot; \u003cem\u003eThe Lancet, \u003c/em\u003evol. 389, pp. 312-325, 2017.\u003c/li\u003e\n\u003cli\u003eH. Rilkoff, E. M. Tukahebwa, F. M. Fleming, J. Leslie, and D. C. Cole, \u0026quot;Exploring gender dimensions of treatment programmes for neglected tropical diseases in Uganda,\u0026quot; \u003cem\u003ePLoS neglected tropical diseases, \u003c/em\u003evol. 7, p. e2312, 2013.\u003c/li\u003e\n\u003cli\u003eN. T. Chandrasena, R. Premaratna, C. H. Mallawarachchi, D. G. Gunaratna, and N. R. de, \u0026quot;Lymphatic filariasis in the Southeast Asian region; status and control options,\u0026quot; \u003cem\u003eCABI Reviews, \u003c/em\u003e2020. \u003c/li\u003e\n\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"discover-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"","sideBox":"Learn more about [Discover Public Health](https://link.springer.com/journal/12982)","snPcode":"12982","submissionUrl":"https://submission.springernature.com/new-submission/12982/3","title":"Discover Public Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Lymphedema, Uganda, qualitative research, stigma, rural health, caregiving, health systems, neglected tropical diseases","lastPublishedDoi":"10.21203/rs.3.rs-7045452/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-7045452/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cstrong\u003eBackground\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLymphedema is a progressive, disabling condition caused by lymphatic system failure, yet it remains a neglected health issue, especially in low-resource settings. In rural Uganda’s Kamwenge District, affected individuals face not only chronic physical symptoms like swelling and pain but also considerable social and emotional challenges. Misunderstandings about the condition, culturally rooted stigma, and limited access to timely diagnosis and appropriate treatment further exacerbate the problem. Despite global efforts to address lymphedema within neglected tropical disease (NTD) programs, many affected communities remain marginalized and underserved. Beyond clinical symptoms, lymphedema disrupts livelihoods, education, family dynamics, and social participation. This study used a qualitative design to explore the lived experiences of lymphedema patients and caregivers in Kamwenge. It examined community knowledge, healthcare barriers, and cultural beliefs to identify locally relevant strategies for prevention, care, and stigma reduction.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eMethods\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eA community-based qualitative study design was employed. Data were collected through five focus group discussions (FGDs) involving lymphedema patients and caregivers, and seven key informant interviews (KIIs) with local health officials, community leaders, and religious figures. Participants were purposively sampled from Rukunyu Hospital and surrounding communities to capture diverse perspectives. Data were transcribed, translated, and analysed using Braun and Clarke’s thematic analysis approach.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eResults\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eSeven key themes emerged: (1) patients’ daily struggles with pain, dependence, and economic hardship; (2) stigma leading to social exclusion; (3) gaps in knowledge and culturally influenced misconceptions about causes and treatment; (4) gender-specific vulnerabilities such as abandonment and psychological distress; (5) weak healthcare infrastructure and limited access; (6) reliance on informal coping strategies including herbal remedies, faith, and peer support; and (7) institutional deficiencies alongside community-driven recommendations for improved care and prevention. Despite some health education efforts, misinformation and stigma remain widespread, and affected individuals are often excluded from social support programs.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConclusion\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eLymphedema in Kamwenge District is a complex issue intersecting health, social stigma, and systemic weaknesses. Urgent, community-focused interventions are critical to closing knowledge gaps, enhancing healthcare services, reducing stigma, and integrating lymphedema management into national health policies.\u003c/p\u003e","manuscriptTitle":"A Qualitative Study of Knowledge, Experiences, and Healthcare Needs of People Living with Lymphedema in Kamwenge District, Rural Uganda","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2025-07-22 17:58:21","doi":"10.21203/rs.3.rs-7045452/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2025-08-20T11:04:44+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-08-11T05:24:57+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"41701381030822661303853464907188594942","date":"2025-08-06T21:09:09+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"46853619674046789909372246355645723211","date":"2025-08-04T22:45:43+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-08-02T10:31:57+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"330633776252218177963866136601284049564","date":"2025-07-26T20:28:01+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2025-07-23T10:38:39+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"251211468151773765358074284682548928326","date":"2025-07-19T08:47:08+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2025-07-18T13:04:05+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2025-07-18T13:03:33+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2025-07-11T16:27:44+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2025-07-10T16:13:21+00:00","index":"","fulltext":""},{"type":"submitted","content":"Discover Public Health","date":"2025-07-10T13:23:26+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"discover-public-health","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"","sideBox":"Learn more about [Discover Public Health](https://link.springer.com/journal/12982)","snPcode":"12982","submissionUrl":"https://submission.springernature.com/new-submission/12982/3","title":"Discover Public Health","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Discover Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"17f3e461-6294-4389-8478-63a7ccc352f8","owner":[],"postedDate":"July 22nd, 2025","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"published-in-journal","subjectAreas":[],"tags":[],"updatedAt":"2025-11-03T16:02:49+00:00","versionOfRecord":{"articleIdentity":"rs-7045452","link":"https://doi.org/10.1186/s12982-025-01043-1","journal":{"identity":"discover-public-health","isVorOnly":false,"title":"Discover Public Health"},"publishedOn":"2025-10-27 15:58:26","publishedOnDateReadable":"October 27th, 2025"},"versionCreatedAt":"2025-07-22 17:58:21","video":"","vorDoi":"10.1186/s12982-025-01043-1","vorDoiUrl":"https://doi.org/10.1186/s12982-025-01043-1","workflowStages":[]},"version":"v1","identity":"rs-7045452","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-7045452","identity":"rs-7045452","version":["v1"]},"buildId":"8U1c8b4HqxoKbykW_rLl7","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}