Data collection.

Data for the quantitative phase was gathered using a questionnaire that was theoretically informed by the SeMaS framework [17]. The tool aimed at assessing the participants’ ability to manage their health independently, taking into account their skills, motivation, and support systems. The questionnaire consisted of three sections. The first section captured the sociodemographic information and clinical profile of the respondents. The sociodemographic aspect of the questionnaire used the modified Kuppuswamy scale for the year 2024 to capture the socioeconomic status of the respondents. The scale captures the education level and occupation of the head of the family, along with total per capita family income per month adjusted for the consumer price index to classify the participants into upper, upper middle, lower middle, upper lower and lower socioeconomic classes [21]. The second section consisted of a modified version of the SeMas tool, and the third section of the questionnaire captured the MMDP practices of the participants, rated on a five-point Likert scale, with higher scores indicating better MMDP practice. Questions on barriers to MMDP practices included predefined options refined through pilot surveys conducted among lymphatic filariasis patients attending the clinic, distinct from those enrolled in the study, along with an open-ended option to allow participants to elaborate on their perceived barriers. The questionnaire was in Tamil, the vernacular language of the respondents. The barriers listed were derived from the literature and expert opinions and then refined based on the preliminary findings from pilot interviews. The final version was designed to capture the barriers with a preset list, followed by an option to add any other barrier that the respondent raised. The morbidity management practices were assessed using a structured tool that captured multiple domains of home-based care, including limb washing, drying, nail care, interdigital space care, exercise, limb elevation, bandaging, limb massage, and footwear use. For each practice, both frequency (using a 5-point Likert scale ranging from Always to Never) and perceived barriers (knowledge gaps, physical constraints, pain, motivational issues, and social or occupational limitations) were documented. In addition, perceived benefits of limb care were captured using a 3-point Likert scale (Significant benefit, Moderate benefit, No benefit), along with self-reported clinical improvements.

The questionnaire underwent content validation, piloting, and reliability testing. Initially, a modified Delphi technique was employed with experts to validate the content, ensuring that the questionnaire comprehensively addressed all relevant domains and was well-structured. The questionnaire was piloted in two stages to assess its validity and reliability. In the first round, 10 participants completed the questionnaire and provided feedback, focusing on comprehension, clarity, appropriateness, and the adequacy of response options. Based on this feedback, the questions and response categories were refined. In the second round, the revised questionnaire was administered to an additional group of 20 participants to confirm comprehension and ensure the sufficiency of the response options. The reliability of the questionnaire was tested by measuring internal consistency using Cronbach’s alpha, with the final tool demonstrating a reliable alpha value of 0.761. The original English questionnaire was meticulously translated into Tamil (the vernacular language) with the help of a bilingual expert whose first language is Tamil and has good expertise in English and again the translated version was back-translated by another bilingual expert to ensure both linguistic and conceptual equivalence, thus minimizing the risk of misinterpretation.

Data collection was carried out by three trained investigators, ensuring consistency and reliability in the gathered information. Interview schedule for the quantitative phase was carried out by a senior nursing professional with over 30 years of experience in managing filariasis patients and conducting field surveys. The qualitative interviews were conducted by a medical doctor and a social scientist, trained in qualitative research methods and having experience working with lymphatic filariasis patients. At the conclusion of each interview, participants received counselling on morbidity management and disability prevention, thereby ensuring that the study provided direct benefits to the participants.

Data analysis.

Data were analyzed using STATA 14.2 [22]. Descriptive statistics were used to summarize the participants’ demographic and clinical characteristics, (MMDP) practices, and barriers encountered. The morbidity management practices were recorded on a 5-point Likert scale, and were scored with 2 points for adherence to recommended behaviors, 1 point for partially appropriate practices, and 0 points for no attempt. The SeMaS scoring system was applied to categorize participants based on the extent of barriers faced, using the original methodology [17]. The association of sociodemographic and clinical characteristics with morbidity management scores and perceived burden were analyzed using linear regression, adjusting for potential confounders. A p-value < 0.05 was considered statistically significant.

Participant selection and data collection.

A set of respondents from the first phase, i.e., the quantitative phase, were purposively selected as the participants for the qualitative phase, to ensure a diverse representation of perspectives segregated by gender and treatment-seeking behaviour. The qualitative phase involved a combination of in-depth interviews and focus group discussions. Using multiple qualitative data collection methods ensured reaching robust conclusions about the research question through method triangulation [26–28]. Participants were informed about the study’s objectives and the voluntary nature of their involvement. Both the IDIs and FGDs took place at locations convenient for the participants and were conducted in Tamil, their native language. Separate interview guides, tailored for IDIs and FGDs, were developed based on existing literature, expert recommendations and findings from the quantitative phase [29–31]. While the core questions remained the same for IDIs and FGDs, the IDI interview guides included additional probe questions to elicit more nuanced responses from respondents, which sometimes cannot be elicited during FGDs due to their open nature.

The guide included probing questions to help keep participants focused while discussing their views. All IDIs and FGDs were audio-recorded after getting informed consent from the participants. Each IDI lasted between 40–60 minutes, while the FGDs ranged from 90 minutes to 2 hours. All IDIs and FGDs were audio-recorded with the participants’ consent. The content was then translated into English verbatim and reviewed by a bilingual expert to ensure the accuracy of the translation.

Two Separate FGDs were done each for male and female patients separated by their regularity in follow-up. The time and place of IDIs and FGDs were scheduled at the convenience of the participants. Each FGD lasted for one hour 30 minutes to 2 hours. Twelve IDIs with patients (under regular follow-up, irregular follow-up, and no follow-up) and four IDIs with caretakers equally distributed by gender were conducted. Each IDI lasted from 40 minutes to one hour (Table 1). Data saturation was ensured by including an adequate number of respondents across IDIs and FGDs, until new interviews or discussions yielded no additional insights beyond a certain threshold [32].

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Table 1. List of FGDs and IDIs.

https://doi.org/10.1371/journal.pntd.0013903.t001

Data analysis.

The transcripts of the IDIs and FGDs were analysed with the SeMaS framework [17], using Atlas.ti software. Since the SeMaS framework provided a thematic structure, a deductive approach to data analysis was employed. The content was analysed within the framework of the six domains of SeMaS framework viz. Perceived Burden, Locus of Control, Self-Efficacy, Social Support, Coping, and Anxiety and Depression. Each of these themes was probed in the data transcripts to understand factors contributing to poor MMDP practices. Relevant segments from the transcript were then coded by a researcher based on domains of the SeMaS framework. In order to ensure intercoder reliability, the coded data were then independently evaluated by two other researchers. Only the transcript segments corresponding to SeMaS domains with 100 per cent intercoder reliability were retained for triangulating with the quantitative data.

Perceived burden.

In the context of lymphatic filariasis, perceived burden can be multifaceted, stemming from the physical manifestations of the disease and societal responses. The key domains of perceived burden affecting MMDP, as reported by the respondents, are listed below.

Physical burden: LF can induce significant physical challenges, such as pain, restricted movement and difficulty in performing day-to-day tasks. Physical burden manifested in two important forms among the participants viz. daily activities-related burden and job-related burden.

In terms of burden pertaining to daily activities, the majority of the patients thought that filariasis had affected their daily activities; though the magnitude varied. While some of the participants were able to do all their daily activities without external help, some participants were unable to accomplish their daily activities themselves. For instance, a female participant commented that even the use of the toilet posed challenges for her.

This disease restricts many of my daily activities. I can’t bend or fold my legs; I am not able to sit and do activities like others. While washing clothes, I sit with my legs wide open and it is very difficult. I am not even able to use a toilet (Indian); I just sit on the floor. (IDI_9_F)

Additionally, it was apparent from the interviews and FGDs that the disease had a major impact on the patient’s jobs and livelihoods. Patients narrated their experience of how they lost their jobs because of the disease, how their jobs exacerbated the risk for infections and ADLA attacks, and how their work affected their limb hygiene and home-based care activities.

I work as a security personnel. My legs are swollen and I am unable to wear shoes. So, I’m working in a small place where they don’t demand to wear shoes. I wish to wear some good adjustable footwear, but couldn’t get one. (P3_FGD_M2).

Emotional and social burden: The emotional burden associated with lymphatic filariasis significantly hinders individuals from engaging in essential MMDP practices. Emotional distress, including feelings of worthlessness, shame, and depression, reduces motivation and self-efficacy, making it difficult for individuals to adhere to self-care routines such as limb washing, bandaging, or exercising. Such pervasive feelings of inadequacy, often originating from social discrimination, may lead individuals to neglect self-care activities. Additionally, stigma and self-consciousness about the disease further discourage public engagement in MMDP, as seen in the following statement.

I remove the bandage while going outside because I feel uneasy that I look disgusting to people. (P1_FGD_F2).

Fear of social judgment can also exacerbate emotional distress, making individuals hesitant to seek help or consistently follow medical advice. For example, a participant commented:

When I feel low, the weight of it all makes it easier to retreat into sleep than face the struggle of managing the disease. (IDI_7_M).

Financial burden: Financial strain is another critical barrier preventing individuals with LF from effectively practising MMDP.

I tie the bandage myself, and though it gets dirty and loose, I can’t afford to replace it often.(IDI_12_M).

Financial instability can also lead to tension within families, further discouraging adherence to MMDP.

We face a lot of financial struggles, and my husband resents me for seeking medical treatment, insisting that it’s pointless. (IDI_9_F).

Another participant stated that her poor economic background forced her to work to make ends meet, depriving her of the time to practice MMDP.

I am doing household chores [as a maid] and earning 3000 rupees per month. I don’t have time to do all the self-care activities properly. (IDI_6_F)

The participants also pointed out the lack of support from the state to cover their medical expenses.

If the government supports us by giving some pension, it will be very helpful. (P2_FGD_M2)

The perceived burden of lymphatic filariasis adversely affects MMDP practices. It not only reduces motivation and ability but also contributes to a sense of isolation and hopelessness among those affected. Addressing these burdens requires a comprehensive approach that combines physical rehabilitation, emotional counselling, community support, and financial assistance.

Locus of control.

Participants expressed varying degrees of perceived control over managing their lymphedema care. Some described taking active steps in their self-care routines despite challenges, while others felt helpless due to the progressive nature of the condition and external circumstances limiting their ability to manage symptoms effectively.

Internal Locus of Control: An internal locus of control is characterised by the belief that one’s own actions can positively influence health outcomes. Participants demonstrating this perspective often showed greater effort in self-care practices despite physical or emotional challenges. For instance, participant IDI_7_M commented:

I know that if I wash my legs daily, I won’t get infections. (IDI_7_M).

Another participant stated how he understood that the disease, despite being incurable, can be controlled with MMDP.

If we use medicines properly and maintain our legs clean, it can have a good impact. (P3_FGD_F2)

External Locus of Control: An external locus of control reflects the belief that health outcomes are primarily determined by external forces, such as fate, the nature of the disease, or societal factors. This perspective often leads to feelings of helplessness and reduced adherence to MMDP practices. For instance, participant IDI_9_F commented:

Whenever I overwork, especially with physical labour, my condition worsens—I often get a fever, and things quickly spiral downhill. If I rest and keep my leg clean, it stays manageable. But as a homemaker with many responsibilities, it’s not always possible, I am helpless. (IDI_1_F).

Some respondents stated that they can do little about the disease progression and hence they are not in control.

I have had this disease for many years. Even though I maintain my legs, the swelling keeps increasing. I don’t think anything can stop it. (P1_FGD_M 2).

Self-efficacy.

Self-efficacy, in the context of this research, implies one’s confidence to manage LF and adhere to MMDP practices. Insights from IDIs and FGDs highlight the factors influencing self-efficacy, including physical challenges, time constraints, stigma, and availability of social support. Participants demonstrated varying degrees of self-efficacy in washing and drying their limbs. The participants had varying degrees of self efficacy shaped by multiple factors, of which the following were the predominant factors.

Physical Constraints: Physical ailments pose significant constraints to MMDP practices. The chronic and progressive nature of the disease results in swelling, pain, limited mobility, and recurring episodes of ADL, all of which hinder adherence to MMDP practices. Early adherence to MMDP can limit the progression to such stages, but later on, the physical challenges make practising MMDP difficult.

I can’t do exercises because I’m unable to fold my legs. Sitting properly is also a challenge, and this leaves me feeling frustrated. Sometimes, I even have to stand while eating… (IDI_7_M).

Lack of Skills and Motivation: Participants expressed difficulties in executing MMDP practices due to a lack of proper knowledge or confidence in their techniques. For instance, a male participant from the IDI commented that he was unable to execute bandaging properly.

I tie the bandage, but it gets loose. I don’t know how to tie it properly so that it stays firm. (IDI_7_M)

Lack of adequate skills or knowledge can lead to poor motivation among the patients, as they deem their efforts useless.

If I don’t know the proper way to do things, it feels like whatever I do is useless. (P2_FGD_F1)

Eventually it can lead to a sense of distrust in the MMDP practices and lead to poor motivation to practice MMDP.

I don’t apply the bandage because it doesn’t seem to make a difference, and anyway, I feel too tired to do it regularly. (P3_FGD_F2).

Social support.

Social support is a key facilitator of MMDP practices. The availability and quality of support from family and the broader community significantly influence adherence to MMDP practices. The narratives revealed diverse experiences, with the level of social support significantly facilitating or hindering adherence to MMDP practices.

Family Support: Family members often play a pivotal role in assisting with daily self-care tasks. Participants shared instances where family support positively impacted their ability to manage their condition. For instance a participant narrated how her husband and daughter helped in better bandaging.

If I apply the bandage by myself, it will loosen. So, I get help from my husband or daughter, and they tie it well. (P5_FGD_F1)

However, the lack of family involvement can exacerbate feelings of isolation and hinder self-management.

No one will help us. We have to do our work. If I ask for help from my husband, he will scold me. (P1_FGD_ F1)

Family support, hence, not only alleviates the physical challenges of self-care but also enhances participants’ confidence in adhering to MMDP routines.

Gender dynamics in family support: Gender dynamics often determine the nature of family support received by the participants to a great extent. Given the stereotypes associated with gender roles, female patients are often deprived of care and support from their spouse and immediate family, which can impact their MMDP practices. For instance, a female patient stated how she got little help from her husband in practising MMDP.

If I ask for help from my husband, he will scold me and ask me to do it myself. It would have been better if I had a daughter. (P1_FGD_F 1).

They remain responsible for the household chores even during acute illness episodes, which significantly affect the MMDP practices.

Even when the wife is ill, she is responsible for completing all the household work. (P3_FGD_F2)

In many societies, women are primarily responsible for domestic chores. These activities often involve exposure to water, prolonged standing, and other conditions not conducive to maintaining hygiene. Women’s roles as homemakers leave them with little time to focus on their own health needs.

The doctor told me the intertrigo problem is due to moisture being retained between the toes. But with all my household activities I have to do, it is impossible to keep the feet always dry. (P3_FGD_F1).

Conversely, some male participants noted their reliance on wives for support, though they acknowledged the strain this placed on their partners.

My wife said, ‘Disease has caught us, we should not worry... We shall take care of it.’ She is my strength. (P5_FGD_M 2).

Community and peer support: While social support is often seen as a facilitator of health management, community and peer interactions can sometimes act as barriers to MMDP practices. Societal stigma, discriminatory attitudes, and lack of understanding discourage consistent self-care routines. For instance, a participant from the FGD commented that he avoided wearing bandages in public.

If I wear a bandage in public, everyone looks at me and passes comments, so I prefer not to wear it when I go out. (IDI_7_M).

Such experiences create emotional barriers, discouraging individuals from practising visible MMDP activities. However, on the other hand, a supportive peer group can facilitate better emotional support and, thereby, better self-care. For instance, a participant commented that the support from her peer group helped her overcome her stress and made her life better.

I am going to work to avoid my stress. I have a good workplace. People there are like a family, we share our thoughts, laugh together, have lunch together… They understand me. Everyone has their problems and we support each other. I have faced all the bitterness of my life with the support of good friends there. (P6_FGD_F2).

Coping.

Coping strategies among individuals living with lymphatic filariasis significantly influence their MMDP practices. While positive strategies can enhance adherence, maladaptive approaches often act as barriers.

Positive Emotional Coping: Many participants adopted positive emotional strategies to maintain resilience and focus on MMDP. This involved reframing their condition and drawing emotional strength from support systems. For instance, a participant from the FGD commented how accepting his condition helped him improve self-care.

Now I understand that we have to take care of ourselves. We should not think about how others judge and make comments about us. (P3_FGD_M1).

Another participant from the focus group discussion commented how staying positive helped him with the management of the disease.

Initially, I was worried about how people would see me, but now I understand that this thought is killing me. It’s better not to dwell on it. (P6_FGD_M2).

Social Support as a Coping Mechanism: Social support plays an essential role in coping with the challenges of managing their condition and adhering to MMDP practices. The presence of supportive family members and community networks fosters psychological resilience, enabling individuals to manage the burden of the disease more effectively. For instance a participant commented how her granddaughters helped her cope with the disease.

I spend my time with my four granddaughters. They make me happy and help me forget about the disease. (P5_FGD_F2)

Another participant from the FGD narrated how support from the family is a key psychological component that improves resilience.

My son massages my legs, and I am happy that my family doesn’t avoid me. It gives me the strength to manage this. (P1_FGD_M2).

Resignation and Fatalism: Resignation and fatalism can be pervasive and can hinder the motivation to engage in self-care practices, seek support, or pursue medical interventions, resulting in a further decline in health and well-being. For instance, some of the participants displayed a sense of resignation, which had a significant impact on their motivation to practice MMDP.

I don’t apply the bandage because it doesn’t seem to make a difference, and anyway … I feel too tired to do it regularly. (P3_FGD_F2).

Similarly, some participants resort to a sense of resignation, ignoring self-care. For instance, a participant from the FGD stated his efforts were futile, making him leave matters to fate.

Even though I properly dry my legs, I am suffering from intertrigo … So I gave up on paying attention (P6_FGD_M1).

Resignation and fatalism severely impact MMDP practices. These attitudes—often rooted in prolonged suffering, lack of social support, and a sense of helplessness—can lead to low motivation.

Anxiety and depression.

Anxiety and depression are common emotional responses among individuals with LF, significantly influencing their adherence to MMDP practices. Anxiety and depression due to LF is associated with multiple factors, of which some of the key aspects narrated by the participants of this study are listed below:

Withdrawal and Avoidance: Anxiety and shame about visible lymphedema often lead individuals to withdraw from social interactions. This withdrawal can hinder engagement in MMDP practices, such as attending clinics or wearing bandages. For instance, a participant from the FGD stated how anxiety about being discriminated against prevented him from travelling.

Even a thief walks on the road without fear. But we are hiding our legs and walking like a thief due to fear of discrimination. (P6_FGD_M 2).

Avoidance can have a dual impact, leading to weakened social support networks and reduced medical follow-ups, both of which adversely affect the patient’s well-being and care outcomes.

Sense of Hopelessness: A sense of hopelessness, driven by the chronic nature of the disease, undermines participants’ willingness to adhere to MMDP. This resignation often stems from the belief that their efforts are futile in halting disease progression. For instance, a male participant stated how he feels depressed about his condition leading to hopelessness and poor MMDP practices.

I feel lonely and don’t think there is any point in washing or bandaging my legs daily. Nothing changes. (IDI_8_M).

This leads to neglect of MMDP practices, accelerating disease progression and further reinforcing the cycle of hopelessness.

The analysis of the data from the qualitative phase following the SeMaS framework shows that MMDP practices among LF patients are highly shaped by Perceived Burden, Locus of Control, Self-Efficacy, Social Support, Coping, and Anxiety and Depression. By addressing these domains systematically, health interventions can empower patients to adhere to MMDP practices effectively.

An adjusted analysis of the factors associated with morbidity management and perceived burden scores is presented in Table 4. The morbidity management score was found to be significantly high in the employed participants including pensioners (β = 2.14; 95% CI: 0.66, 3.63; p = 0.005), low with advancing grade of lymphedema, Grade 4 (β = -2.92; 95% CI: -4.40, -1.44; p < 0.001). The perceived burden scores were significantly lower in the elderly(>60 years), β = -1.62; 95% CI: -2.18, -1.07; p < 0.001, and higher in females (β = 0.85; 95% CI: 0.16, 1.54; p = 0.015), patients with bilateral disease (β = 1.30; 95% CI: 0.65, 1.95; p < 0.001), Grade 3 lymphedema (β = 1.55; CI: 0.87-2.23; p < 0.001) and Grade 4 lymphedema (β = 2.99; 95% CI: 2.32, 3.65; p < 0.001).

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Table 4. Factors associated with morbidity management score and perceived burden.

https://doi.org/10.1371/journal.pntd.0013903.t004