Perception of Leprosy Patients towards the Disease in a Tertiary Care Hospital of High Prevalent District in West Bengal, India: A Qualitative Study.

Background: Leprosy is a disease having tremendous social implications due to ostracization. Despite continuous efforts made so far to eliminate leprosy, stigma/misbeliefs/adverse attitude toward leprosy still prevails among common people. Community perceptions and attitudes towards leprosy patients are critical and unique indicator of how society stereotypes leprosy. Aims: The qualitative study was conducted to explore the perceptions of leprosy patients towards leprosy. Materials and
Methods: Two focused group discussions (FGDs) with 19 newly-diagnosed leprosy patients who can speak vernacular were conducted with help of a predetermined FGD-guide between April and June 2019 in the dermatology out-patient department of the tertiary-care center. Both FGD sessions were recorded, transcribed, and translated into English. These verbatims were thematically analyzed and emerging themes were identified with illustrative quotations. Free list and pile sort data obtained were analyzed by Visual Anthropac version 1.0 software for Smith's salience value Cognitive mapping with two-dimensional scaling and hierarchical cluster analysis.
Results: Small size of wound, not giving importance, failure to realize, bad luck and scared of being isolated etc., were the most common reported perceptions. Overall, five themes emerged after pile sorting, namely ignorance about the disease, stigma and economic burden, positive perception after diagnosis, treatment-related suggestions, and myths and frequently asked questions.
Conclusion: The study concludes that more IEC campaigns are required to abolish the stigma; and ASHA workers/front-line workers can play a pivotal role. The program (NLEP) can also utilize the role of satisfied cured-patient as peer-educator to improve the attitude of society towards this disease. Copyright:

Introduction

Leprosy is a disease having tremendous social implications due to ostracization. Despite continuous efforts made so far to eliminate leprosy, stigma, misbeliefs, adverse attitude toward leprosy are still prevalent among common people of developing countries, including India.[12] Though knowledge is an important factor, social and cultural pressures influence decision-making in the treatment-seeking behavior of those affected.[3] The social stigma and ignorance attached to it have made it difficult for the healthcare delivery system in its pursuit of early diagnosis and prompt treatment.[4]

Similar concerns were expressed in different studies conducted in different states of India and outside. A study conducted in an urban slum of Delhi revealed that myths and beliefs such as “leprosy can occur spontaneously,” “due to past sins,” “curse of God,” and “hereditary” were still prevalent among patients and their relatives.[1] As per the latest figures, India contributed to 127,326 (almost 60%) of the global total of 210,758 new cases in 2015.[5] Understandably, if social stigma is added to this huge population, the crisis will be compounded furthermore. Visible deformity in leprosy patients is still attributed as the biggest culprit for social stigma and taboos. Although leprosy can be medically cured completely, still it is difficult to bring immediate removal of stigma attached to disease particularly in a holistic society like India.

Community perceptions and attitudes toward those patients affected with leprosy are critical and unique indicators of how society stereotypes leprosy. Community stigma toward leprosy-affected persons has the potential to impact various areas of their lives, including marital life, professional endeavor, social acceptance, and interactions.[6]

To maximize the effectiveness of health programs related to leprosy eradication, they need to assess the current status of perception of leprosy patients influencing their attitude, behavior, and practices about the disease which has remained as the most stigmatized disease since ages. Their treatment-seeking behavior must also be assessed to find the hurdles that prevent them from early management.

In this context, this qualitative study was conducted to assess the care-seeking behavior of leprosy patients and to explore their perception toward the disease. The present study has important implications for developing control strategies to identify the target areas to direct the counseling effort.

Materials and Methods

This study was conducted from April 2019 to June 2019 among newly diagnosed adult leprosy cases attending Dermatology outpatient department in a rural-based tertiary care hospital situated in the high prevalent district of West Bengal, India. Ethical clearance was obtained from the institutional ethics committee, and informed consent was obtained from each respondent. Participants were assured regarding anonymity and confidentiality of their responses.

Patients who were unwilling and unable to speak in local vernacular were excluded from the study. Thus, out of 24 newly diagnosed leprosy patients in the reference period, finally, 19 patients were recruited (five patients were unable to speak in local vernacular).

Background characteristics of leprosy patients were collected with a semi-structured schedule. Two focus group discussions (FGDs) involving 19 study subjects who fulfilled eligibility criteria were conducted to explore perceptions towards the disease. One FGD session was conducted with 11 male leprosy patients and another FGD with eight female leprosy patients with the help of a predetermined FGD guide composed of some guiding questions. There was a moderator for conducting the discussion and a recorder to note down the proceedings. FGDs were conducted at the dermatology department of the tertiary care hospital. Participants were asked to sit in a semi-circular manner so that each one of them is in the view of the others. A predetermined logical sequence of open-ended questioning was done to stimulate discussion among the participants to understand their perceptions, treatment-seeking behavior, whether faced any stigma, etc. Participants were posed with questions in a neutral manner; their responses were heard attentively, and if necessary, follow-up questions were asked. There was no leading question, and participants were not shown approval or disapproval of what they said. Complete proceedings of the FGD, including the level of participation and sociogram, were noted; it revealed an equal level of participation among the respondents. These sessions were electronically recorded, and each lasted for not more than 30 min.

Data collection and statistical analysis

After each FGD, data including all field notes and recorded audio were transcribed and translated from local vernacular into English, close to verbatim on the day of data collection. All researchers then coded interview transcripts separately, and any discrepancies in the coding were sorted out following exhaustive discussion. These coded notes were thematically analyzed and emerging themes were identified with illustrative quotations. Statements in italics indicate direct quotations from the participants.

Finally, free listing using “Smith's salience value” and “pile sorting exercise” were conducted. In the pile sorting exercise; perceptions were clubbed by the researchers individually which they feel goes together. The data were analyzed using Visual Anthropac version 1.0 software.[7] To get the collective picture, two-dimensional scaling and hierarchical cluster analysis of pile sort data were undertaken. Debriefing of the findings of free list, pile sorting, and FGD to the participants was done to increase the credibility of the results.

Results

Background characteristics

A total of 19 study subjects participated in the FGD out of which 11 were male. The mean age of the patients was 42 ± 12.1 years (median: 40 years, interquartile range: 34.2–53.5 years). The majority of the study subjects were from rural areas (84.2%) and belonged to below poverty line (94.7%). Our study population mostly comprised people who were deprived of formal education. Among 19 participants, only seven (36.8%) participants were literate, and of them, one had passed 12th standard, three passed 10th standard, one passed 8th standard and two had passed 5th standard. Among 19 study subjects, 12 were borderline tuberculoid, three were borderline lepromatous, and four were lepromatous leprosy cases. One respondent was found to have a disability.

Overall, two FGD were conducted among leprosy patients to explore perceptions toward the disease. According to them, the major symptoms of leprosy were hypopigmented patches, numbness, blisters, pain in lower limbs, wound on the feet, etc., Some of the major areas identified were as follows:

Care-seeking behavior

Very few of the patients had consulted a healthcare provider within 7 days of appearing of symptoms. Most of them either could not recognize initial symptoms or did not give importance or local unqualified practitioners could not identify the disease and thus treatment got delayed by up to 6 months. One patient said that “I thought this will be cured, so didn’t consult doctor initially.” Another respondent told that “I had consulted local quack initially, but he couldn’t identify the disease. Hence the diagnosis got delayed.” The majority of the patients had consulted local quacks or health centers initially and subsequently either got referred or visited the tertiary care center for treatment.

Awareness gap

Lack of knowledge was found among the patients regarding the cause of leprosy. One respondent told, “God has given curse to me.” Another patient said that “I have contracted from relatives as they have the disease.” Even one of the leprosy patients told that “My grandfather was having the disease; so, it is hereditary.” A very few patients cited viruses or bacteria or pathogens as the causative agent behind leprosy.

Perceptions regarding mode of transmission

Similarly, incorrect knowledge was there among most of the patients regarding the mode of transmission of the disease. Respondents were of opinion that leprosy is a hereditary disease, or it might be transmitted through food, water, direct contact with the leprosy patients, or sharing soaps, utensils, and handkerchiefs from patients.

Stigma

Stigma was prevalent according to the respondents. Some were advised to stay separately by their family members as this disease will not be cured. Some of the respondents were apprehensive about losing their job. One of the study subjects said that “if society knows that I am suffering from leprosy, nobody will marry me.” Another respondent told that “if villagers get to know I have leprosy, then they might prevent me from using pond or tube-wells.”

Positive outlook of patients

Patients said that this disease will be cured if regular treatment is taken. Respondents also told that they will ask persons with similar symptoms to attend the nearest health center or hospital. They also reported that there may be a disability if medication is discontinued. According to the respondent, rehabilitation is also possible if the intervention is early but they were unaware of the rehabilitation centers.

Information education and communication (IEC)

Everyone has seen IEC activities on leprosy, especially through mass media, ASHA workers, posters, health centers, etc., though they all opined that more campaigning will be better. They said that “if the ASHA were more trained then they would identify the disease more easily.”

Economic burden

Out-of-pocket expenditures, like loss of wages, travel expenses, etc., to avail treatment from a tertiary center is an issue for the majority of the patients. One patient with lepra reaction said that “If I get treatment from a local health center, then it would be more beneficial.”

Free listed items (with Smith's S value) of perceptions among patients are presented in Table 1. Perceptions with a higher Smith's salience score were more frequently reported by the respondents. Subsequently, five themes emerged after pile sorting: ignorance about the disease, stigma and economic burden, positive perception after diagnosis, treatment-related suggestions, and myths and frequently asked questions [Table 2]. The two-dimensional scaling and hierarchical clustering of the pile sort data showed the collective picture of the inductive thematic analysis of perceptions toward leprosy [Figure 1].

Table 1

Relative ranking of perceptions given by respondents

Item	Smith’s Salience Score
Small size of the wound on feet	0.716
Did not give importance	0.684
Failed to realize	0.590
Bad luck	0.534
Scary of being isolated	0.460
Care seeking should be done	0.428
Concealing the disease	0.335
It will be cured	0.320
Economic loss	0.300
Problem will happen in marriage	0.294
Curse of the elderly	0.287
Avoidance of patient	0.282
Treatment of small duration	0.256
ASHA should be educated	0.238
More campaigning needed on TV	0.228
Feeling bad	0.209
Hereditary	0.200
Eating same food sharing clothes beds	0.196
Can a patient work?	0.143
Transfer fees reimbursement	0.122
Can a patient eat with people together?	0.120
Can a patient bath?	0.048
Will deformity be cured?	0.041

Table 2

Pile sorting of perceptions given by leprosy patients and relatives into themes

Pile number	Theme	Perception of causation of leprosy and its consequences	Reasons for grouping
1	Ignorance about the disease	1. Did not give importance	Directly related to lack of knowledge and awareness gap of the patients before diagnosis
		2. Failed to realize
		3. Small size of the wound on feet
		4. Bad luck
		5. Curse of the elderly
		6. Hereditary
2	Stigma & economic burden	1. Scary of being isolated	Directly related to the negative perception and social impact of the disease after diagnosis
		2. Concealing the disease
		3. Feeling bad
		4. Avoidance of patient
		5. Problem will happen in marriage
		6. Economic loss
3	Positive perception after diagnosis	1. It will be cured	Directly related to the positive perception after diagnosis to come out from prejudices
		2.Care seeking should be done
		3. More campaigning needed on television
		4. ASHA should educate about the disease
4	Treatment-related suggestions	1. Transport fees reimbursement	Directly related to suggestions on improvement of management
		2. Treatment of shorter duration
5	Myths & Frequently asked questions	1. Eating same food, sharing same clothes and foods	Directly related to queries
		2. Can a patient work?
		3. Can a patient take bath?
		4. Can a patient eat with other people together?
		5. Will deformity be cured?

Figure 1

Cognitive map with two-dimensional scaling and hierarchical cluster analysis of perceptions among leprosy patients. 1. Did not give importance 2. Failed to realize 3. Small size of the wound on feet 4. Bad luck 5. Curse of the elderly 6. Hereditary 7. It will be cured 8. Care seeking should be done 9. Scary of being isolated 10. Concealing the disease 11. Feeling bad 12. Avoidance of patient 13. Problem will happen in marriage 14. More campaigning needed on television 15. ASHA should educate about the disease 16. Transport fees reimbursement 17. Treatment of shorter duration 18. Can a patient work? 19. Can a patient take bath? 20. Can a patient eat with other people together? 21. Economic loss 22. Will deformity be cured? 23. Eating same food, sharing same clothes and foods

Discussion

The study revealed that leprosy still has the cloud of misinformation and misconception shrouding the perception of people affected with leprosy as well as their caregivers at home. The lack of awareness leads to delay in seeking treatment. Inability to perceive that a small wound on pressure point needs to be recognized as a tell-tale sign of leprosy is lacking in the minds of people. The failure to realize the early signs of leprosy is a direct consequence of the inadequate information-education-communication (IEC) about leprosy in the community. The study participants also stressed the need for a more extensive campaign through mass media (e.g., television). Our study population mainly comprised illiterate people whose awareness of the disease depended mostly on the IEC. The participants expressed their faith in the accredited social health activists (ASHA) and reiterated that ASHA workers can spread information about leprosy to the community. This is an important observation that can open up newer avenues for the IEC campaign, and the faith in local people highlights the role of peer-educator in spreading awareness. Similar observation on the significance of ASHA workers was also noted in another qualitative research carried in the low and high prevalent districts of West Bengal, India.[3] The ideations about the “curse of the elderly,” “bad luck,” and “heritable nature of the disease” are still prevailing in society and need to be dispelled through repeated counseling and community education. Various questions lurk in the minds of patients and their relatives which need to be addressed by proper IEC. The questions mostly relate to the contagious nature of the condition and the fear related to working in the same place, wearing the same cloth, eating together, etc., needs to be allayed. Community education that takes cultural beliefs, knowledge gaps, and fears has been found to be useful in qualitative research conducted in eastern India.[8]

The study unveiled the stigma that is still prevailing in society and which compels the person to conceal the disease. The fear of being rejected by society imparts a sense of fear in the patients. The fear of losing job and fear of getting refused in marriage is persisting even in this 21st century. We have eliminated it as a public health problem in terms of numbers (reducing the prevalence to less than 1/10,000), but definitely, it is a long way to go before it is eliminated as a social disease. Despite the existing grim situation regarding the stigma, the positive perception about the treatment and the trust that leprosy can be cured by its treatment is the ray of optimism that fades the dreary state of affairs. The patients are convinced after being treated that care-seeking is important; thus, it raises hope that their word-of-mouth will spread confidence in others. Despite the credence of the medicine, the participants expressed their displeasure over the long course of treatment.

The NLEP has arranged for local dispensing of the drugs from the nearby primary health center, but at times, expert opinion has to be sought and referral to a higher center is required. In such situations, the transport cost becomes a burden for many and becomes a hurdle in early diagnosis and management. The participants expressed their desire for reimbursement of transportation fees, which the program can look into and decide upon. The program can also think of arranging for transportation in such cases to tackle the issue. The study noted that participants were concerned about the deformities and were unsure whether the deformities can be reversed. The influence of deformity on the quality of life was also identified in a questionnaire-based cross-sectional study in Ahmadabad, India[9] and in the Lalitpur district of Nepal.[10] The role of reconstructive surgery is paramount in this situation and would help in restoring the faith that deformities will not come in the way of recovery.

Limitation: As the study was conducted in a tertiary care hospital, the information derived may not reflect the situation in a secondary or primary care level hospital. In the present FGD, variation of perception of the patients according to the types of leprosy was not explored, and this may be planned in future studies.

Conclusion

The study concludes that more IEC campaigns are required to abolish the stigma that is still prevalent in society, and ASHA workers/front-line workers can play a pivotal role in this situation. Educating the community regarding the early symptoms of leprosy can help in early diagnosis, and monetary reimbursement of any fees incurred for transportation/arranging for transportation to higher centers can aid in early detection and management. The program can also think of utilizing the role of satisfied cured patients as peer-educators and thus improve the attitude of the society toward this disease.

Declaration of patient consent

The authors certify that they have obtained all appropriate patient consent forms. In the form, the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.