Journal of Public Health in Africa 2011; volume 2:e10

Social stigma as an epidemio- lack of self-esteem, tribal stigma and complete rejection by society. From the 480 structured Correspondence: Dr. Dickson S. Nsagha, logical determinant for questionnaires administered, there were over- Department of Public Health and Hygiene, elimination in all positive attitudes to lepers among the study Medicine Programme, Faculty of Health Sciences, population and within the divisions (P=0.0). University of Buea, PO Box 63, Buea, Cameroon. Dickson S. Nsagha,1,2 The proportion of participants that felt sympa- Tel. +237. 77499429.E-mail: [email protected] [email protected] Anne-Cécile Z.K. Bissek,3 thetic with deformed lepers was 78.1% [95% 4 confidence interval (CI): 74.4-81.8%] from a Sarah M. Nsagha, Key words: leprosy, , attitudes, elim- Anna L. Njunda,5 total of 480. Three hundred and ninety nine ination, Cameroon. Jules C.N. Assob,6 (83.1%) respondents indicated that they could Earnest N. Tabah,7 share a meal or drink at the same table with a Acknowledgements: the authors are grateful to Elijah A. Bamgboye,2 deformed leper (95% CI: 79.7-86.5%). Four Mr. Nsagha BN, Mr. Nsagha IG and Late Papa hundred and three (83.9%) participants indi- James Nsagha, who sponsored this study. The Alain Bankole O.O. Oyediran,2 cated that they could have a handshake and authors also thank Mr. Agyngi CT & Mr. Ideng DA Peter F. Nde,1 embrace a deformed leper (95% CI: 80.7- of the Benakuma Health Center; Mr. David Alfred K. Njamnshi3 87.3%). A total of 85.2% (95.0% CI: 81.9-88.4%) Nfiekwe, Mr. Abel Sande, Mr. Ngam, Dr 1Department of Public Health and participants affirmed that they could move Zimmermann R of the Mbingo leprosarium, Dr. Jerry Fluth of the Health Services of the Hygiene, Faculty of Health Sciences, with a deformed leper to the market or church. Cameroon Baptist Convention and Nwabang University of Buea, Cameroon; A high proportion of 71.5% (95.0% CI: 67.5%- Caessian of for data collection. 2Department of Epidemiology, Medical 75.5%) participants stated that they could offer Statistics and Environmental Health a job to a deformed leper. The results indicate Conflict of interest: the authors report no con- (Formerly Department of Preventive and that division had the lowest mean flicts of interest. Social Medicine), Faculty of Public score of 3.3 on positive attitudes to leprosy compared with (4.1) and (4.8) Received for publication: 1 December 2010. Health, College of Medicine, University Accepted for publication: 20 January 2011. of Ibadan, Nigeria; divisions. only The high proportion of positive attitudes 3Department of Internal Medicine and This work is licensed under a Creative Commons among the participants and in different divi- Attribution 3.0 License (by-nc 3.0). Specialties (Dermatology and sions is a positive indicator that the elimina- Neurology), Faculty of Medicine and tion of leprosy social stigma is progressing in ©Copyright D.S. Nsagha et al., 2011 Biomedical Sciences, University the right direction. Quantification of stigmause to Licensee PAGEPress, Italy Journal of Public Health in Africa 2011; 2:e10 of Yaounde 1, Cameroon; assess the elimination struggle is a new 4 doi:10.4081/jphia.2011.e10 Department of Educational Psychology, research area in public health. Faculty of Education, University of Buea, Cameroon; disease itself by leprosy patients.11 Leprosy is 5Department of Medical Laboratory still a public health problem in Essimbiland of Sciences, Faculty of Health Sciences, Introduction Cameroon even though the country has University of Buea, Cameroon; attained the elimination threshold set by the 6Department of Biomedical Sciences, Leprosy has been described as a neglected WHO.12 In this study we investigated the role University of Buea, Cameroon; tropical disease and social killer because it of social stigma as a determinant for leprosy 7National Programme for Leprosy, Buruli causes , has economic implications elimination in this endemic focus in Ulcer and Yaws Control, Ministry and results in compared with Cameroon. of Public Health, Yaounde, Cameroon other diseases like malaria that are serial killers.1 Goffman2 has provided the most wide- ly accepted definition and description of stig- ma referring to bodily signs designed to Materials and Methods Abstract Non-commercialexpose something unusual or bad about the moral status of the signifier. Stigma itself is a Study area Leprosy has been eliminated as a public complex issue, with the capacity to affect all The study area and methods have been 3 health problem in most countries of the world facets of a leprosy-affected person's life. described elsewhere in detail.12 Briefly, the according to the WHO, but the social stigma to Many examples of social exclusion are avail- participants were drawn from Boyo and 4-7 the disease is still very high. The present study able in the literature. Menchum divisions of north-western was performed to investigate the role of social Today, leprosy is clinically cured relatively Cameroon because they had the highest preva- stigma as a determinant for leprosy elimina- easily, yet, the effects that it has on a patient's lence of leprosy (3.4/10,000 and 4.5/10,000, tion in a leprosy endemic region of Cameroon. life can carry on indefinitely.3 The stigmatising respectively).13-15 These divisions still have the Focus group discussions, in-depth interviews condition can lead to the person affected being highest leprosy prevalence (1.7/10,000 for and structured questionnaires were used to rejected and excluded from society.8 In the past Menchum and 2/10,000 for Boyo) in the North investigate leprosy social stigma among lep- two decades effective treatment has reduced of Cameroon.16 In Boyo division, ers, their contacts and a control group consist- leprosy prevalence in the world.9,10 However, the study was concentrated in the Mbingo lep- ing of patients attending a health facility for the number of people living with its effects is rosarium and surrounding villages and in reasons other than leprosy. Informed consent counted in millions and still remains Menchum division, it was concentrated in was sought and gained prior to starting the a burden to those affected which directly or Benakuma and surrounding villages of study. Focus group discussions and in-depth indirectly affect its elimination. Leprosy social Essimbiland. This study was conducted from interviews identified three types of stigma: stigma has been described as worse than the June 1998 to October 2002.

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Design and setting was administered to all 480 respondents. rejection by society. Majority of contacts The study was a descriptive observational Those who could read or write the English lan- shunned interactions that could entail person- case-control study that was community-based guage filled the questionnaire and those who to-person contact especially with deformed in one low (Mezam division) and two high could not were communicated to through an patients. Most contacts said they could tolerate (Menchum and Boyo divisions) leprosy-preva- interpreter in Bikom and Essimbi dialects. handshake with a leper. Only few contacts lent areas. Leprosy patients constituted the The questionnaire contained socio-demo- accepted the idea of marrying a leper. The FGD cases and the contacts were a high-risk group graphic variables on age, sex, marital status, views of the participants on the social stigma for developing leprosy. The control group con- religion, geographical location and profession. of leprosy are presented in Table 1. Among the sisted of patients attending a health facility for Attitudinal questions on social stigma of lep- graphic comments made on the social stigma reasons other than leprosy. Leprosy patients, rosy constituted the dependent variables. to leprosy by contacts, the following was perti- their contacts and controls were matched for nent and frequently mentioned. geographical location, age and sex. Ethical approval and clearance “There is rejection and people despise them The authorization to carry out the work was because they cannot contribute to the develop- Inclusion and exclusion criteria for obtained from the Cameroonian Ministry of ment of the society; they lack proper lodging”. leprosy patients, contacts and controls Public Health (Nº D76/A/MSP/SESP/SG/DRH/ All community-based rehabilitation workers (contacts of patients) commented that social All intra-familial contacts (wife, children SDGP/SFS). Informed consent was obtained from all respondents before discussions/inter- stigma was a stumbling block to leprosy elimi- and other relatives) and extra-familial con- nation as expressed in the following com- tacts (friends, peers, colleagues and villagers) views were conducted, questionnaires admin- istered and from the patient whose picture is ments. were involved in the study. Controls were those “The leprosy patient rejects his/herself first who attended the Bamenda Hospital in Mezam presented. by shying away from people and sitting at cor- division for reasons other than leprosy who ners in gatherings, followed by the family and were selected based on a well-structured, guid- Data management and analysis the community”. ed questionnaire; those who either live or lived The audiotapes from FGDs and IDIs were “There are 13 villages in my area. These vil- with a leper in the same household or quarter replayed and transcribed, and the different lages have their traditional taboos. In some, were eliminated from the study. responses to the questions on social stigma theonly patients are rejected in “Manjong” houses were analysed manually using a code tree. (Manjong is a social gathering), they don’t Content and construct validity were checked Selection techniques for focus drink from the same pot with others. This hap- to ensure the validity of transcribed FGDs by group discussions, in-depth inter- pens to treated and untreated patients. They comparing the transcribed notes with written use cannot play the drum and dance well”. views and structured questionnaire notes taken during FGDs. Relevant com- All participants expressed the views that Nine focus group discussions (FGDs) [5 ments on social stigma were analysed. social stigma to leprosy was high in their with contacts and 4 with cases] and 6 in-depth Similar views on each discussion item were places of origin. Among the leprosy patients interviews (IDIs) [3 with contacts and 3 with grouped separately from dissimilar ideas. involved in FGDs, it was unanimously accepted cases] were conducted using a guide to gath- Discussions on topics with many dissecting that society had positive attitudes towards er information on leprosy social stigma and to views were presented in the form of graphic them compared with the past years of the 50s fine-tune the structured questionnaire. The comments. and 60s when social stigma was very high. participants in the FGDs were purposively Each time the questionnaires were 17-19 chosen in which minigroups of 4 to 8 from brought from the field, they were checked for the target population discussed topics on lep- unanswered questions and edited for the use In-depth interviews among leprosy rosy social stigma. The groupings were based of correct codes and completeness, including patients, contacts and controls on the profession, literacy, and social status of range and consistency errors. The structured Social stigma among lepers participants. Direct interviews were conduct- questionnaire data were analyzed using Epi- ed in Pidgin English, English language and Info after a double entry by two data clerks. During IDIs, it emerged that social stigma the Bikom dialect with the help of a trained Data summary such as proportions and per- was deeply rooted in the study area among interpreter. In all FGDs, the lead author acted centages and testing of the working hypothe- non-lepers. However, the lepers expressed the as the moderator and trained internshipNon-commercial stu- sis were also carried out using the chi-square views that society was having positive atti- dents acted as note-takers. All the FGDs and and Fisher exact tests for tests of signifi- tudes towards them. Among the non-lepers the IDIs were recorded on audiocassette tapes. cance of association between categorical following pertinent comments were frequently The purpose of taping the interviews was variables. The working hypothesis was that mentioned: explained to the participants and their con- attitudinal questions on social stigma were “These patients are looked upon as second class citizens. forces some sent obtained before this was done. The notes not going to vary among the study and the patients to do certain activities just to look like and replayed cassettes were transcribed after control groups and within the divisions. the interviews. The list of patients was normal people, which results in further defor- obtained from health facilities. The patients mities. Some, who came to the leprosy colony in different villages assisted in the identifica- for treatment, had their property seized. tion of other patients whose names were not Results Normal people cannot marry them. However, in the registers. In the leprosarium, all avail- social stigma is decreasing now. If somebody is able leprosy patients on treatment, those dis- treated of malaria, there is no reason to con- charged and living within the neighbouring Focus group discussions among tinue calling him/her a malaria patient for life. villages, including those rehabilitated, were leprosy patients, contacts and controls Why then with leprosy? When a heavy wind involved. After identifying 138 leprosy It was gathered from FGDs that there were blows down a plantation stem, after the wind patients, 180 contacts and 162 controls were three types of social stigma, which vary from the stem cannot stand up. We cannot say that recruited for the study. A partly open and lack of self-esteem (self stigma) among the the wind is still blowing. Why should we keep closed pre-tested structured questionnaire leprosy patients, tribal stigma, and complete on calling these people leprosy patients?

[Journal of Public Health in Africa 2011; 2:e10] [page 39] Article

Deformities are like scars of any wound”. Leprosy determinants from struc- three (83.9%) participants accepted that they “Social stigma used to be very high but now tured questionnaire among leprosy could have a handshake and embrace a many patients who are discharged live, play deformed leper (95% CI: 80.7-87.3%). Four hun- and dance well in society”. patients, contacts and controls dred and nine, corresponding to 85.2% of total The significant findings on attitudes to lep- The lepers unanimously agreed that the atti- participants [95.0% CI: 81.9-88.4%], accepted rosy among lepers, contacts, and controls are tude of society towards them was improving as that they could move about with a treated but shown in Table 2. The proportion of partici- expressed in the following comment: “All chil- deformed leper to a public place (market or pants that indicated that they felt sympathetic dren born in NewHope village are married to church). More intra-familial than extra-famil- with deformed lepers was 78.1% (95% CI: 74.4- government officials and none of them has lep- ial contacts (85.9% vs. 52.8% respectively) 81.8%). There was no statistically significant rosy; we interact with people freely”. accepted that they could move with a treated relationship between the feelings of intra- but deformed leper to a public place (P=0.3). familial and extra-familial contacts towards Three hundred and forty three (71.5%) partici- Social stigma among non-lepers deformed lepers (P=0.8). Three hundred and pants accepted that they could offer a job to a It emerged from the study that social stigma ninety-nine (83.1%) respondents accepted that deformed leper [95.0% CI: 67.5-75.5%]. The to leprosy was high in the study area among they could share a meal or drink at the same summary statistics on attitudinal questions on non-lepers which can hinder the effective table with a deformed leper (95% CI: 79.7- feelings, sharing a meal or drink, movement to elimination of the disease. Three types of stig- 86.5%). There was no statistically significant public places, handshake and job offer to treat- ma were identified-first, the patient rejecting association in the attitude of sharing a meal or ed but deformed lepers is shown in Table 3. himself because of lack of self-esteem, and a drink at the same table with a treated but Lepers and controls had higher mean scores secondly, the repulsive attitude of the society deformed-leper among intra-familial and extra- than contacts for these determinants. to the patient. familial contacts (P=0.4). Four hundred and

Table 1. Interactions with respect to the social stigma of leprosy expressed by leprosy patients, contacts and controls during focus-group discussions. Interactions encouraging Category of participants who Examples of factors leading to similar behaviours social stigma expressed similar views only Lack of self-esteem Contacts People despise lepers because they cannot contribute to development (patients shy away by themselves) of society; leprosy patients are poor; lepers lack accommodation; patients sit at cornersuse in gatherings Cultural taboos Contacts Leprosy is caused by past bad behaviours, witchcraft, or gods of the land are angry with one; patients are rejected in some social gatherings like “Manjong” houses Shunning physical and social contacts Contacts Scared by deformities of the patient; cannot tolerate handshake; insults and slants from society when lepers ask for help; cannot marry somebody treated of leprosy; cannot go to cinemas or stadiums with lepers; scared when lepers sleep with open eyelids. Interactions discouraging Category of participants who Examples of some factors that lead to such behaviours social stigma expressed such views Greetings Contacts Visit a leper in their village; eating with lepers; embrace lepers; play games like football and cards with lepers. Other positive attitudes from society Lepers Greet lepers by handshaking and ask about their work and family. Lepers attend the same church with other villagers; male leprosy patients marry normal women and vice versa; lepers exchange gifts like pineapple, sugar cane, baskets, with normal people; people freely come to the leprosarium to visit lepers

Table 2. Comparison of attitudes Non-commercialto lepers among leprosy patients, contacts and controls. Question Attitudes to leprosy Total Leprosy patients Contacts, Controls c2 P n=480 n=138 n=180 n=162 (%) (%) (%) (%) Feelings about deformed lepers Sympathetic 375 (78.1) 123 (89.1) 118 (65.6) 134 (82.7) 38.4 0.0 Not sympathetic 105 (21.9) 15 (10.9) 62 (34.4) 28 (7.3) Can you share a meal or drink with a treated but Agreed 399 (83.1) 134 (97.1) 136 (75.6) 129 (79.6) 28.6 0.0 deformed leper at the same table? Disagreed 49 (10.2) 3 (2.2) 25 (13.9) 21 (13.0) Undecided 32 (6.7) 1 (0.7) 19 (10.6) 12 (7.4) Can you shake hands and embrace a treated but Agreed 403 (83.9) 136 (98.6) 144 (80.0) 123 (75.9) 47.2 0.0 deformed leper? Disagreed 55 (11.5) 0 (0.0) 20 (11.1) 35 (21.6) Undecided 22 (4.6) 2 (1.4) 16 (8.9) 4 (2.5) Can you move about to a public place Agreed 409 (85.2) 131 (94.9) 143 (79.4) 135 (83.3) 17.2 0.0 (e.g. market or church) with a treated Disagreed 41 (8.5) 6 (4.3) 19 (10.6) 16 (9.9) but deformed leper? Undecided 30 (6.3) 1 (0.7) 18 (10.0) 11 (6.8) Can you offer a job to a treated but Agreed 343 (71.5) 114 (82.6) 112 (62.2) 117 (72.2) 37.2 0.0 deformed leper? Disagreed 108 (22.5) 9 (6.5) 58 (32.2) 41 (25.3) Undecided 29 (6.0) 15(10.9) 10 (5.6) 4 (2.5)

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The significant findings on attitudes to lep- they could share a meal with a treated but ly significant relationship was established rosy in the three divisions are shown in Table deformed leper (P<0.05). No relationship was between the attitude of moving about with a 4. There was a statistically significant relation- established between the attitude of sharing a treated but deformed leper with age, marital ship between all the attitudinal questions in meal with a deformed leper with religion and status and gender of the respondents in this the three divisions (P=0.0). The summary sta- marital status of the respondents in this study study (P>0.05). tistics of positive attitudes to leprosy shown in (P>0.05). There was no statistically significant rela- Table 5 indicate that Menchum division had Two hundred and forty seven (70.6%) edu- the lowest mean score of 3.3. Despite the high cated participants compared with 22 (16.9%) positive attitudes to leprosy in Boyo and illiterate participants stated that they could Mezam divisions, it was observed that leprosy offer a handshake to a deformed leper (P social stigma is very high in Menchum <0.05). One hundred and twelve (68.7%) farm- (P<0.05). Figure 1 shows a female leprosy ers, 43 (36.4%) students and 13 (14.8%) unem- patient without deformities sent away from the ployed participants indicated that they could village with her children living in the bush. offer a handshake to a deformed leper. No rela- tionship was established between the attitude Variation of attitudes to leprosy of having a handshake with a deformed leper and gender, religion, or marital status of the with the demographic characteris- subjects in this study (P>0.05). tics of the respondents More Christians than participants of other No relationship was established between religions accepted they could move to the mar- the feelings of the respondents when they see ket or church with a deformed leper [393 deformed lepers with religion, educational and (87.5%) Christians vs. 10 (47.6%) other reli- marital status (P>0.05). However, older people gions] (P=0.0). Three hundred and eighteen were less sympathetic with lepers than (90.9%) educated people and 91 (70.0%) illit- younger ones [254 (96.6%) vs. 211(97.2%)] erate participants accepted that they could (P<0.05). Seven (5.1%) leprosy patients indi- move with a treated but deformed leper to a only cated that their separation or divorce from public place (P<0.05). More singles than mar- Figure 1. An active female multi-bacillary their spouse was due to leprosy. Two hundred ried couples [168 (85.3%) vs. 107 (68%)] leprosy patient sent away from home and and forty seven (70.6%) educated people vs. 18 affirmed that they could move with a deformed living with her children on a hill in (13.9%) illiterate participants accepted that leper to a public place (P<0.05). No statistical-use Benahudu village of Essimbiland.

Table 3. Summary statistics of positive attitudes to lepers (feelings, sharing a meal or drink, movement, handshake and job offer to treated but deformed leprosy patients) among lepers, contacts, and controls. Summary statistics of positive attitudes to treated but deformed lepers Category of subject Number of subjects Total scores Mean score Variance Standard deviation Lepers 138 638 4.6 0.9 0.9 Contacts 180 715 3.9 1.7 1.3 Controls 162 666 4.1 1.1 1.1 Analysis of variance for positive attitudes to treated but deformed lepers Variation Sum of squares Degree of freedom Mean square F-statistic P Among groups 35.3 2 17.7 Within groups 613.3 477 1.3 13.7 0.0 Total 648.6 479

Table 4. Comparison of attitudesNon-commercial to lepers in the divisions of the study area. Question Attitudes to leprosy Total Boyo Menchum Mezam c2 P n=480 n=213 n=105 n=162 (%) (%) (%) (%) Feelings about deformed lepers Sympathetic 375 (78.1) 163 (76.5) 78 (74.3) 134 (82.7) 53.3 0.0 Not sympathetic 105 (21.9) 50 (23.5) 27 (25.7) 28 (7.3) Can you share a meal or drink with a treated but Agreed 399 (83.1) 202 (94.8) 68 (64.8) 129 (79.6) 50.8 0.0 deformed leper at the same table? Disagreed 49 (10.2) 3 (1.4) 25 (23.8) 21 (13.0) Undecided 32 (6.7) 8 (3.8) 12 (11.4) 12 (7.4) Can you shake hands and embrace a treated but Agreed 403 (83.9) 201 (94.4) 79 (75.2) 123 (75.9) 43.6 0.0 deformed leper? Disagreed 55 (11.5) 3 (1.4) 19 (18.9) 35 (21.6) Undecided 22 (4.6) 9 (4.2) 7 (6.7) 4 (2.5) Can you move about to a public place Agreed 409 (85.2) 206 (96.7) 68 (64.8) 135 (83.3) 63.3 0.0 (e.g. market or church) with a treated Disagreed 41 (8.5) 0 (0.0) 25 (23.8) 16 (9.9) but deformed leper? Undecided 30 (6.3) 7 (3.3) 12 (11.4) 11 (6.8) Can you offer a job to a treated but Agreed 343 (71.5) 191 (89.7) 35 (33.3) 117 (72.2) 117.2 0.0 deformed leper? Disagreed 108 (22.5) 16 (7.5) 51 (48.6) 41 (25.3) Undecided 29 (6.0) 6 (2.8) 19 (18.1) 4 (2.5)

[Journal of Public Health in Africa 2011; 2:e10] [page 41] Article tionship between the attitude of offering a job ment is left too late to avoid deformity. This is and controls feel sympathetic when they see to a deformed leper and age, religion, or mari- due very often to lack of knowledge of the deformed lepers. Contacts could be so used to tal status of the subjects in this study symptoms of leprosy.23 Stigma is related to the deformed leprosy patients that they don’t see (P>0.05). Fewer males than females [157 fact that leprosy is one of the diseases with them as a problem contrary to controls who are (70.7%) vs. 186 (72.4%)] stated that they could physical imperfections that leads to disabili- not used to leprosy and a deformed leper to offer a job to a deformed leper (P>0.05). More ties but seldom kills so the patient lives and them looks so strange that they show a lot of educated subjects than illiterate participants continues to suffer. These deformities worsen sympathy towards the patient.23 Lepers may [208 (59.4%) vs. 21 (16.2%)] stated that they with age24 and since deformed lepers are poor want to associate with non-lepers, hence the could offer a job to a deformed leper (P>0.05). because of physical , there is no will high proportion of this category of respondents Most of the subjects who could offer a job to power, they cannot feed and accommodate who expressed such views. deformed lepers were farmers [126 (77.3%)] their families nor educate their children. This and students [85 (72.0%)] rather than other leads to hopelessness and lack of self- Overall variation of attitudinal occupations (P<0.05). esteem.23 questions on social stigma among Every society considers disease in different ways and this influences the attitude of the the study participants community to leprosy patients.25 In the study Results showed that lepers had the highest Discussion area, the use of traditional medicine to explain mean score of positive attitudes towards them- life activities is commonly practiced which selves followed by controls and contacts This study has very important implications encourages superstition. This may explain (P=0.00). This highlights the fact that lepers for the control and elimination of leprosy in why the respondents associated leprosy to are interested in socializing with society but Cameroon because social stigma is a major witchcraft, bad behaviour or sin. These cultur- society on the contrary has a hostile attitude determinant for the rehabilitation of leprosy al taboos can hinder leprosy control in the towards them because of their physical imper- 28 patients. Leprosy has been eliminated in study area.23 fections and fear of contagion. Cameroon12 according to the WHO standard, Social contact with leprosy patients was In a community-based study on attitudes to but there are still endemic foci such as that in generally shunned by majority of participants. leprosyonly in Yaounde, Cameroon, Touko et al.26 Essimbiland. Leprosy has been integrated into A community-based rehabilitation worker com- found that interactions that did not involve phys- primary health care in Cameroon but during mented that “sleeping with eyelids open, make ical contact with lepers were generally welcomed FGDs and IDIs, leprosy social stigma among children to run away from lepers that they are by 94% of the respondents, whereas physical health personnel was very high which can lead not normal people. People don’t want to sit contact was shunned by all, except 4.5%. In this leprosy patients doubt the effectiveness of with them on the same bench in the church,use or study, social contacts like handshaking and treatment, which has negative effects on elim- eat with them.” These findings are in agree- embracing each other, movement to public ination. By drawing attention to stigma, this ment with the work of Touko et al.26 in places and sharing a meal with lepers was study can help fine-tune public health mes- Yaounde, Cameroon who found that social accepted by more than 50% of the respondents. sages and sharpen awareness campaigns relationships with lepers were shunned Leprosy is more a public health problem in Boyo because stigma has proven to be tremendously because of physical imperfections. Most non- and Menchum divisions than Yaounde.23 In useful in neglected tropical disease control.20 leprous participants believed that patients these divisions, inhabitants may not see leprosy Stigma is an important disincentive to treat- with clawed hands and feet and other deformi- as a problem; hence they tolerate a lot of physi- ment21 and this has been proven for leprosy.22 ties were still infectious and as such many cal contact with lepers compared with inhabi- The harm of stigma is that it inhibits treat- refuse body contact with them. The misunder- tants of Yaounde. These findings are positive ment of the stigmatising disease, and there- standing of a society that treated leprosy, its indicators of leprosy elimination. Because of the fore both illness and stigma persist,20 which victims and those working against it, with fear high social stigma, many leprosy patients may may affect leprosy elimination in Essimbiland. and prejudice has been reported from the opt not to attend health facilities since their Social stigma is manifested in several ways - Cross River State of Nigeria.27 Such miscon- presence may reveal their condition.23 Contacts verbal abuse, ostracism from social functions, ceptions still exist in Essimbiland.23 All these are so used to lepers that leprosy is no more a enforced isolation and separation from the are associated to the high social stigma of lep- problem for them so many may not sympathise family. If stigma is carried through toNon-commercial its con- rosy, which is a stumbling block to leprosy with deformed lepers contrary to controls that clusion, the person may be forced into destitu- elimination in the study area. see leprosy as a strange disease and may feel tion. In many cases, going forward for treat- This study has revealed that lepers, contacts more sympathetic with deformed lepers.

Table 5. Summary statistics of positive attitudes to leprosy patients (personal feelings by seeing a leper, sharing a meal or drink, hand- shake and job offer to treated but deformed leprosy patients) in the divisions. Summary statistics of positive attitudes to treated but deformed lepers Study area Sample size Total scores Mean score Variance Standard deviation Boyo 213 1013 4.8 0.4 0.7 Menchum 105 340 3.3 2.0 1.4 Mezam 162 666 4.1 1.1 1.1 Analysis of variance for positive attitudes to treated but deformed lepers Variation Sum of squares Degree of freedom Mean square F-statistic P Among groups 164.2 2 82.1 Within groups 484.4 477 1.0 80.9 0.00 Total 648.6 479

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Types of leprosy social stigma attend the discharge ceremony (a festive occa- tribal stigma associated with the Essimbi peo- In this study, three types of stigma were dis- sion when treated patients are formally dis- ple of Menchum division for contributing to covered-the social stigma which leprosy charged from the colony and given certificates the bulk of leprosy in the study area was dis- patients suffer because of the presence of the to go and live normal life in society).23 In covered. Behavioural studies should be carried disease and the physical imperfections result- neighbouring villages around the leprosarium, out in the study area to overcome the socio- ing in disabilities. As Bainson and Borne28 cured leprosy patients as well as the deformed cultural aspects of leprosy stigma. Quantifi - reported from Nepal: “Some people seem ugly discharged inmates make new alliances with cation of stigma to assess the elimination to most observers. A leprosy patient with other ex-patients. Some leprosy patients even struggle is a new research area in public numerous large nodules on the face or one rear children. Leprosy patients marrying non- health. Stigma-related factors should be who has lost all her fingers would hardly be patients was observed among hospital staff researched into and analysed to develop appro- described by most people as beautiful.” This and the local community, but it was not a com- priate health education strategies and define makes the leprosy sufferer to lose social status mon occurrence. specific messages. and become progressively isolated from socie- This work is vital to the long-term goal of ty, family and friends. Frustration with unem- Overall variation of attitudes to leprosy elimination, as, until stigma is dealt ployment and crippling deformities finally leprosy in the three divisions with, the disease cannot be fully cured. "The fight is not over yet. But it is winnable and lep- force him into alcoholism, begging and adapta- On positive attitudes to leprosy, it was rosy sufferers need not - must not - be tion of a hostile attitude towards society lead- observed that social stigma to leprosy was very shunned... Unless the message reaches every ing to dehabilitation. Contrary to the belief in high in Menchum division. Menchum division continent, every country, every village, every the study area, the leprosy patient becomes is a remote area of the North West Region with patient, the disease will prevail in dangerous hostile to society not because of the cruel way a high rate of illiteracy and has many other pockets".33 society treats him/her but because some com- social problems that can contribute to high ponents of multi-drug therapy affect him/her stigma, for example, poverty and superstition. mentally.23 There was also the tribal stigma In this locality, disease causation is always which most health personnel of the Mbingo linked to witchcraft and leprosy is believed References leprosarium and Regional Delegation of Public either to be due to witchcraft or some past bad only Health in the North West Region have towards behaviour. Social stigma in leprosy results 1. Sachs JD. Solutions to save the world: How the people of Essimbi in Menchum division.23 from the deformity the disease causes.23 The to stop a serial killer. Foreign Policy, 2007. The bulk of leprosy in this region comes from high social stigma to leprosy in this environ- Available from: http://www.foreignpolicy. Essimbi so much so that health staff associate ment can affect leprosy elimination. The use com/articles/2007/04/18/how_to_stop_a_s leprosy with Essimbi people. degree of stigma against leprosy in a given erial_killer. Accessed 9 August 2009. Thirdly, in other areas of the North West community influences many aspects of leprosy 2. Goffman E. Stigma: Notes on the manage- Region including Essimbi land, people believe control; some people may conceal their illness, ment of spoiled identity. 1963, Simon and that leprosy is caused by ones’ enemies or a discontinue chemotherapy, and present them- Schuster Inc., New York, NY, USA, pp 1-173. curse from the ancestors; it is generally selves late for treatment.28 Misconceptions like 3. Calcraft JH. The effects of the stigma of believed that lepers are witches and wizards or leprosy is hereditary29 or leprosy is due to past leprosy on the income generation of lep- have some very wicked characters. Anybody bad behaviour30 can encourage high social associating with lepers including the health rosy affected people in the Terai area of stigma. south east Nepal. Asian Pacific Disability personnel is believed to have some supernatu- As Van Brakel31 argues in his literature ral powers that prevent them from having lep- Rehabilitation Journal 2006 17:73-89. review on leprosy and stigma, with conditions 4. Byrne DS. Social Exclusion. 1999, Open rosy. This may explain why close relations and like leprosy, HIV/AIDS, epilepsy, schizophrenia, sometimes health workers attending to leprosy University Press,. Retrieved on 12 January etc., stigma may be worse than the disease. For 2010 at: journals.cambridge.org/produc- patients also suffer some stigma. Goffman2 this reason stigmas are often labelled as social tion/action/cjoGetFulltext?fulltex- recognised this phenomenon and called it killers since the rejection can lead to loss of tid=57606. courtesy stigma. The different types of stigmas social networks, loss of work, difficulty in find- 5. Hills J, Le Grand J, Piachaud D. were not mentioned by any of the survey ing marriage partners, divorce, loss of reputa- Understanding Social Exclusion. 2002, respondents because it was not specifically Non-commercialtion, discrimination and ostracism, etc and Oxford University Press, Oxford, UK, pp raised as such since the aim of the qualitative ultimately to isolation.20 All these tally with 30-43. data was to fine-tune ambiguous structured views expressed by participants in this study. 6. Mosley P, Dowler E. Poverty and social questions for the survey. Because of the high social stigma, many lep- exclusion in the north and south: essays rosy patients may opt not to attend health facil- on social policy and global poverty reduc- Marriage and divorce or separation ities since they presence may reveal their con- tion. 2003, Routledge Publ. London, UK, due to leprosy dition. This may explain why many people pre- pp 83-121. In this study, 5.1% lepers indicated that fer attending health facilities far away from 7. Hills J, Le Grand J, Rajendra P. Ethnicity, their divorce or separation from their spouse their home in order to remain anonymous- a and a pluralist society. In: Dixit and was due to leprosy. The patients who reported coping strategy described by Barret32 for lep- Ramchandaran (eds.). 2002, Himal Books, that they were married were not necessarily rosy patients, which can slow down the elimi- Lalitpur, Nepal, pp 1-21. with their original spouses. On further re- nation of the disease. 8. Waxler N E. Learning to be a leper, a case examination, many dehabilitated patients study in the social construction of illness. admitted that they were previously married In E.G. Mishler (ed.) Social contexts of and left their first spouses when they were health, illness and patient care. 1981, diagnosed with leprosy. Some female patients Conclusions Cambridge University Press, Cambridge, admitted that they were convinced their first UK, pp 169-191. spouse had abandoned them when they did not A characteristic type of stigma described as 9. World Health Organisation. Fact sheet no.

[Journal of Public Health in Africa 2011; 2:e10] [page 43] Article

101. Leprosy. WHO/OMS, 1998. Available Bamenda, North West Province, NY, USA, pp 1-230. from: http://www.who.int/mediacentre/ Cameroon, 2008, pp 1-6. 25. Ridge T. Childhood poverty and social factsheets/fs101/en/index.html. Accessed 17. Fern EJ. The use of focus groups for idea exclusion: from a child's perspective. 2nd 14 November 2010. generation: the effects of group size, ed. 2002, Policy Press, Bristol, UK, pp 151- 10. AFRO, WHO Africa Region. Leprosy acquaintanceship and moderator on 169. Elimination Programme National response quantity and quality. J Mark Res 26. Touko A, Kemmegne J, Nyiama T. Managers’ Meeting, Harare, Zimbabwe, 1982;19:1-13. Perception of lepers by non-lepers in an 2004. Available from: www.afro.who.int/ 18. Krueger RA. Focus groups: a practical urban centre in Cameroon. Sante. index.php?option=com_docman&task=do guide for applied research. 1988, Sage 1996;6:269-74. c. Accessed 20 0ctober 2009. Publ., London, UK, pp 1-11. 11. Gussow Z, Tracy GS. Stigma and the lep- 19. Khan ME, Anker M, Patel BC, et al. The use 27. Bourdillon C. Leprosy Hospital, Moniaya- rosy phenomenon: the social history of a of focus groups in social and behavioural Ogoja, Cross River State, Nigeria. Int J disease in the Nineteenth and Twentieth research: some methodological issues. Lepr 1989;60:248-9. Centuries. Bull Hist Med 1970 44:425-49. World Health Stat Q 1991;44:145-9. 28. Bainson KA, Van de Borne B. Dimensions 12. Nsagha DS, Bamgboye EA, Oyediran AB. 20. Hausmann-Muela S, Ribera JM, Toomer E, and process of stigmatisation in leprosy. Operational barriers to the implementa- Peeters K. Cautioning against the ‘stigma Lepr Rev 1998;69:341-50. tion of multidrug therapy and leprosy elim- pitfall’ in neglected tropical diseases. 29. Seaton ED, Collier J. Health education to ination in Cameroon. Indian J Dermatol PASS International 2008;1-9. aid leprosy control in Nepal: Lepra elective Venereol Leprol 2009;75:469-75. 21. Coleman C, Lohan M. Sexually acquired study. Lepr Rev 1997;68 75-82. 13. Nsagha, DS, Bamgboye, EA, Oyediran, infections: do lay experiences of partner 30. Lennon JL. A review of health education in ABOO. Childhood leprosy in Menchum notification challenge practice? J Adv Nurs leprosy. Editorial. Int J Lepr 1988;56:611-8. division of Cameroon: Result of a school 2007;58:35-43. 31. Van Brakel WH. Measuring leprosy stigma survey and chart Review. Nig Q J Hosp 22. Floyd-Richard M, Gurung S. Stigma reduc- - a preliminary review of the leprosy liter- Med 2009;19:125-30. tion through group counselling of persons ature. Int J Lepr Other Mycobact Dis 2003; 14. Nsom MC. Point de la situation de la lèpre affected by leprosy- A pilot study. Lepr Rev 71:190-7. au Cameroun. Dossier de presse. 46eme 2000;71:499-504. only Journée Mondiale des lépreux, 1999, pp 1-3. 23. Nsagha DS. Epidemiology and community 32. Barrett R. Self-mortification and the stig- 15. Provincial Delegation of Public Health perception of leprosy in Boyo, Menchum ma of leprosy in Northern India. Med Documentation. Leprosy control unit, and Mezam divisions of Cameroon. Ph.D Anthropol Q 2005;19:216-30. Bamenda, North West Province, thesis. University of Ibadan, Nigeria, use2002, 33. Jopling WH, McDougall AC. Handbook of Cameroon, 1996, pp 1-12. pp 1-394. Leprosy. 4th ed. 1988, Heinemann 16. Provincial Delegation of Public Health 24. Bryeceson A, Pfaltzgraff ER. Leprosy. 3rd Professional Publ., Portsmouth, NH, USA, Documentation. Leprosy control unit, ed. 1990, Churchill Livingstone, New York, pp 1-180.

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