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Groom Skills,
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Generate Knowledge for people's health.

To Improve the Efficacy,
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of Health Systems.

 

Kap of Leprosy patients on Leprosy

  

In this section, the results of the study based on leprosy patient interviews were described. Interviewing the leprosy patients was not easy and we have encountered a non response rate to various questions in interviewing patients which are described later. We had to be very cautious in dealing with the patients because affliction of leprosy places the patient in a very sensitive situation. We did not use the term "leprosy patient " unless the patient himself / herself did so. A large number of patients never accepted or do not know that they have leprosy. To assess the knowledge, attitude and practices of the patients, initially the interview was started to know about their own disease and later about leprosy disease in general.

 
Distribution and profile of the sample:
On the whole 334 respondents were interviewed, of these 59% are from rural areas, about 35% are from urban and 6% from tribal areas. (Table -4.2.1).
 

Table 4.2.1: Distribution of Leprosy Patients by Place

Places No. of respondents %
Rural 198 59.28
Tribal 20 5.99
Urban 116 34.73
Totals 334 100
 

Respondents comprised of an heterogeneous age group of both sexes (Table -4.2.2). The total number of males interviewed (58%) were relatively equal to the females (48%). The sex distribution of patients is more are less similar in rural, tribal and urban areas. In the rural areas the number of males were 59% and females 41%, in tribal 60% males and 40% females and in urban 57% males and 43% were females. It is seen that the number of respondents in the age group of 10-39 years, contribute to the maximum share of the sample.

 
Table 4.2.2: Age, Sex distribution of Leprosy Patients in Urban, Rural and Tribal areas
Age group

Rural (n=198)

Tribal (n=20)

Urban (n=116)

Male Female Totals % Male Female Totals % Male Female Totals %
4-9 years 5 7 12 6.06 2 0 2 10 5 5 10 8.62
10-19 years 25 19 44 22.22 3 1 4 20 20 12 32 27.59
20-29 years 19 17 36 18.18 1 1 2 10 10 12 22 18.97
30-39 years 28 10 38 19.19 2 3 5 25 8 4 12 10.34
40-49 years 18 6 24 12.12 1 0 1 5 6 8 14 12.07
50-59 years 10 10 20 10.1 3 2 5 25 7 4 11 9.48
60-69 years 9 9 18 9.09 0 1 1 5 7 3 10 8.62
70-79 years 2 3 5 2.53 0 0 0 0 3 2 5 4.31
80 years 1 0 1 0.51 0 0 0 0 0 0 0 0
Total 116 81 198 100 12 8 20 100 66 45 116 100
 

The mean age of leprosy patient is 32.5 years in rural, 32.1 years in tribal and 31.2 years in urban areas. The percentage of female patients are more in the age group of 10-29 years in rural and urban areas.

 

Distribution of the Leprosy Patients by socioeconomic status of the House hold in Rural, Tribal, and Urban areas: The socioeconomic characteristics of leprosy patients is presented in Table -4.2.3. Caste: A larger proportion of the respondents are from backward class (47%), 24% of them were from other caste, scheduled caste were (16%) and scheduled tribes (14%). In the rural and urban areas, backward class patients were more 48% and 51%, scheduled tribes were contributing to 60% of the sample in tribal areas. Among the respondents percentage of Hindus were more in tribal (100%) and rural (85%) areas where as large proportion of Muslims were present in urban areas compared to rural and tribal. Fifty five percent of the total respondents were illiterates. Among the literate only 1.2% of the respondents were graduates. Thirty six percent of the respondents in the rural areas, 35% in tribal and 50% in urban areas had school education.

 

According to the information provided by the respondents majority of them (35%) fall in the income group of Rs. 500-1500 and 25% in Rs. 1501-3000 in rural, tribal and urban areas. About ten percent of the respondents were earning less than Rs. 500/- per month.

 

On the whole 59% of the respondents were married and 34% were unmarried (including children) in rural, tribal and urban areas. Among the others 4.3% were widowed, 2.4% were divorced and 0.3% separated. None of the participants mentioned the reason as leprosy for divorce. It was observed during the survey in many of the villages in rural areas that the divorces were more. When it was asked the reason for divorces, few men stated that "lot of women earn Rs. 1000/- or more per month by making "Beedis" just sitting at home. This economic freedom is making lot of women more independent and are opting for divorces". But women stated that "men are moving out of villages to Bombay and other places for work and they leave the wives behind for years". They also stated that "there are more number of girls in the community for marriage and men have a wider choice for second marriages too". They stated that "even for simple reasons men go for divorces". One need to focus into these social issues which need further research.

 
Table -4.2.3: Distribution of the Leprosy Patients by socioeconomic status of the House hold in Rural, Tribal, and Urban areas
Caste Rural (%)
n-198
Tribal (%)
n=20
Urban (%)
n=116
Scheduled Tribe 11.6 60 8.6
Scheduled Caste 20.2 15 7.8
Backward Class 48 20 50.9
Other Caste 20.2 5 32.8
Religion
Hindu 85.4 100 64.7
Muslim 14.6 0 35.3
Christian 0 0 0
Educational Status
Illiterate 59.1 65 44.8
Primary 24.2 30 32.8
Secondary 12.6 5 17.2
Intermediate 2 0 3.4
Graduation 1 0 1.7
P.G / Professional 0 0 0
Others 1 0 0
Income of the Household
Less than Rs. 500 10.6 20 8.6
Rs. 501-1500 38.4 35 28.4
Rs. 1501-3000 19.2 20 35.3
Rs. 3000-5000 8.6 15 19
Rs. 5001-10000 19.7 5 6.9
Rs. 10000 + 3.5 5 1.7
Marital Status
Married 63.6 50 50.9
Unmarried 30.3 30 43.1
Separated 0.5 0 0
Divorced 2.5 5 1.7
Widowed 3 15 4.3
 

According to Table 4 the respondents were of various occupations. On the whole labourers constitute 27% of the sample, followed by students 18%, 17% were agriculturists, about 16% of them were house wives in rural, tribal and urban areas. Specific to areas daily wage labourers were more in rural and tribal areas, where as in urban areas respondents were involved in wide range of occupations.

 
Table -4.2.4: Distribution of the Leprosy patients by Occupation in Rural, Tribal, and Urban areas
Occupation Rural n-198 Tribal
n=20
Urban
n=116
TOTAL%
Labourer 65 8 16 26.65
Student 28 6 27 18.26
Agriculture 53 3 0 16.77
House wife 22 2 28 15.57
Business 5 1 5 3.29
Private employee 1 0 7 2.4
Unemployed 4 0 1 1.5
Govt. employee 0 0 3 0.9
Others specify 20 0 29 14.67
 
Table 4.2.5 -: Distribution of the Leprosy Patients by family type in Rural, Tribal, and Urban areas
  Rural (%)
n-198
Tribal (%)
n=20
Urban (%)
n=116
Total
Nuclear 76.8 80 85.3 80.54
Joint 20.2 20 12.1 17.37
Live alone 3 0 2.6 2.1
 

Out of the 334 respondents 2.1% of the respondents mentioned that they were staying alone. (Table -4.2.5). Among them three of them were females remaining four were males. Out of the four males only one respondent stated leprosy as the reason for his loneliness. One women mentioned family disputes as the reason for staying alone. Two females patients from rural areas having grade II deformity stated that they were pushed out of their houses due to leprosy. In a study in Tamilnadu by Thilakavathy S & Others stated that a leprosy patient is usually identified and visualised as a person with significant deformity by the general public. For this reason, most of the psycho-social problems associated with leprosy are identified with the grade 2 and grade 3 deformity group of patients. Study found that deformity has a significant role to play with respect to patients own psychology, attitude of the family and community, patients interaction, employment, income and expenditure. A similar type of results could be noted in the present study.

 
Table 4.2.6 -: Distribution of the Leprosy Patients by Diagnosis in Rural, Tribal, and Urban areas
  Rural (%) n-198 Tribal (%) n=20 Urban (%) n=116 Total
Multibacillary 42.9 65 38.8 143
Paucibacillary 57.1 35 61.2 191
 

Among the respondents 43% of them were Multibacillary patients and 57% Paucibacillary (Table -4.2.6). Specific to rural and urban areas there were more number of Paucibacillary cases and in tribal areas multibacillary constitute larger proportion of the sample. Table-4.2.7 focuses about the distribution of leprosy patients by specific diagnosis. This information is collected from Patients case records, Non medical assistants and Supervisors. Distribution of sample shows that there were as high as 57% of the patients with Borderline Lepromatous followed by 28% of Borderline Tuberculoid cases and other types are mentioned in table -4.2.7.

 
Table 4.2.7 -: Distribution of the Leprosy Patients by Diagnosis in Rural, Tribal, and Urban areas
  Rural (%) n-198 Tribal (%) n=20 Urban (%) n=116 Total
Borderline Lepromatous 51 55 73.3 197
BorderlineTuberculoid 35.4 30 17.2 96
Indetermined 5.1 5 4.3 16
Borderline Borderline 5.6 5 0 12
Lepromatous Leprosy 1.5 5 3.4 8
Tuberculoid Tuberculoid 1.5 0 1.7 5
Totals      

334

 
Registration details of the patient :

When it was asked where were the patients registered initially, more than 85% mentioned that they were registered with (Lepra India) the staff who visited their house or the staff who are dispensing medicines for patches, 8.2% stated various places of registration like Maharastra, Ditchapally, private hospitals etc. another 4% stated that they were registered with the government and later registered with Lepra India. (Table-4.2.8). When it was questioned who advised them to approach Lepra India, 87% stated that ( Lepra India) staff advised them to obtain services from Lepra India, 6% of the respondents mentioned that they have voluntarily reported, where health education might have contributed to certain extent, other information sources mentioned were friends / neighbours, government doctors, family members, private doctors and others. (Table -4.2.9). One point need to be highlighted that majority of the patients do not know the name of "Lepra India" in rural, tribal and urban areas. They recognise Lepra India just by the jeep with medicines or the staff who visit their house for treatment of patches. Even the staff were not very comfortable in informing that they were from Lepra India as they themselves have the doubt whether to inform the public or not and were also not sure how public would react if they say they are from an NGO

 
Table 4.2.8 -: Where were you registered initially ?
  Rural(%)
n-198
Tribal(%)
n=20
Urban(%)
n=116
Total
Lepra India 87.4 85 87.9 292
Government 5.1 5 2.6 14
Others 7.6 10 9.5 28
 
Table: 4.2.9 -: Who advised you to approach Lepra India ?
  Rural(%)
n-198
Tribal (%)
n=20
Urban (%)
n=116
Total
Lepra India staff 84.8 80 91.4 290
Voluntarily 6.6 10 4.3 20
Friend / neighbour 3 10 0 8
Government Doctor 1.5 0 1.7 5
My family members 2 0 0.9 5
Private Doctor 1 0 0 2
Others specify 1 0 1.7 4
 
Summary and Conclusion:

The conclusions of this study are grouped as answers to each of the objectives mentioned. These conclusions are drawn from the data obtained through one or more of the data collection methods.

 

Communication and education are interwoven. Communication strategies can enhance learning. The ultimate goal of all communication is to bring about a change in the desired direction of the person who received the communication. This may be at the congnitive level in terms of increase in knowledge: it may be affective in terms of changing existing patterns of behaviour and attitudes, and it may be psychomotor in terms of acquiring new skills. These are referred to as learning objectives.

 

Communication Strategy recommends non prescriptive, participatory, need based, area specific, media-mix approach aimed at informing, educating, motivating and changing the attitude and behaviour of the target group in a stipulated time. Communication Goal is to provide a well planned, sustained and continued information, Education and Communication System for advocacy, social mobilization and community empowerment. The sustained process of communication which involves appropriate synthesis of five distinct elements, namely, communicator, message, medium, receiver and effect has to be developed. A sustained information education and communication system comprise of adequate communication infrastructure and budget, objectives and guidelines, communication needs assessment, trained manpower, training of field functionaries to improve communication skills. Efforts have to be made to create judicious communication environment to introduce need based, target oriented and area specific communication interventions, based on empirical data. The monitoring and research which is an intrinsic part of planned communication efforts has to be improved. It is also important to specifying the responsibilities of each department/personnel, prepare action plans, establishing a data bank, promoting sharing of resources, preparing an inventory of communication material available for sustained communication strategy.

 

International Federation of Anti Leprosy Associations [ILEP] states that effective treatment and care is necessary for health education to be effective. Understanding leprosy health behaviour, society's attitudes, the simple instruction of the signs and symptoms of leprosy, and community participation are all necessary for the success of leprosy health education aims. Health education should produce behavioural change in overcoming the socio-cultural aspects of leprosy stigma, identification and recognition of the disease, continuation of antileprosy therapy, and promotion of rehabilitation (both social and physical).

 

Documentation of the communication strategies of LEPRA India from its inception: There is no written communication strategy for LEPRA India. Though health education programmes were initially planned by the professional health educator no proper documentation was done. No standardised format for documenting health education activities. Action plans were not based on the KAP studies but are planned just based on prevalence or incidence of the disease locally (Project specific). Presently no trained health educator is available. No basic information on the geographical distribution of the cases is available. Poor documentation of health education activities, no pre or post test results available.

 

KAP of leprosy patients, key informants and family members in urban (Hyderabad) , rural and tribal (Adilabad) areas:

Patients: On the whole 334 patients were interviewed, of these 59% are from rural areas, about 35% are from urban and 6% from tribal areas. The KAP study revealed that as high as 70% of the respondents have low knowledge index. In rural areas just 21%, 30% in tribal and 27% in urban areas have high knowledge index. This reminds us that the health education campaigns need to be more strengthened to improve the knowledge of the patients.

 

Key informants: Altogether 141 key informants were surveyed, of these 34% are from rural areas, about 33% are from Urban and Tribal areas each. It is quite interesting to know the knowledge level was rated as 'high' in 79% of the respondents in rural areas , 72% in tribal and 70% in urban areas in the key informants unlike the patients where the knowledge levels are low. About 30% of the respondents were found having low knowledge on leprosy.

 

The data regarding the distribution of knowledge and attitude among the respondents from rural, tribal and urban areas were cross tabulated to show the relation, if any, between the two parameters. In rural areas, 79% of those with high knowledge level also showed high attitude level and 60% of the respondents with low knowledge also showed low attitude level. In urban areas, 67% of the respondents with high knowledge level showed high attitude, but in tribal areas among the respondents with high knowledge 49% of the respondents showed low attitude.

 

Family members: Altogether 39 family members were interviewed, of these 48% are from rural areas, about 30% are from tribal and 20% are from urban areas. The KAP study revealed that the knowledge level was rated as 'low' in 82% of the respondents where lot of health education inputs are needed to educate the family members. Without taking statistical significance we found that the knowledge levels are as low as 8% in tribal areas, 21% in rural and 25% in urban areas.

 

Methods of communication in use by the providers: Lepra India staff mainly the non medical assistants, non medical supervisors, physiotherapist , medical officer and the project officer are providing maximum information to the general public, patients and the family members. It is to be noted that none of the staff got trained in health education in Adilep and Hylep at present. Hence activities are planned just by the staff themselves without basic data.

 

On discussion the commonest method used by the health staff for health education is providing the information orally. NMAs were using flash cards only during the surveys for case detection and no other material is shown to the patients or non patients. The health education activities are more in rural areas compared to tribal and urban areas as on today. It is interesting to know that the staff them selves were not confident what type of information need to be provided to patients e.g. "To inform the patient whether he or she has leprosy" is the major question. In urban areas video shows in the slums is the only method of health education apart from group talks, school education, teachers education, rallies, exhibitions etc. Methods of communication : Individual approach is by personal contact and home visits. Group approach is by group discussion methods e.g. group talks, group discussions, lectures. demonstrations. Mass approach is by Television, video shows, IEC van shows, printed material or pamphlets, flannel boards, posters, exhibitions, folk methods etc.

 

Needs assessment of various categories of patients, family members, in terms of information in urban, rural and tribal areas:

Patients view on information to be provided to patients: Sixty six percent of the respondents felt that it is important to inform about the treatment for leprosy like duration of treatment, importance of regular intake of drugs, disadvantages of not taking regular treatment were mentioned as important information. Twenty seven percent of them stated that complete information about the disease need to be provided, 11% opined that it will be good if cause of the disease is told, another 10 % wanted to be informed about the precautions to be taken with this disease, 5% wanted information on diet to be taken and the care to be taken with deformities or prevention of deformities. Specific to rural, urban and tribal areas people are more concerned about the treatment and all the necessary information about the disease but in urban areas respondents were also concerned more about the precautions to be taken with this disease compared to rural and tribal.

 

Patients view on Information to be provided to family members: Fifty six percent of the patients stated that it is good to inform family members about duration of treatment and also show concern about the regular intake of drugs. Twenty two percent mentioned that all necessary information on leprosy need to be given to the family members, 16% wanted their family members to be informed about how to take special care of the patient with this disease, 12% were bothered to inform about the cause of the disease, 4% wanted to inform family members about importance of diet, another 3% stated precautions and preventive aspects of the disease need to be highlighted. About 7% of the respondents were totally against providing any sort of information to their family members. This shows that the stigma is more in urban areas (11%) compared to rural (4%) and tribal areas.

 

Patients view on Information to be provided to community: More than 43% of the respondents wanted the public to be informed about all the general information about the disease, 42% of them wanted the public to know about the availability of treatment for the disease of patches (Leprosy). Seventeen percent and 12% of the patients wanted to disseminate information on cause of the disease and the diet and few respondents have also mentioned about the prevention, precautions of the disease. In urban areas respondents wanted maximum information to be provided on general information about the disease (73%), where as in rural (59%) and tribal ( 75%) areas patients were much concerned about the information about the availability for treatment for leprosy rather than other aspects.

 
Conclusions :
The poor documentation services could be due:
  • To non availability of professional health educator.
  • NMAs and NMSs are overloaded with writing work which can be reduced by decreasing the number of registers.
  • untrained staff in health education activities
  • lack of time as the treatment compliance, incidence and prevalence rates are considered as more important than other statistics
  • Frequent surveys totally concentrated on case detection rather than health education.
  • Lack of time and distance could be another reason
 
Low knowledge levels in patients and family members could be mainly because:
  • Staff themselves are not confident to inform patient and family about leprosy as they have the fear patient may reject the treatment or discontinue the treatment or society may not accept them. Hence majority of the staff never inform patient about his disease.
  • Health education is given mostly given on treatment, duration rather than basic information about the disease.
  • No specific health education programmes for patients and family members were planned.
  • Time and distance (poor accessibility )could be the reason
  • Illiteracy could be one of the reason for poor knowledge.
  • No baseline data or KAP studies
  • No pre or post test were done just health education is given accidentally.
 
Knowledge levels of key informants could be considered as high because of literacy, accessibility to information due to high socio economic status.
 
Recommendations:
1. Development of communication strategy:
  • Based on the KAP results communication strategy could be developed
  • Expert panel should be formulated before development of communication strategy involving various staff
 
2. Training the staff on health education
  • Staff should be trained in health education
 
3. Recruitment of professional Health educator
  • Recruitment of professional health educator atleast at the head quarters is important in formulation of plans, evaluation and implementation of health education activities.
 
4. Improve the basic geographical data of the project areas
  • Computerise geographical details of the areas like blocks, mandals, villages, habitations etc. for basic planning
  • Computerise the patients data for more statistical analysis.
 
5. Allocation of budget for specific activities of health education
  • Should be based on health educator planning, action plan more specific (locally)
 
6. Use of available resources for health education rather than investing more
  • Optimum utilisation of health education materials rather than investing more on new AV aids.
 

  For comments and queries write to : ihs@ihs.org.in


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