INTRODUCTION:

“I remember (on one occasion) a very badly disabled man was sitting near me. When I said that leprosy is not a punishment he started pulling my sari and said, “Say that again, say that again.” It touched his heart because he felt, “I am loved, I am wanted.” This is what our leprosy brothers and sisters need from us. It is true we need to give them medicines; we do need to do all that. It is a natural thing, but the most wonderful thing is to make them wanted, to make them feel loved.”

-MOTHER TERESA

Leprosy is never been feared for its infectivity but for the unsightly disability and deformities caused by the disease⁴. M. leprae infects nerves and usually starts as a skin patch with loss of sensation. The impairment in nerves manifests in its selected target organs (Hands, feet and eyes) as a loss of protective sensation and paralysis of muscles leading to visible deformities². The deformities disable affected persons. At times, the visible deformities precipitate stigma. India achieved the global elimination i.e. less than 1 per 10,000 populations of leprosy as a public health problem at the end of 2005. Still 1.35 lakh new cases were detected during the year 2012-2013. This gives Annual New Case Detection rate (ANCDR) of 10.78 per 100,000 populations. One new case is detected every 5 minutes. Each tenth case of leprosy is a child and there are more than 10,000 cases with disability due to leprosy. Further projection of global leprosy burden shows that 5 million new cases would raise between 2000 and 2020, and in 2020 there would be an estimated 1 million people with WHO grade 2 disabilities.¹⁰ Fresh statistics have set the alarm bell ringing, rather than showing a declining trend, the incidence of leprosy in the country is increasing^1-5. Awareness in community about leprosy will lead to early case detection and prevention of non-compliance to treatment, which in turn will prevent disabilities resulting from leprosy. Among the various disabilities, a plantar ulcer constitutes about 30%. As it constitutes a main cause of stigma, discrimination, and job dislocation ending in poverty⁷. Therefore, the investigator decided to study awareness about leprosy among patients with leprosy and the impact produced by disability on physical functioning as well as psychologically and socially.

Harminder Singh, et al conducted a cross sectional study from August 2007 to September to 2010 government medical college, Chhattisgarh. To assess the knowledge about leprosy and to determine impact of disease on day-to-day life. Results showed that 68% of subjects were unaware about the cure and prevention of disease. Present survey focused that impact of leprosy is not only on physical, but psychosocial and economic problems of sufferer. Many patients were refrained from eating together, not attending the social functions. The study concluded that family based and peer group counseling could help in boosting confidence and clearing misconceptions regarding leprosy which in-turn will help to reduce impact of leprosy³.

PROBLEM STATEMENT:

A Descriptive study to assess the awareness about leprosy and its physical and psychosocial impact on patients suffering with leprosy related disability from selected referral centers of a Metropolitan city in Maharashtra.

RESEARCH QUESTION:

· What is the level of awareness about leprosy among patients suffering with leprosy related disability?

· What is physical and psychosocial impact of leprosy among patients suffering with leprosy related disability?

OBJECTIVES:

· To assess awareness about leprosy among patients suffering with leprosy related disability.

· To assess the physical impact of leprosy on patients suffering with leprosy related disability.

· To assess the psychosocial impact of leprosy on patients suffering with leprosy related disability.

· To associate the awareness about leprosy with selected demographic variables.

· To associate the awareness about leprosy with physical impact on patients suffering with leprosy related disability.

Assumptions:

· Patients with leprosy may verbalize causes, signs, and symptoms of leprosy.

· Patients suffering with leprosy related disability may verbalize Physical and Psychosocial impact experienced by them.

Delimitation:

This study is delimited to patients suffering with leprosy related disability from selected referral centers of Metropolitan city.

MATERIAL AND METHODS:

Research approach: Descriptive approach

Research Design: Survey design.

Setting: Selected leprosy referral centers. Where patients are diagnosed, treated, and operated in case of severe disability.

Sample size - 150 patients suffering with leprosy related disability

Sampling technique- Non- probability purposive sampling technique.

Inclusion Criteria:

· Patient aged above 15 years of age.

· Patient with leprosy having visible disability.

· Patient who are willing to participate in the study.

Exclusion criteria:

· Newly diagnosed patient with patch/reaction.

· Patients having disability since birth.

Tool Preparation:

The tool used for the study is the semi structured interview schedule and structured rating scale.

The tool in this study was divided into following sections-

Section1- Demographic information: Age, gender, education, duration of leprosy, type of disability.

Section 2- Semi Structured questionnaire to assess awareness about leprosy.

Section 3-Structured rating scale on physical impact including various domains self care, eye, hands, dexterity, feet^8-9.

Section 4- Semi structured questionnaire to assess psychosocial impact of leprosy like stigma, community participation, low self- esteem, social distance⁶.

Validity and Reliability:

For the content validity tool was validated from 11 experts from the field of medicine specialized in diagnosing leprosy, nursing and statistics.

The reliability was established for 15 subjects. Reliability was done by test-retest method using Pearson’s correlation test for awareness and psychosocial came to be 0.90. For structured rating scale to assess physical impact was 0.98.

Ethical Consideration:

· In this study, confidentiality was maintained by keeping the collected data confidential and not revealing the subjects identification when reporting or publishing the study.

· Subjects were treated as autonomous agents by informing them about the study and allowing them to voluntarily choose to participate or not.

· Data collection period started from 24 October to 14 December 2013.

RESULTS:

Major findings of the study according to their sections are as follows.

Section 1- Findings of the demographic data:

The data analysis of demographic variable shows that there was a mixed variety of distribution of subjects according to their age, majority of the subjects 53 (35.3%) were in the age group of 46-60 years, prevalence is more in males 104 subjects (69.3%) suffering with leprosy related disability. Further, according to education 85 subjects (56.7%) were illiterate. Whereas 100 subjects (66.7%) was found to have leprosy related disability since more than 10 years. Among all type of disability, 120 subjects (80.0%) was found to have sole wound as the most common type of disability.

Section 2- Findings of awareness level about leprosy among patients suffering with leprosy related disability.

Section 3- Findings of structured rating scale to assess physical impact of leprosy.

Result highlights the fact that majority of the subjects i.e. 70 are experiencing moderate difficulty in performing task. Like taking whole body bath by self, brushing teeth, cutting finger or toe nails, holding glass content. Whereas severe difficulty are experienced when they need to apply pressure like walking for a long distance, reading or doing work for more than two hours, doing household work, lifting objects above head, holding pen/pencil to write, climbing up/down stairs. Impact was seen more in patients having more than three disabilities, which in-turn affect patient in performing daily activities. Rehabilitation activities, use of assistive device can help to reduce impact caused by the disease.

Section 4- Findings of psychosocial impact of leprosy among patients suffering with leprosy related disability.

Results highlights the fact that self perceived stigma is more among patients though they are involved in family discussion, but still patients do not feel confident in trying learning new things, participate in community activities, visiting public places, do not accept positively the disease condition, feel failure after being diagnosed with leprosy.

Analysis of association of awareness with selected demographic variables. On using ANOVA, test age and education significantly vary with awareness level about leprosy. While gender, duration of leprosy and number of disability does not significantly vary with awareness level about leprosy.

Correlation of awareness with physical impact

By using Pearson correlation method. Results show that there is negative correlation between awareness and physical impact, as the awareness increases physical impact decreases. However, there is no significant association between awareness and physical impact.

CONCLUSION:

The key to success is to highlight importance of awareness programmes to remove misconceptions and prevent disability. This calls for innovative research projects and involvement of medical colleges for development of tool for early diagnosis and detection of infection and nerve damage as early as possible to detect the disease at nascent stage if we do not wish to lose all we have achieved so far.

REFERENCE:

1. Vasudevan N. Health Action A HAFA National Monthly. Secunderabad, AP; 2013.

2. Park K. Textbook of Preventive and Social Medicine. 21^st edition. Jabalpur: Banarasidas Bhanot; 2009.

3. Harminder S. A 3 years experience of treating tribal leprosy patients and its impact on various domains of patient life. International journal of Health & Allied Sciences. Vol2. Issue 1. Jan- Mar www.ijhas.in

4. Prabhudeva S. World Leprosy eradication day. Nightingale Nursing Times. Jan 2014; Volume 9 (10) : 975- 2188.

5. World Health Organization. Global Leprosy Situation. Weekly Epidemiological Record 2012; 34: 317 -28.

6. Sanyal D, Das Gupta D, Mahapatra N and Samanta Sk (2011). A Process Report On Physical and Psychosocial Determiners of Social Functioning in Leprosy Patients. Indian J Lepr. 83: 225 - 229.

7. Swarnkars. Community Health Nursing. 3^rded. Indore : N.R.Brothers ; 2011.

8. CECILIA M.A qualitative study of common functional problems experienced by people with complete nerve paralysis. Leprosy Review . 79,154-161.

9. Ferreira TL,Alvarez RRA, Virmond M, Araujo, EA. Questionnaire to evaluate hand function with nerve lesions. Hansen International. 2010; 35(2) :47-59.

10. Richardus JH, Habbema JD. The impact of leprosy control on the transmission of M. leprae: Is elimination being attained? Leprosy Review. 2007; 78: 330-7

Received on 14.06.2015 Modified on 26.06.2015

Asian J. Nur. Edu. and Research 6(1): Jan.- Mar.2016; Page 37-40

DOI: 10.5958/2349-2996.2016.00008.2