Abstract : Tuberculosis is a disease with social implications due to stigma attached to it. It further prolongs delay in seeking proper care leading to physical, psychological and social disabilities and dehabilitation. This study was conducted with an objective to assess Quality of life (QOL) and perceived stigma of tuberculosis patients. This prospective study was conducted on 100 tuberculosis patients selected by convenience sampling technique in selected DOTS clinics of district Ludhiana, Punjab. WHOQOL-BREF (World Health Organization- Quality Of Life ) was used as research instrument to assess Quality of life and EMIC (Modified Explanatory Model Interview Catalogue) developed by WHO-TDR (World Health Organization- Tropical Disease Research) to assess the Perceived stigma among the subjects. Data was collected by self- report method by pen & paper i.e. tool was translated into Hindi, Punjabi and explained to patients. After taking informed consent patient himself put information into it under guidance of researcher.Explanation about different sections in the question was provided by the researcher during face to face conversation.
The findings revealed that all (100%) TB patients were stigmatized, (99% were somewhat stigmatized while 1% were highly stigmatized). 96% of the subjects showed average Quality of life. The highest mean quality of life score was recorded in physical domain of health (69%) followed by social domain (68%) and psychological domain (66.33%). There was a negative correlation of perceived stigma with quality of life (r= – 0.11, p=0.268). Adults (36-45 yrs), never married and recently diagnosed patients showed better Quality of life (p<0.05). Younger adults (18-25 years), females, unmarried, migrants and lower-middle class were found to be more stigmatized (p<0.05). The study concludes that despite the ability to cure TB, the stigma among patients still remains a problem which has an impact on QOL. Therefore, it is recommended that nurses need to supplement the efforts in communication and education of public about TB to reduce stigma experienced by TB patients and play a supportive and curative role to optimize better QOL.
Keywords
Perceived stigma, Quality of Life, Tuberculosis Patients.
Correspondence at
Mrs. Prabhjot Saini
Professor
DMCH College of Nursing DMC & Hospital, Ludhiana.
Introduction
Tuberculosis has been recognized as a scourge of humanity since antiquity.1 Tuberculosis (TB) remains a major global health problem. Despite the availability of a cheap and effective treatment, tuberculosis still accounts for millions of cases of active disease and deaths worldwide. Though India is the second-most populous country in the world one fourth of the global incident TB cases occur in India annually. As per WHO Global TB Report 2015, out of the estimated
global annual incidence of 9.6 million TB cases, 2.2 million were estimated to have occurred in India. There were also 0.22 million TB deaths in India2. Tuberculosis is a disease with social implications due to the stigma attached to it. It has been seen that apart from physical symptoms, TB patients face various problems that are social and economic in nature.3 The social stigma is recognized as an important barrier for successful care of people affected by tuberculosis. Tuberculosis has been and is still considered as a ‘dirty disease’, ‘a death penalty’ or as affecting ‘guilty people’.4,5 Health-related stigma describes a social concept that has an enormous impact on the lives of people that suffer from a certain health conditions.6 According to Rensen et al. (2010), stigma is interrelated and may have an impact on the self-efficacy of the affected person, his or her participation in the community, personal well-being and self-esteem.7 Affected persons may feel disappointed in themselves for contracting the particular disease or condition, feel embarrassed, guilty and inferior compared to others.8-11 Khan et al. (2000) showed that most of the poor patients preferred private practitioners. The patients were reluctant to disclose their disease but the same time they were facing some social as well as economic problem.12 Women more often Though in medical practice, the method of assessing patient health status and disease is by laboratory or clinical tests but it becomes impossible to separate the disease from the individual’s personal and social context, especially in chronic and progressive diseases. Therefore, for a comprehensive assessment of patients’ health status, it is very much essential to assess the overall impact of TB on health and patients’ perception of well-being, besides routine clinical, radiological and bacteriological assessments. This assessment can be done by measuring the Quality of Life (QOL) that has several dimensions 15.
TB-related stigma is a matter of practical concern because it contributes to suffering as component of the so-called hidden burden of disease and it may interfere with treatment and control.16 It is clear that the burden of disease is huge indicating that the effect of disease is manifold. This indicates that the effect of disease needs to be studied not just on physical dimensions but all other dimensions as they also have a great impact on treatment and overall well-being of patients. Therefore, The study aims to deepen our understanding of TB-related perceived stigma and its impact on quality of life among tuberculosis patients. Hence the study was conducted with the objective to to assess Quality of life (QOL) and perceived stigma of tuberculosis patients.
Material and Methods
A descriptive research design was used on 100 TB patients selected by convenience sampling technique in selected DOTS clinics such as DMC & Hospital, Haibowal Kalan, Haibowal khurdh, Kundanpuri, and Gurunanak pura of Ludhiana city, Punjab, India. Tuberculosis patients receiving DOTS therapy at least from 3 months, age more than or equal to 18years were included in the study and patients having any other chronic illness, pregnant women were excluded. The tool was divided into 4 parts: Part I- Socio- demographic characteristics, Part II- Disease profile, Part III- Modified Explanatory Model Interview Catalogue (EMIC) to assess perceived stigma among TB patients and Part IV- WHOQOL-BREF to assess Quality of life (QOL). Data was obtained by self report method.
Modified Explanatory Model Interview Catalogue (EMIC) developed by WHO/TDR (2002) was used to assess Perceived stigma. The catalogue consisted of 18 questions to assess Perceived stigma among tuberculosis patients. Items were rated as “Yes”, “Possibly”, “Uncertain” & “No” and scored as 3, 2,1&0 respectively. The subjects were categorized into No stigma (‘0′ score), Somewhat stigmatized (1-32 score) and highly stigmatized (33-54 score). Quality of Life was assessed by using a pre-designed, pre-tested questionnaires; WHOQOL-BREF, the questionnaire composed of four domains Physical, Psychological, Social, and Environmental. The questionnaire consists of total 26 Likert-type items out of which 24 are formulated into separate subscales: physical (seven items), psychological (six items), social (three items) and environmental (eight items) domains. Subjects were asked to respond to each item with a score of 1-5. A high score indicate better Quality of life. The level of Quality of life was categorized as per the scores into Good (89-120), Average (57-88) and Poor (24-56). Reliability of tool of standardized tool was predetermined. Informed consent was taken from them before filling the Questionnaire. Ethical clearance was obtained from institutional ethical committee of DMC & Hospital, Ludhiana.Analysis of the data was done in accordance with the objectives of the study. Calculations were carried out with the help of Microsoft excel and SPSS. The various statistical measures used for analysis were frequency distribution, measures of central tendency (mean), measures of dispersion (standard deviation) t-test and ANOVA test applied to find out the statistical significance.
Results
Sample Characteristics
Table 1 shows the mean age of 100 subjects was 34 ± 14.97 years. One third of subjects (36%) were of age group of 18-25 years followed by 27% in the category of 26- 39 years and > 45 years, 10% were of age group of 36-45 years. Urban (78%) subjects outnumbered the rural subjects. Two third of the patients were married (64%). More than half (54%) of the subjects were males and 46% were females. Majority of the subjects (64%) were married while 35% were never married and only 1% was in widower category. One third of subjects (34%) were educated up to elementary level followed by 27% up to secondary level, 20% graduates and above and only 19% were illiterate. More than half of subjects (55%) were found to be working whereas 45% were not working. Near about 1/3rd (35%) constituted of laborers, followed by 30% housewives, 11% students, 7% shop- keepers and only 2 % on government jobs. Majority of them (69%) belongs to Hindu religion and remaining 31% belongs to Sikh religion. More than 3/4th (78%) belong to urban habitat and 22% belongs to rural habitat. Majority (80%) of them belonged to state Punjab, whereas 20% were migrants. Near about half (48%) belong to upper- middle class, 37% belongs to middle class, 13% belongs to lower-middle class and only 2% belongs to upper class.
|
Sample characteristics |
n (%) |
|
Age ( years)* |
|
|
18-25 |
36 |
|
26-35 |
27 |
|
36-45 |
10 |
|
>45 |
27 |
|
Gender |
|
|
Male |
54 |
|
Female |
46 |
|
Habitat |
|
|
Rural |
22 |
|
Urban |
78 |
|
Marital status |
|
|
Married |
64 |
|
Never married |
35 |
|
Widow/widower |
01 |
|
Educational status |
|
|
Illiterate |
19 |
|
Elementary |
34 |
|
Secondary |
27 |
|
Graduation and above |
20 |
|
Working Status |
|
|
Working** |
55 |
|
Non working |
45 |
|
Religion |
|
|
Sikh |
31 |
|
Hindu |
69 |
|
Native place |
|
|
Punjab |
80 |
|
Other states*** |
20 |
|
Socio-economic status |
|
|
(as per Udai Pareek scale) |
|
|
Upper class |
02 |
|
Upper- middle class |
48 |
|
Middle class |
37 |
|
Lower-middle class |
13 |
Table 2 reveals that 19% of them were having family history of tuberculosis. Furthermore 87% were having tuberculosis from <1 year, 76% suffered from pulmonary tuberculosis, 85% belonged to category 1 and 87% of tuberculosis patients did not receive/attend any counseling regarding tuberculosis.
Table 2: Distribution of tuberculosis patients as per clinical profile.
|
Variable |
n (%) |
|
Duration of illness (in years) |
|
|
<1 |
87 |
|
1-2 |
07 |
|
>2 |
06 |
|
Disease category |
|
|
Pulmonary |
76 |
|
Extra-pulmonary* |
24 |
|
Treatment category |
|
|
Category 1 (new cases) |
85 |
|
New sputum smear-positive |
59 |
|
New sputum smear-negative |
04 |
|
New extra-pulmonary |
22 |
|
Category 2 (previously treated cases) |
15 |
|
Sputum smear-positive relapse |
04 |
|
Sputum smear-positive failure |
01 |
|
Sputum smear positive after default |
02 |
|
Others** |
08 |
|
Counseling regarding tuberculosis |
|
|
received/attended |
|
|
Yes |
13 |
|
No |
87 |
Perceived Stigma among TB patients
Table 3 reveals that all the TB patients were stigmatized where 99% were somewhat stigmatized (17.80±5.76) while only 1% was highly stigmatized (35.00+00).
Quality of Life
96% of tuberculosis patients showed average Quality of life with mean score 75.11± 16.90 where as only 4% of tuberculosis patients had good Quality of life with mean score 89.00± 00. Hence it shows that maximum of tuberculosis patients had average Quality of life. (Table 3)
Table 3: Distribution of tuberculosis patients as per level of Perceived stigma
|
Attributes |
n |
Mean ± SD |
Mean % |
|
Level of Perceived stigma |
|
|
|
|
Somewhat stigmatized (1-32) |
99 |
17.80 ± 5.76 |
32.96 |
|
Highly stigmatized (33-54) |
01 |
35.00 ± 00 |
64.81 |
|
Level of Quality of life |
|
|
|
|
Average (57-88) |
96 |
75.11± 16.90 |
62.59 |
|
Good (89-120) |
04 |
89.00± 00 |
74.16 |
Table 4 shows the distribution of Perceived stigma score according to different category. 72% of subjects desired to keep people from knowing about their disease. Maximum subjects (99%) discussed their problem with the person they consider closest to them. About 1/3rd (37%) thought less about themselves because of the disease. 43% of subjects feel ashamed or embarrassed of having tuberculosis. 79% believed that their disease will cause adverse effect on others. 63% of the respondents thought that others have avoided them because of the disease and only 6% of the patient felt that some people refuse to visit their home because of tuberculosis. Only 2 % felt that neighbors, colleagues or others in your community will think less of patient’s family because of this
problem. Very less subjects (11%) felt that this problem might cause social problems for their children in the community. Half of subjects (50%) had an opinion of anticipating difficulty in getting married despite cure. 98% felt that their spouse will support them over the course of treatment. About 1/3rd of subjects (31%) said that their partner refuse sex due to tuberculosis. Only 9% of the patient felt that they will have other problem in their marriage even after cure. 6% of the subjects were asked to stay away from work. Very less subjects (7%) felt that even if they don’t (or didn’t) have any other health problems, people are likely to think they do because of your tuberculosis. All the subjects (100%) expect family support that their family will remain with them and be supportive over the course of treatment.
Table 4: Responses of TB patients as per EMIC
|
Items |
Yes (%) |
Possibly (%) |
Uncertain (%) |
No (%) |
|
1. Desire to keep others from knowing |
72 |
12 |
00 |
16 |
|
2. Disclose to confident |
99 |
00 |
01 |
00 |
|
3. Think less of yourself |
37 |
22 |
04 |
37 |
|
4. Shamed or Embarrassed |
43 |
22 |
01 |
34 |
|
5. Others would think less of you |
33 |
26 |
28 |
13 |
|
6. Adverse effect on others |
79 |
08 |
02 |
11 |
|
7. Others have avoided you |
63 |
22 |
00 |
15 |
|
8. Others refuse to visit |
06 |
07 |
17 |
70 |
|
9. Others would think less of patient’s family |
02 |
04 |
11 |
83 |
|
10. Problems for your children |
11 |
05 |
10 |
74 |
|
11. Problem getting married despite cure |
50 |
16 |
15 |
19 |
|
12. Expectations of support from spouse |
98 |
00 |
00 |
02 |
|
13. Partner refuses sex due to tuberculosis |
31 |
03 |
16 |
50 |
|
14. Problem in ongoing marriage |
09 |
03 |
10 |
78 |
|
15. Problem for the relative to marry |
00 |
01 |
04 |
95 |
|
16. Obstracised from work |
06 |
00 |
06 |
88 |
|
17. Presumed other health problems |
07 |
03 |
28 |
62 |
|
18. Expectations of support from family |
100 |
00 |
00 |
00 |
Table 5 depicts that subjects showed better Quality of life for physical domain and worse Quality of life for environmental domain. The highest mean quality of life score was recorded in physical domain of health (69%) with mean score 24.15 ± 3.24, followed by social domain (68%) with mean score 10.20 ± 1.23 and psychological domain (66.33%) with mean score 19.90 ± 2.39 and least affected domain was environmental domain (61.05%) with mean score 24.42 ± 2.83.
Table 5: Mean quality of life among tuberculosis patients
|
Domains of QOL |
Mean ± S.D |
Max. score |
Mean% |
Rank |
|
Physical |
24.15 ± 3.24 |
35 |
69.00 |
1 |
|
Psychological |
19.90 ± 2.39 |
30 |
66.33 |
2 |
|
Social |
10.20 ± 1.23 |
15 |
68.00 |
3 |
|
Environmental |
24.42 ± 2.83 |
40 |
61.05 |
4 |
|
Total |
78.67± 7.27 |
120 |
65.55 |
|
Table 6 depicts there was a negative correlation (r= -0.11, p=0.268) of perceived stigma (78.67 ± 7.27) with quality of life (18.15 ± 5.73) indicating that higher the perceived stigma lower is the quality of life.
Table 6: Relationship between Quality of life and Perceived stigma.
|
Variables |
Mean ± S.D |
Max. score |
Mean% |
r-statistics |
|
Quality of life Perceived stigma |
78.67 ± 7.27 18.15 ± 5.73 |
120 54 |
65.55 33.61 |
r = -0.11 df = 01 p= 0 .26NS |
Table 7 depicts the relationship of perceived stigma with domains of quality of life. There was a weak positive correlation (r= 0.13) of perceived stigma (18.15 ± 5.73) with physical domain of quality of life (figure1) indicating that perceived stigma weakly effects physical domain of QOL. There was a weak negative relationship of perceived stigma with Psychosocial domain (r=-0.07) (Figure 2), Social domain (r= -0.09), (figure 3) and Environmental domain (r= -0.33) quality of life (figure 4) indicating that higher the perceived stigma lower is the quality of life in terms of psychosocial, social and environmental domains.
Table 7: Relationship of perceived stigma with Domains of Quality of life
|
Domains of QOL |
Quality of Life Mean ± SD |
Percieved stigma Mean ± SD |
r- statistics |
|
Physical |
24.15 ± 3.24 |
18.15 ± 5.73 |
0.13 |
|
Psychological |
19.90 ± 2.39 |
18.15 ± 5.73 |
-0.07 |
|
Social |
10.20 ± 1.23 |
18.15 ± 5.73 |
-0.09 |
|
Environmental |
24.42 ± 2.83 |
18.15 ± 5.73 |
-0.33
|