|Year : 2017 | Volume
| Issue : 2 | Page : 51-57
Determinants of treatment noncompliance among pulmonary tuberculosis
Manu Bala1, Jaspreet K Sodhi2, Kapil Sharma3
1 Lecturer, Ramsnehi College of Nursing, Bhilwara, India
2 Vice Principal, Sidhu College of Nursing, Doraha, India
3 Asst Professor, CON, DayanandMedical College, Ludhiana, India
|Date of Web Publication||9-Jun-2020|
Source of Support: None, Conflict of Interest: None
Tuberculosis remains a major public health problem worldwide. According to WHO, one third of the world’s population is infected by latent Tuberculosis. There is an alarming increase in incidence of multi drug resistant Tuberculosis patients in Ludhiana district. The main reason for this is noncompliance of patients to therapy. Qualitative study provides deeper insight into exploration of factors responsible for noncompliance. The aim of this study was to explore the determinants of treatment noncompliance among Pulmonary Tuberculosis patients registered under Revised National Tuberculosis Control Programme, Ludhiana, Punjab. Sample of thirty five patients with Pulmonary Tuberculosis with treatment noncompliance, attending DOTS clinics, under the Revised National Tuberculosis Control Programme, Ludhiana, Punjab were included by purposive sampling technique till saturation of data was obtained. The results of findings depicted six themes namely psychological effects, physical problems, psychosocial problems, role of health professionals, financial burden, and health system related factors. The study concluded that there were various determinants for treatment noncompliance. It can be recommended that the counselling session and regular follow up are needed to reduce the noncompliance and improve the quality of patient life.
Keywords: Pulmonary Tuberculosis, noncompliance, determinants, qualitative study
|How to cite this article:|
Bala M, Sodhi JK, Sharma K. Determinants of treatment noncompliance among pulmonary tuberculosis. Indian J Cont Nsg Edn 2017;18:51-7
|How to cite this URL:|
Bala M, Sodhi JK, Sharma K. Determinants of treatment noncompliance among pulmonary tuberculosis. Indian J Cont Nsg Edn [serial online] 2017 [cited 2021 Jan 24];18:51-7. Available from: https://www.ijcne.org/text.asp?2017/18/2/51/286270
| Introduction|| |
Health is a fundamental human right and a worldwide social goal. One of the major health problem in India is the prevalence of communicable diseases. Tuberculosis (TB) is a chronic communicable disease that requires continuous medical care. Tuberculosis is one of the most widely occurring infectious diseases. According to Centre for Disease Control (CDC), globally at least 3 million people die from the disease each year. India is the second-most populous country in the world. Incidence of new TB cases in India is much more than any other country in the world (TB India, 2012).
In Ludhiana, during the first quarter of 2016, a total of 1404 patients were registered in Revised National Tuberculosis Control Programme (RNTCP). New smear positive pulmonary patients were 498, out of which 289 were males and 209 were females. There is an alarming increase in incidence of Multi Drug Resistant Tuberculosis (MDR- TB) patients in Ludhiana district. The main reason for this increase is non-compliance of patients to therapy. In a country like Ethiopia, lack of laboratory reagents and anti-TB drug supplies, absence of trained and motivated health workers, and lack of access to TB diagnostic tools at peripheral hospitals were identified as challenges in implementing effective TB control programme (Gebreegziabher, Yimer, & Bjune, 2016).
It is imperative to understand the reasons for this non- compliance and a deeper insight through a qualitative research approach was thought essential. A qualitative study done in Karachi, Pakistan revealed that the reasons for patients discontinuing the treatment was side effects of the drugs, financial issues, and beliefs about the disease and treatment (Chida et al., 2015). The reasons identified in this study differ from the challenges faced in an African country. Little is known about the problems that patients with Tuberculosis who is started on different treatment regimen in India encounter. Therefore a qualitative study to explore the determinants of treatment noncompliance among Pulmonary Tuberculosis patients registered under, RNTCP Ludhiana, Punjab was undertaken.
The objective of the study was to explore the determinants of treatment noncompliance among Pulmonary Tuberculosis patients registered under Revised National Tuberculosis Control Programme
| Methods|| |
A qualitative phenomenological research design was used in this study to explore the determinants of treatment noncompliance among pulmonary TB patients registered under RNTCP, Ludhiana, Punjab. All pulmonary TB patients attending DOTS clinics registered under RNTCP, Ludhiana Punjab were considered as the population for the study. A written permission was obtained from the District TB officer, Ludhiana and the Ethical Committee of INE, GTB Hospital, Ludhiana, Punjab. Purposive sampling was used to include 35 patients with pulmonary TB with treatment noncompliance, attending DOTS clinics, under the RNTCP. Patients who gave consent and could speak and understand Hindi or Punj abi were included in the study.
Data were collected till saturation was obtained. The tools used in the study consisted of socio-demographic data of the patients and semi-structured interview schedule. The semi- structured interview schedule that was formulated had open ended questions related to the treatment of their illness. These questions were considered as key questions and other questions were added if necessary for each participant to get in-depth data. There was a chance for expansion and adventuring into new areas. The semi structured schedule that was developed was validated by medical and nursing experts in January, 2016. By using purposive sampling five patients were selected each day. Interviews were conducted and transcribed into verbatim. The pilot study assisted the investigator to identify challenges in conducting qualitative interviews, modify questions, and prepare for data generation.
The interviewer is the primary instrument of data collection in a qualitative study (Mayan, 2009). This demands a degree of attention to data collection and data analysis methods. There must be mutual trust while conducting the interview and this can be achieved by interviewing patients more than once. The data collection in this study was done during the month of February-March 2016, after obtaining ethical clearance and formal permission for conducting the study. Thirty five subjects were interviewed in the various DOTS clinic registered under RNTCP Ludhiana, Punjab. Data collection was done as per the convenience of the clients. In depth individual interviews were conducted with each patient. The level of data saturation was determined by the main researcher and by another independent researcher in a process carried out in parallel with data collection. It was apparent that the patients were depressed and had many problems related to their illness and treatment.
The audio-taped recordings were transcribed into verbatims and analysed, using Colaizzi’s procedural steps i.e. developing significant statements, formulating meanings of statements, grouping into cluster of themes, interpreting themes into exhaustive description of phenomenon, validating, and incorporating the changes offered by patients into final description of the essence of the phenomenon (Turunen, Perala, & Merilainen, 1994). The patients’ responses regarding their challenges and problems related to treatment compliance were grouped as statements and then themes.
| Results and Discussion|| |
Majority of patients in the study were more than 18-40 years of age, male, had primary education, belonged to Hindu religion, married, and service holders. Majority of patients were earning more than Rs. 5000/ month and were from joint family. Six main themes emerged from the data: Psychological effect, Psychosocial problems, Physical problems, Financial burden, Health system related factors, and Role of Health Professionals. The themes are narrated below:
1. Psychological effects
The main theme of the study was found as psychological deprivation and was identified to be the major determinant for non-compliance in almost all the patients at different level. The psychological effects were divided into five sub themes.
The individual on treatment felt embarrassed, and depressed due to taking treatment for tuberculosis. They felt a sense a of rejection and isolation.
“The behavior of my family members was very bad when I was ill. Then I went to my relatives’ house and told them that I was ill and could not do anything. My relatives asked me to leave their house at 10 pm. They feared that their children might acquire TB from me. Their servant convinced my relatives to allow me for night stay. My relative isolated me in verandah with one pillow and blanket and some food to eat.”(Patient cries bitterly). I was depressed and crying.”(P1)
Another participant said “I didn’t call anyone because of my illness. I am always in my house and never went outside.” (P13)
One of the client said, “I took medicine from private doctor. I couldn’t afford to purchase medicine daily. I missed medicine for 15 days. Then, I came to know that medicines were available free of cost from Civil Hospital. But, it was too late. All investigations were done again. I was again diagnosed with TB. This was my mistake.”(P16)
Other patient said. “I hate myself because I am suffering from TB and people avoid me. Everyone hates me.”(P2)
Anxiety and confusion
Many patients were anxious about the treatment schedule and were confused about when and how to continue treatment.
One of the client said “Due to the death of my mother, I left the medicine in between. I was confused about treatment regimen”(P2)
“Some doctor told me that the course was nine months. Other told me for six months. I got confused.” (P20).
Acceptance and positive attitude towards the disease
Some patients expressed a positive attitude towards treatment and realized that it was life or death for them.
“I had to save my life, I had to take medicine to get well soon.”(P1)
2. Psychosocial problems
Participants also expressed many social issues like Social stigma, social discrimination and social avoidance Stigma was another theme that was profound in patients’ expression.
One of the patient said, “The behavior of my family members was very bad when I was ill. Then I went to my relatives’ house and told them that I was ill and could not do anything. My relatives asked me to leave their house at 10 pm.”(P2)
Patients had problems in their work place or educational institutions and experiences stigmatising behaviour.
“I feel helpless after suffering from TB. Everyone cared for me when I was healthy, but when I suffered from TB then my boss expelled me from job. Every one avoided contact with me.”(P4)
One of the patient said ‘‘Because of my disease I had to leave my graduation mid-way, I had no job. I was worried about my future. I thought of resuming my studies.”(P5)
Worry about future
Patients were not sure when they would be disease free and were worried about their future.
One the patient said “I would vomit frequently. My mother and father were very upset. To see my condition and they often wept. They were worried about my future and also of my brother.”(P6)
Misconception about the disease condition
Patients were also misinformed and had lack of knowledge about the illness.
One of the patient said, “I don’t know the reason. Some people say that I am working, that the chemical release from leather in the shoe shop. I am working far, may be cause of the disease.'(P7)
Effects on the spiritual life
One of the patient said that, “It is good to talk to you that you are doing research on it and when you tell about our experiences and then the people would come to know about our suffering. I think what I say it can increase the will-power of others and the treatment of this disease is available. We hope that it was on the hands of god and we can’t take drugs third time.”(P11)
One of the patient said, “Every human commits mistakes, But God will help me”. (P9)
One of the patient said “Being a lady I am feeling worried about my domestic chores. I am in tension. I don’t know who will cook the food and who will manage the house.”(P4)
3. Physical/ Physiological problems
Many participants shared about the physical symptoms they struggled with while taking treatment.
Fatigue and Stress
Fatigue and related stress was overwhelming for some patients. They expressed that fatigue prevented them from going out of the house and also was one cause of stopping treatment.
One of the client said “I lack the energy to talk or to work.”(P13)
Other patient said, “Now I am very stressed. I usually stay at home. I don’t like to interact with the family members.”(P8) One of the patients said “I had taken the medicines for 3 months then I left it. Slowly I felt weakness, tiredness and also suffered from breathing problems.”(P18)
“I was on bed always and couldn’t do any work. My parents were in great tension. My father got heart attack and was admitted to hospital. My sister has to do all house hold chores. They did not allow me to go to hospital. Then my father had paralytic attack. I strengthened myself and got on my feet to take care of my father. If one has strong will power one can recover from any disease.”(P22)
Loss of appetite, nausea, and vomiting
The gastro intestinal side effects of the drug caused great distress to the patients and was major determinant in missing medication. The patients who had comorbidities found it difficult to take multiple drugs.
One of the patient said, “I again suffered from loose motion from 15 days then someone told me to eat khichdi and curd. I was not walking properly and I had lost my appetite.”(P34)
A patient who was also a diabetic said “I am diabetic. I take medicine for diabetes also. It is really very difficult to take so many pills daily. I feel nauseated.”(P15)
One of the patient said “At night, I suffered from vomiting which were of red colour and suffered from loose motion also. After this I felt unconscious for 2-3 hours. When I was lying on the bed then there was a lot of pain in my head.”(P35)
Another patient said, “I took medicine for one month from civil hospital, but I had lot of side effects such as nausea, vomiting, fatigue.”(P7)
Patients also felt their conditions did not improve because of poor nutrition. Many did not have money to buy nutritious food.
One of the patient said that, “Everything was turned at home bad because of this disease. The study of kids has been affected and my home lacks care. How one man can manage all of this? So I am unable to recover, fever and cough is occurring again and again. If I ate healthy food then I will never suffer from this disease.'(P35)
One of the patient said about another “I did not suffer from cough and fever. I only felt burning in chest (I used to drink limca so many times). I did not like to take chapatti and water.”(P24)
Other side effects
Patients also had other side effects which hindered them from continuing the treatment.
One of the patient said that, “There were many side effects of medicines. She told me that she suffered from menstrual abnormalities, depression and cyst in breast body rashes during the medication course.”(P7)
Another said, “There were so many side effects of that medicine. My face was covered with pimples and big one pimples were on my back. My Four and five teeth dislocate. I developed thyroid problem.”(P 12)
Pain or discomfort
One of the patient expressed , “I had pain. I ate medicine irregularly some time half the dose, sometime full. I did not feel relief. I got tested four times. But last time the result was TB negative. But I had doubts. I took medicine for six months. I was in pain even after that.”(P20)
Impact on overall health
One of the patient said that, “Earlier I was a healthy person and never ate medicine for even fever. Now I am no longer healthy I wonder at my health condition. I ate simple food, no spicy things. Even then I do not feel well.”(P35)
One of the patient said that, “My condition deteriorates day by day. I had evening fever and cough. I even had chest pain. I went to civil hospital Doctor diagnosed me with tuberculosis. It was really frustrating.”(P29)
4. Financial burden
Almost all patients talked about the financial burden that was involved in continuing the treatment. Although the drug was given free of cost the travel cost and cost for nutritious food and also getting treatment for any side effect caused them to discontinue treatment.
One patient said, “I have come to make my card here in Civil Hospital. But I have to spend money on bus, rickshaw fare etc. I cannot afford this. All the process seems costly. I earned 300 Rupees per day. How can I afford healthy food for and other expenses?”(P30)
Another patient said “But now our finances are in bad condition. I cannot get good nutritious diet.”
5. Health system related factors
Problems related to private health sectors
Patients talked about both public and private health sectors. Cost issue was associated with the private sector and attitude was the problem with the public sector.
One of the patient said, “The medicine of private hospital was very costly and X-ray was also costly. The cost of medicine was 300-400/- per week. I was not having enough money and I was not able to work.”(P3 0)
Problems related to Government Health Sectors
One of the patient said, “Here in Civil Hospital everyone misbehaves with patients. I wrote my name in Hindi and the lab technician told me that he cannot understand, but what can I do? I don’t know Punjabi. It is common saying that “doctors are God” then why don’t they help us? Nobody understands my problems.”(P13)
Inadequate supply of medicines
There were issues with the necessary drug supply.
A patient said, “Delay in supply of medicine at hospital sahnewal caused trouble to me. Last week I received one week medicine and this week there is no medicine. They said that the medicine has not come from the doctor on time and it can happen many times.”(P9)
6. The Role of Health Professionals
The health care professionals also played a major role in determining the treatment compliance.
Lack of guidance related to tuberculosis
Patients expressed that there was no clear information and guidance on the drugs, regimen and side effects which caused confusion in many patients.
One of the patient said, “I was confused about the treatment regimen by the staff. Sometimes they told me it was for three months and sometime for 8 months.”(P14)
Lack of awareness related to tuberculosis
One of the patient said that, “I went to Government hospital in U.P., they only did the check up and we took the medicine from outside the hospital because the medicine was not available there. Doctor told me that had to take the TB medicine continuously and again I took medicine than for some time and he told me that I was all right.”(P31)
Behavior of health professionals
The behaviour of health professionals also caused lot of concern in patients.
Other client said “Doctor seems to be very rude. They speak rudely. I feel bad sometimes.”(P20) Social support a positive attribute amidst challenges
The challenges that were mentioned by the patients in the study were similar to what was identified in a study by Chida (2015). Stigma, isolation, side effects of drugs, lack finance and lack of support from the hospitals and the health care professionals were identified as major determinants for non- compliance to TB treatment. Although some patients expressed indifferent attitudes among their family members many patients were supported by their family members during their illness struggle. Positive attitude was encouraged and even some health care members exhibited a sympathetic attitude which encouraged and motivated the patients during their treatment. The following quotes depict this social support:
“My family members, friends and colleagues are all very supportive. Their dealing is very supportive. Now, it is my responsibility to prevent spread of tuberculosis amongst them.”(P2)
“My father didn’t treat me well but my mother behaves well. My father used to drink and would beat my mother. My mother was also suffering from TB.”(P3)
“Doctor suggested me to take medicine daily. He told me that he would give me new medicine when I finish the earlier doses”. (P2)
“My family members were always with me and never ignored me. They never disowned me or left me alone. At night, I suffered from vomiting which were of red colour and suffered from loose motion also. After this I felt unconscious for 2-3 hours. When I was lying on the bed then there was a lot of pain in my head. They helped me too much. Without their help and support, I would not have been alive.”(P 15)
Family forms an essential part of a patient’s life. The findings suggest that majority of patient’s family, relatives and sometimes friends were supportive. The key message is to know how to harness the support of the family members in enhancing drug compliance for patients with tuberculosis. If the supporting members are given adequate encouragement and motivation by education and demonstration, they can be supportive in continuance of treatment as much as they are supportive when patients are ill with many distressing symptoms.
- Some clients were not willing to participate in the study as they found no interest and did not want their conversation to be audio taped
- The data collection was limited to only one month period due to time constraints and so each study patient was met only once and interviewed
- The study was limited only to the treatment noncompliance among Pulmonary Tuberculosis patients registered under RNTCP, Ludhiana, Punjab
The recommendations the researcher would like to include here are.
- Counselling services for patients with Pulmonary Tuberculosis are a must and the need of the hour
- Patient’s welfare policies should be developed especially for treatment noncompliance among Pulmonary Tuberculosis patients
- There should be nationwide network for health education programme on Tuberculosis prevention so that people become more aware about the DOTS services
- Television, Newspaper and Magazines etc. should help in spreading awareness regarding Tuberculosis
- Patient’s welfare services should be incorporated for the effective rehabilitation of the patients
- Research should be encouraged in this field so that more constructive measures can be taken at various aspects in relation to managing the problems
| Conclusion|| |
The researcher took the medium of ‘Phenomenological Research Design’ to unmask the minds of the patients under study and interpreted them. Colaizzi’s procedural steps were adopted to analyze the data as it gives a clear cut step of analysis of the transcripts of recorded data. Majority of patients had psychological burden due to treatment noncompliance and some patients had physical problem and financial burden. As the family members were found to be supportive in many families they need to be included in motivating patients to comply with treatment.
Conflicts of Interest: The authors have declared no conflicts of interest.
| References|| |
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