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 Table of Contents  
REVIEW ARTICLE
Year : 2017  |  Volume : 5  |  Issue : 2  |  Page : 67-69

Family perspectives in the care and support of tuberculosis patients: An Indian context


Independent Public Health Researcher, Bhubaneswar, Odisha, India

Date of Web Publication4-Jul-2017

Correspondence Address:
Janmejaya Samal
C/O Mr. Bijaya Ketan Samal, Pansapalli, Bangarada, Via Gangapur, Dist. Ganjam - 761 123, Odisha
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/2320-8775.202899

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  Abstract 

Tuberculosis (TB) has been a major public health crisis throughout the globe, so also in India. Around one-fourth of TB cases are found in India. Currently, the Government of India implements TB control program through a centrally sponsored program known as the Revised National Tuberculosis Control Program (RNTCP). The program is being implemented at community level through Directly Observed Treatment Short-course (DOTS) strategy and is provided though DOTS providers. Despite all these efforts in the country, failures, relapses, and treatment defaulters are common throughout the nation. Families play a greater role in TB control, as the treatment duration of TB is protracted compared to other clinical conditions. Furthermore, TB patients require a great degree of support in terms of care, nutritional and livelihood support. Sometimes, long-term treatment and more pills on a daily or intermittent basis make the patient uncomfortable to continue with the treatment, and the patient discontinues the therapy in the middle of the course. Thus, to increase treatment adherence, a great degree of family support is necessary. In this study, the role of families in TB care has been narrated, in which both the positive and negative aspects of families have been delineated in an Indian perspective.

Keywords: Family care, home-based care, India, support, tuberculosis


How to cite this article:
Samal J. Family perspectives in the care and support of tuberculosis patients: An Indian context. J Assoc Chest Physicians 2017;5:67-9

How to cite this URL:
Samal J. Family perspectives in the care and support of tuberculosis patients: An Indian context. J Assoc Chest Physicians [serial online] 2017 [cited 2017 Aug 17];5:67-9. Available from: http://www.jacpjournal.org/text.asp?2017/5/2/67/202899


  Introduction Top


The role of families cannot simply be neglected in TB care and support, as TB is a chronic infectious disease and requires protracted treatment. Furthermore, the families play a significant role in the maintenance of optimum level of health as well as in the dynamics of the disease.[1] The families and the individual family members, sex of the individual, and culture strongly influence the health-seeking behavior of patients.[2],[3],[4],[5] The health-seeking behavior allows the patients to choose their preferred healthcare destination and the time of seeking help for TB treatment as per their own wish. In most of the Indian communities, it has been observed that the first point of contact by a chest symptomatic/cough symptomatic patient is a private health facility. Research in different Indian communities further reveals that around 50–80% of TB patients seek medical care at private health facilities.[6],[7] Poor health-seeking behavior has been reported by various studies in India. Many a time, the families play a greater role in heath-seeking behavior of an individual family member. There are two facets of the role of families in health-seeking behavior of a TB/chest symptomatic individual. In this study, the word TB/chest symptomatic individual refers to an individual who develops symptoms suggestive of TB and requires assistance to rule out the presence of TB. One facet of the role of families is a positive facet, in which if the family members are aware of the disease, its mode of transmission, and treatment options available, then they act in favor of the individual patient and help in arranging treatment for that member. The other facet of the role of families is a negative facet, in which many of the unaware family members take a negative stand that leads to disastrous outcomes. The latter is especially observed in female patients of rural Indian communities, where people still have many stigmas associated with TB.[8]

Family response to a social disease

TB patients face dire consequences when detected with TB in many developing and under privileged communities. TB patients encounter different barriers in life, which include isolation and rejection from families and communities.[9] Moreover, the sex of the individual can play a greater role in TB care, as TB is associated with social stigma. Different studies reveal that women usually resort to home remedies at the onset of symptoms.[10],[11] The primary reason is the fear of their treatment status being revealed if they are treated under a designated public health facility that is known for TB care, as this may lead to isolation and other forms of social seclusion in the community they live in. As per one of the studies conducted in Russia, “female gender” acts as a significant predictor of multidrug-resistant tuberculosis (MDR-TB).[12] According to the studies from India, harassment by in-laws, difficulty in getting married, or dismissal from work were the major barriers for women to get appropriate treatment. Social stigma, lack of scientific awareness about the disease, and social commitments were other stated reasons for interrupting and defaulting the treatment.[13] Such revelations highlight the significance of understanding local needs and sociocultural aspects of the community to implement any disease control program, such as for TB, effectively.[14]

Strength perspectives in tb care and support

The role of families cannot simply be neglected in TB care and support, as TB is a chronic infectious disease and requires protracted treatment. The families play a very pivotal role in TB care and support, which begins with the infection, continues with manifestation of signs and symptoms and health-seeking behavior, and ends with the outcome of treatment.[15] Family concern and support are of utmost importance in treatment adherence, quality of care, and treatment completion in TB patients.[16]

Role of family strength in tb care and support

Families can contribute in the following two ways toward TB care: support and care of TB patients. One of the studies conducted in Pune district of Maharashtra revealed that TB patients had their own approach and definition for the care and support to be rendered by the family members. The respondents were of the opinion that good support and care should consist help in routine activities, monetary help, emotional and moral support, and motivation to complete treatment. They were also of the opinion that the care and support could be ascertained in terms of accompanying the patient for treatment, reminding for taking medicines, allowing them to rest, and providing food and necessary support as and when required. Furthermore, according to the respondents, care should include speaking of words of encouragement, providing motivation to fight the disease, and discouraging negative thoughts such as attempting suicide and abandoning home.[17]

Shortcomings of family-based care and support

With the current operational strategy of TB control program in India, it is difficult to elicit the limitations of family members in rendering care and support to TB patients. This is owing to the provision of such services by a group of community health volunteers known as Accredited Social Health Activists (ASHA). In the current format of TB control program in India, which is known as Revised National Tuberculosis Control Program (RNTCP), the anti-TB drugs are being delivered through a strategy known as Directly Observed Treatment Short-course (DOTS). The community health workers who provide TB drugs under this strategy are known as DOTS providers. This strategy limits the role of family members in the care and support of TB patients, as the same is provided by the DOTS providers. The role of family members in the provision of care and support to TB patients could be limited as revealed in one of the studies in Botswana. In a qualitative enquiry using 20 in-depth interviews in Botswana, different opinions emerged regarding the home-based TB care. The study revealed that patients primarily feared home-based TB care (Home-based − Directly Observed Treatment), especially in relation to adherence to TB medication. The respondents’ concerns were mainly related to the level of knowledge and skills of the home-based volunteers. The fear seems logical, as home-based care by the family members cannot be replaced with the care rendered by trained healthcare workers. The level of knowledge and expertise that the trained health workers possess is definitely higher than that of the untrained family members. This is the main concern and fuels the perceived fear among TB patients to receive care from their family members. Second, the respondents felt that the home-based volunteers might not be strict as the health workers. This argument appears rational, as being the family members, they might not behave as strict as compared with the trained health workers from the public system, who might not belong to the families they provide service and will perform their duties without any compromise. The third concern among the respondents was related to the absence of home-based care providers, in case if required. They felt that in the absence of home-based volunteers, there would be nobody to take care of them. Thus, the respondents suggested that in addition to home-based volunteers, the health workers should visit regularly to monitor the progress of treatment.[18]

Scope for further research

Research toward the role of families in care and support for TB patients is relatively limited in India. Studies related to other areas such as influence of sex, culture, and families have already begun in the domain of TB care in India.[8],[14] India is currently struggling with the dearth of community health volunteers, and hence exploring the role and contribution of family members in care and support of TB patients seems rational. However, deploying the family members for the care and support of TB patients in place of community health volunteers would require training of the former. Similarly, their suitability and role can be explored by juxtaposing both of these categories of service providers. Analytical study designs could help in assessing the suitability of the role of family members in place of community health volunteers. Given the current scourge of TB, the home-based TB care with the help of family members in India appears rational, and hence must be researched to bring greater rationality for the same.


  Conclusion Top


The role of families in rendering care and support to TB patients is significant. Especially in an Indian context, wherein more than 25% of the world’s TB cases are found, the role of families for care and support becomes very important. At this juncture, there is a dearth of community health workers in India, and hence the support and care rendered by the family members is a great contribution toward the control of TB in India. Furthermore, though family members may not replace the professional expertise of the healthcare professionals, their easy availability sometimes helps in making the patient treatment adherent and thereby reducing the rate of treatment defaulters and failure, which invariably leads to a TB-free society.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

 
  References Top

1.
Shrivastava SR, Shrivastava PS, Ramasamy J. Scope of family in public health: An epidemiologist’s perspective. Muller J Med Sci Res 2015;6:101-2.  Back to cited text no. 1
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2.
Wang J, Fei Y, Shen H, Xu B. Gender difference in knowledge of tuberculosis and associated health-care seeking behaviors: A cross-sectional study in a rural area of China. BMC Public Health 2008;8:1.  Back to cited text no. 2
    
3.
Ahsan G, Ahmed J, Singhasivanon P, Kaewkungwal J, Okanurak K, Suwannapong N et al. Gender difference in treatment seeking behaviors of tuberculosis cases in rural communities of Bangladesh. Southeast Asian J Trop Med Public Health 2004;35:126-35.  Back to cited text no. 3
    
4.
Hudelson P. Gender differentials in tuberculosis: The role of socio-economic and cultural factors. Tuber Lung Dis 1996;77:391-400.  Back to cited text no. 4
    
5.
Johansson E, Long NH, Diwan VK, Winkvist A. Gender and tuberculosis control: Perspectives on health seeking behaviour among men and women in Vietnam. Health Policy 2000;52:33-51.  Back to cited text no. 5
    
6.
Uplekar M, Juvekar S, Morankar S, Rangan S, Nunn P. Tuberculosis patients and practitioners in private clinics in India. Int J Tuberc Lung Dis 1998;2:324-9.  Back to cited text no. 6
    
7.
Kelkar-Khambete A, Kielmann K, Pawar S, Porter J, Inamdar V, Datye A et al. India’s Revised National Tuberculosis Control Programme: Looking beyond detection and cure. Int J Tuberc Lung Dis 2008;12:87-92.  Back to cited text no. 7
    
8.
Atre SR, Mistry NF. Multidrug-resistant tuberculosis (MDR-TB) in India: An attempt to link biosocial determinants. J Public Health Policy 2005;26:96-114.  Back to cited text no. 8
    
9.
Auer C, Sarol J Jr, Tanner M, Weiss M. Health seeking and perceived causes of tuberculosis among patients in Manila, Philippines. Trop Med Int Health 2000;5:648-56.  Back to cited text no. 9
    
10.
Karanjekar VD, Gujarathi VV, Lokare PO. Socio demographic factors associated with health seeking behavior of chest symptomatics in urban slums of Aurangabad City, India. Int J Appl Basic Med Res 2014;4:173-9.  Back to cited text no. 10
    
11.
Kaur M, Sodhi SK, Kaur P, Singh J, Kumar R. Gender differences in health care seeking behavior of tuberculosis patients in Chandigarh. Indian J Tuberc 2013;60:217-22.  Back to cited text no. 11
    
12.
Chaisson R. The Russian correction: An evolving paradigm for TB control; 2004. Available from: http://www.hopkins-tb.org.  Back to cited text no. 12
    
13.
Uplekar MW, Rangan S. Tackling TB: Search for solutions. Bombay: The Foundation for Research in Community Health; 1996.  Back to cited text no. 13
    
14.
Oxlade O, Murray M. Tuberculosis and poverty: Why are the poor at greater risk in India? PLoS One 2012;7:e47533.  Back to cited text no. 14
    
15.
Koller DF, Nicholas DB, Goldie RS, Gearing R, Selkirk EK. When family-centered care is challenged by infectious disease: Pediatric health care delivery during the SARS outbreaks. Qual Health Res 2006;16:47-60.  Back to cited text no. 15
    
16.
Somma D, Thomas BE, Karim F, Kemp J, Arias N, Auer C et al. Gender and socio-cultural determinants of TB-related stigma in Bangladesh, India, Malawi and Colombia [Special section on gender and TB]. Int J Tuberc Lung Dis 2008;12:856-66.  Back to cited text no. 16
    
17.
Kaulagekar-Nagarkar A, Dhake D, Jha P. Perspective of tuberculosis patients on family support and care in rural Maharashtra. Indian J Tuberc 2012;59:224-30.  Back to cited text no. 17
    
18.
Kabongo D, Mash B. Effectiveness of home-based directly observed treatment for tuberculosis in Kweneng West subdistrict, Botswana. Afr J Prim Health Care Fam Med 2010;2:168.  Back to cited text no. 18
    




 

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