Correspondence Address:
Janmejaya Samal
C/O - Mr. Bijaya Ketan Samal, At - Pansapalli, PO - Bangarada, Via - Gangapur, District - Ganjam, Pin - 761 123, Odisha
India

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Dear Editor,

In case of tuberculosis (TB), being a chronic infectious disease, the role of the family in care and support becomes very important. Moreover, the family plays an important part in maintenance of the optimum level of health as well as in the dynamics of the disease. [1] The families and the individual family members strongly influence the health-seeking behavior of patients. 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 is a private health facility. However, this case study is about the health-seeking behavior of a TB patient who was reported with high patient compliance and undergoing treatment at a public sector health facility. Poor health-seeking behavior has been reported by various studies, however, this particular lady, with the support of her family, got good patient compliance and is now in the continuation phase of treatment as per the Revised National Tuberculosis Control Program (RNTCP). This case study delineates about the perspectives of her health-seeking behavior and the story behind her good patient compliance and the role of her family in this endeavor.

A semi-structured interview schedule consisting of 10 questions was used to interview the patient in-depth. The questions were pertinent to the demographic profile of the patient, the time of TB detection, reaction of her family to TB being detected, role of family members in TB care, significance of family in TB care, role of health system in TB care, and above all, her role in spreading the message in the community where she resides.

Reaction of the family toward the TB patient (response of families to a social pathology)

In many developing and underprivileged communities, TB patients face dire consequences once detected with TB. They face various barriers in day-to-day life, as well as isolation and rejection from their respective families and communities. [2] In this particular case study, the respondent had to face similar consequences in her family after she got detected with TB. As she says;

"They were not happy with the test results, especially my mother-in-law and she started abusing my maternal family, my parents and blamed that I have contracted this infection from my maternal home and now going to kill everybody in her family."

Furthermore, gender plays a significant role in TB care, as TB is associated with social stigma. Studies reveal that women prefer home remedies at the onset of symptoms. [3],[4] This is primarily due to the fear of getting treated from designated public sector health facilities which may reveal the truth of them as being the TB patient leading to social isolation. A study in Russia reported ''female gender'' as a significant predictor of multidrug-resistant tuberculosis (MDR-TB). [5] In the Indian context, harassment by in-laws, difficulty in getting married, or dismissal from work were reported as major barriers for women to get appropriate treatment. [6]

Perspective of family strength in TB care

TB being a chronic infection requiring long term treatment, the role of families cannot be neglected. Beginning from the infection, manifestation of signs and symptoms, health-seeking behavior, and outcome of treatment, the family plays a pivotal role. [7] In this particular case study, the respondent has also understood the importance of the strength of the family in her treatment adherence and outcome as well. As she says.

"This is important sir, as without the support of my family members I could not have taken the medicines properly. They have also helped me accompanying to the hospital for regular checkups and sputum examination. Family support makes me feel better and I always feel nothing is going to happen to me as my husband is with me."

Concerns and support of families are required for treatment adherence, quality of care, and treatment completion in case of TB patients. [8]

Contribution of family strength in TB care

The contribution of families toward TB care can be twofold; support and care. In a similar study conducted in the Pune district of Maharashtra, India, the study participants defined care and support to be rendered by their family members and as expected by them toward TB care. Respondents defined good support and care in terms of helping them in routine activities, monetary help, emotional and moral support, and motivation to complete treatment. The respondents added that the support could be measured in terms of accompanying the patient for treatment, reminding for taking medicines, allowing them for rest, providing food, and necessary support as and when required. Similarly, they defined care as something such as speaking of sweet words of encouragement, motivation to fight the disease, and discouragement for negative thoughts such as attempts for suicide and abandoning home. [9] In this particular case, despite initial resistance, the family members came forward, especially the husband and the mother-in-law, as narrated by the patient to help her fight for the disease. As she says.

"Yes my husband and as I mentioned he has a great role and supported a lot in my regular treatment and my sputum examination. He has always tried to accompany me to the hospital if he could find time to do so. He has arranged me proper food and taken utmost care so that I can take the medicines regularly without missing a single dose. Now my mother-in-law also supports a lot in this and in the absence of my husband she accompanies me to the hospital."

Limitations of family based care for TB

In this particular case study, limitation of the role of the families in providing care and support could not be elicited except a short span of resistance at the initial phase of detection of TB to the patient. This is primarily because the treatment was being rendered by a community health worker, known as Accredited Social Health Activist (ASHA). Under the RNTCP, anti-TB drugs are being provided under directly observed treatment short-course (DOTS) strategy. The community health worker who provides medication under this scheme is called a DOTS provider. Hence, the role of family member(s) in providing medication to the TB patients in India is limited and is being provided by the DOTS providers only. There could be several of limitations to this if the same is being provided by the family members. In a qualitative enquiry at Botswana, having 20 in-depth interviews, the respondents had different opinions about home-based TB care. The study revealed that patients feared that being treated for TB under Home-based Directly Observed Treatment (HB-DOT) could affect their adherence to medication. The concerns of the respondents were primarily related to the level of knowledge and skills of the home-based volunteers. The level of knowledge and skills that the trained health workers have is definitely higher than that of the home-based volunteers, which is the main reason of concern and fuels the perceived fear among the TB patients to receive care from them. Another concern of the TB patients in the same study was that the home-based volunteers may not be strict enough as the health workers. This is true as well in the sense that being a member of the family they may not be as strict as the trained health workers from the public system, as they do not belong to that family and will perform their duties without any compromise. The third concern pointed by these respondents was that in the absence of home-based volunteers there would be nobody to take care of them. Furthermore, the respondents suggested that in addition to home-based volunteers, the health workers should visit regularly to monitor the progress of treatment. [10]

Way ahead and further research

Albeit, research on health-seeking behavior and the influence of gender, culture, and families have begun in India, especially in the domain of TB care, however, studies on the role of families in care and support and the strength of families and culture is limited. [9] At the dearth of community health workers in India, research exploring the role of families in care and support is the need of the hour. This could be done by juxtaposing the role of health workers from public sectors and volunteers from families and communities so that the lacunas could be found out which would otherwise help in designing training programs for the home-based volunteers. Moreover, TB is a global public health crisis and around 25% of TB cases are found in India; hence, research on the role of families in rendering care and support and exploring the possibilities of utilizing home-based volunteers seems rational in the Indian context.

Financial support and sponsorship

Nil.

Conflicts of interest

There are no conflicts of interest.

References