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. 2018 Oct 31;17(1):120.
doi: 10.1186/s12904-018-0374-5.

A public health approach to palliative care in the response to drug resistant TB: an ethnographic study in Bengaluru, India

Joseph M Sawyer  1 , Rahul Asgr  2 , Florence N Todd Fordham  3 , John D H Porter  4
Affiliations

A public health approach to palliative care in the response to drug resistant TB: an ethnographic study in Bengaluru, India

Joseph M Sawyer et al. BMC Palliat Care. .

Abstract

Background: The treatment of Multidrug-Resistant Tuberculosis represents one of the most significant challenges to global health. Despite guidance on improving treatment outcomes, there is little focus on how to support individuals in their suffering. Palliative care is therefore proposed as a necessary component in the global strategy to fight Tuberculosis. We aim to describe the informal resources and networks available to persons affected by Multidrug-Resistant Tuberculosis, how they are accessed and how they are integrated into everyday lives.

Methods: In-depth ethnographic research was conducted in Bengaluru, India. Informal interactions and observations were recorded across a range of palliative care and tuberculosis treatment providers over a month-long period. In addition, ten individuals with Multidrug-Resistant Tuberculosis were asked for in-depth interviews, and five agreed.

Results: Multidrug-Resistant Tuberculosis caused a dynamic chain of events that transgress through physical and psychological domains to cause human suffering. Participants utilised support from their family and friends to build a network of care that was of therapeutic benefit. Informal care networks were similar to the holistic model of care practice by specialist palliative care services and represent an underused resource with enormous potential.

Conclusion: Patient suffering is poorly addressed in current Tuberculosis treatment programmes. A community-based palliative care approach may extend peoples' support networks, helping to alleviate suffering. Further research on existing support structures and integration of these services into Tuberculosis control programmes is required.

Keywords: Drug resistance; MDR-TB; Palliative care; Suffering; TB.

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Conflict of interest statement

Ethics approval and consent to participate

The study was approved by the St. John’s Medical Centre ethics committee (ref 78/2014, June 2014) and by the London School of Hygiene & Tropical Medicine Research Ethics Committee (ref 7617, June 2014). Each participant was asked to read an information sheet and given opportunity to ask questions before giving written consent to take part in the study. Where participants could not read, this was read to them in their preferred language.

Consent for publication

Consent for publication was gained at the time of consent to participate for all participants.

Competing interests

The authors have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
Conceptual framework
Fig. 2
Fig. 2
Schematic representation of themes and subthemes. *prognostic uncertainty, vulnerability in disease disclosure and the trauma of drug treatment. ** a disturbance in human connection, either with the self, with others or within an overarching spiritual network
See this image and copyright information in PMC

References

    1. World Health Organization, “Global Tuberculosis Report 2018,” 2018.
    1. Cohen T, Dye C. “Clinical tuberculosis,” 5th ed., P. Davies, S. Gordon, and G. Davies. Florida: CRC Press; 2014. pp. 19–36.
    1. Coker RJ. From Chaos to coercion: detention and the control of tuberculosis: St. Martin’s Press; 2000.
    1. WHO Global Tuberculosis Report 2017. Global Tuberculosis Report. 2016;2016:5–130.
    1. World Health Organization. The end TB. Strategy. 2015.

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