‘People listen more to what actors say’: A qualitative study of tuberculosis-related knowledge, behaviours, stigma, and potential interventions in Puducherry, India

ABSTRACT India has made substantial advancements in reducing the burden of tuberculosis (TB), but persons living with active TB (PLWATB) still face myriad challenges in seeking and receiving care, including TB-related stigma. To meet the END TB targets, it is critical that PLWATB engage in care and are able to adhere to treatment. This qualitative study aimed to understand TB-related stigma (perceived, enacted, and internalised) and possible interventions to reduce stigma in Puducherry and Tamil Nadu, India. We conducted 47 in-depth interviews with PLWATB and household members and eight focus group discussions: two each with PLWATB, their household members, healthcare workers, and key informants. We found varying TB-related knowledge: the vast majority of interview participants reported incorrect modes of transmission, although most were also aware that TB is curable. Participants reported high levels of perceived stigma, with nearly two-thirds of PLWATB choosing to hide their disease to avoid being stigmatised in their community. Participants supported interventions including celebrity advocacy and school-based programming to increase community knowledge and reduce enacted stigma as well as support groups and counselling to reduce internalised stigma in PLWATB. This study has the potential to inform future interventions to reduce TB-related stigma in India.

[1]  Rahul Pratap Singh Kaurav,et al.  NVivo , 2022, Encyclopedia of Tourism Management and Marketing.

[2]  M. Reale.  Annual Report 2020 , 2021, AIMS Allergy and Immunology.

[3]  Delbert Miller,et al.  Qualitative Data Analysis Software , 2002 .

[4]  J. Jones,et al.  Attitudes toward HIV testing, awareness of HIV campaigns, and using social networking sites to deliver HIV testing messages in the age of social media: a qualitative study of young black men , 2018, Health education research.

[5]  A. Kumar,et al.  Beyond 'cure' and 'treatment success': quality of life of patients with multidrug-resistant tuberculosis. , 2019, The international journal of tuberculosis and lung disease : the official journal of the International Union against Tuberculosis and Lung Disease.

[6]  E. Stevens,et al.  Public Reactions to and Impact of Celebrity Health Announcements: Understanding the Charlie Sheen Effect , 2019, Howard Journal of Communications.

[7]  J. Turan,et al.  Exploring Manifestations of TB-Related Stigma Experienced by Women in Kolkata, India , 2018, Annals of global health.

[8]  Clara Delavallade,et al.  Knowledge about tuberculosis and infection prevention behavior: A nine city longitudinal study from India , 2018, PloS one.

[9]  Michael P. Boyle.  Enacted stigma and felt stigma experienced by adults who stutter. , 2018, Journal of communication disorders.

[10]  N. Thorogood,et al.  Qualitative Methods for Health Research, 4th ed. , 2018 .

[11]  T. Burki.  The global cost of tuberculosis. , 2018, The Lancet. Respiratory medicine.

[12]  Sarah E. Van Ness,et al.  Predictors of delayed care seeking for tuberculosis in southern India: an observational study , 2017, BMC Infectious Diseases.

[13]  Bolin Cao,et al.  Social Media Engagement and HIV Testing Among Men Who Have Sex With Men in China: A Nationwide Cross-Sectional Survey , 2017, Journal of medical Internet research.

[14]  Kathryn L. Lookadoo,et al.  “I’m Demi and I Have Bipolar Disorder”: Effect of Parasocial Contact on Reducing Stigma Toward People With Bipolar Disorder , 2017 .

[15]  R. Bollinger,et al.  Resident doctors' attitudes toward tuberculosis patients. , 2017, The Indian journal of tuberculosis.

[16]  S. Bhaumik,et al.  India's plan to eliminate tuberculosis by 2025: converting rhetoric into reality , 2017, BMJ Global Health.

[17]  P. Lefèvre,et al.  Coping with tuberculosis and directly observed treatment: a qualitative study among patients from South India , 2016, BMC Health Services Research.

[18]  D. Sharma.  New face of India's tuberculosis campaign raises hopes. , 2016, The Lancet Respiratory Medicine.

[19]  Sebastian Bonhoeffer,et al.  The Role of Adherence and Retreatment in De Novo Emergence of MDR-TB , 2016, PLoS Comput. Biol..

[20]  S. Satyanarayana,et al.  Patient and Provider Reported Reasons for Lost to Follow Up in MDRTB Treatment: A Qualitative Study from a Drug Resistant TB Centre in India , 2015, PloS one.

[21]  J. Sharifi‐Rad,et al.  Impact of Educational Intervention on Patients Behavior with Smear-positive Pulmonary Tuberculosis: A Study Using the Health Belief Model , 2015, Materia socio-medica.

[22]  N. Kapata,et al.  Assessing the Consequences of Stigma for Tuberculosis Patients in Urban Zambia , 2015, PloS one.

[23]  W. Cumberland,et al.  The HOPE social media intervention for global HIV prevention in Peru: a cluster randomised controlled trial. , 2015, The lancet. HIV.

[24]  M. Hennink,et al.  Socio-cultural influences on adherence to tuberculosis treatment in rural India , 2014, Global public health.

[25]  A. Aggarwal,et al.  Assessment of health-related quality of life in patients with pulmonary tuberculosis under programme conditions. , 2013, The international journal of tuberculosis and lung disease : the official journal of the International Union against Tuberculosis and Lung Disease.

[26]  D. Quinn,et al.  Anticipated stigma and quality of life among people living with chronic illnesses , 2012, Chronic illness.

[27]  J. Cramm,et al.  TB treatment initiation and adherence in a South African community influenced more by perceptions than by knowledge of tuberculosis , 2010, BMC public health.

[28]  S. Khan,et al.  A sociological study on stigma among TB patients in Delhi. , 2010, The Indian journal of tuberculosis.

[29]  N. Chang,et al.  Assessment of changes in knowledge and stigmatization following tuberculosis training workshops in taiwan. , 2009, Journal of the Formosan Medical Association = Taiwan yi zhi.

[30]  M. Weiss,et al.  Gender and socio-cultural determinants of delay to diagnosis of TB in Bangladesh, India and Malawi. , 2008, The international journal of tuberculosis and lung disease : the official journal of the International Union against Tuberculosis and Lung Disease.

[31]  E. Bateman,et al.  Comparison of symptoms and treatment outcomes between actively and passively detected tuberculosis cases: the additional value of active case finding , 2008, Epidemiology and Infection.

[32]  P. V. van Helden,et al.  A Threshold Value for the Time Delay to TB Diagnosis , 2007, PloS one.

[33]  L. Chauhan.  Public–private mix DOTS in India. , 2007 .

[34]  R. Chaisson,et al.  Delayed tuberculosis diagnosis and tuberculosis transmission. , 2006, The international journal of tuberculosis and lung disease : the official journal of the International Union against Tuberculosis and Lung Disease.

[35]  P. R. Narayanan,et al.  Perceptions of tuberculosis patients about their physical, mental and social well-being: a field report from south India. , 2005, Social science & medicine.

[36]  Judith Green,et al.  Qualitative methods for health research , 2004 .

[37]  N. K. Jain,et al.  Clinical and genetic risk factors for the development of multi-drug resistant tuberculosis in non-HIV infected patients at a tertiary care center in India: a case-control study. , 2003, Infection, genetics and evolution : journal of molecular epidemiology and evolutionary genetics in infectious diseases.

[38]  M. Allen,et al.  When a Celebrity Contracts a Disease: The Example of Earvin "Magic" Johnson's Announcement That He Was HIV Positive , 2003, Journal of health communication.