TB Stigma in the UK: Patients Experiences and Everyday Responses

NCT07609264 | Not Yet Recruiting

• 1 other identifier: 11172
• Study Type: observational
• Target: 20
• Locations: 1 country
• Sites: 1

Brief Summary

Public understanding of tuberculosis (TB) is shaped by sociocultural norms, educational background, and personal experiences. Misconceptions about TB transmission, disease severity, and treatment side effects are widespread, contributing to stigma and fear of social rejection. Such stigma can lead individuals to conceal their diagnosis, limiting access to support, engagement with healthcare, and overall health literacy. TB-related stigma is recognised as a significant barrier to ending the global TB epidemic, affecting quality of life and access to care. Yet in high-income, low-incidence (HILI) countries like the UK, its prevalence, influence, and lived impact remain largely unexplored. Where stigma appears in research, it is often treated as an emerging theme, leaving a critical gap in understanding how individuals with TB, or those caring or supporting them, experience and respond to it. This study adopts a Constructivist Grounded Theory (CGT) approach to examine TB-related stigma in depth. CGT allows the research to explore how people living with TB make sense of, interpret, negotiate, and resist stigma, capturing the dynamic and contextual ways it shapes their lives, identities, and interactions with healthcare systems. By investigating these meaning-making processes, the study aims to illuminate how stigma operates in the UK, providing insights to inform future stigma-reduction interventions, communication strategies, and supportive healthcare practices, ultimately benefiting patients, communities, and the NHS.

Conditions

TB; Tuberculosis; Stigma; TB Stigma; Low Incidence

Keywords

TB; Tuberculosis; Stigma; Low incidence; TB stigma

Outcome Measures

Primary Outcomes (1)

• TB stigma in the UK: Patients experiences and everyday responses

  The aim of this study is to understand how individuals diagnosed with tuberculosis in a rural and coastal area of Southwest England experience, interpret, and respond to TB related stigma, and to develop a Constructivist Grounded Theory that accounts for the social processes shaping its production and negotiation.

  From enrolment to completion of interviews is likely to be up to 3 months for individual participants. Recruitment runs for 10 months.

Study Arms (1)

People diagnosed with active or latent TB in the last 10 years

Aged over 18. Living in coastal or rural areas of South, Southwest England (TB low incidence areas). Able to understand, converse and consent to participation using the English language.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Initially purposive sampling of patients or ex-patients who are/have been diagnosed with TB in the last 10 years. Theoretical sampling will then follow to explore emergent data themes e.g marginalisation, racism, language barriers etc.

You may qualify if:

• Aged 18 or over at start of study
• Resident in rural or coastal areas within South or Southwest England
• Diagnosed with either active or latent TB within the last 10 years

You may not qualify if:

• Lacks mental capacity or is unwilling to consent to participate in the study
• Under 18 years of age
• Lives in an area of TB high-incidence (above 10 cases/100,000 population) or outside of rural and coastal areas of South/Southwest England

Sponsors & Collaborators

• Bournemouth University: lead

Study Sites (1)

University Hospitals Dorset

Bournemouth, Dorset, United Kingdom

Location

Related Publications (14)

• Spruijt I, Haile DT, van den Hof S, Fiekert K, Jansen N, Jerene D, Klinkenberg E, Leimane I, Suurmond J. Knowledge, attitudes, beliefs, and stigma related to latent tuberculosis infection: a qualitative study among Eritreans in the Netherlands. BMC Public Health. 2020 Oct 23;20(1):1602. doi: 10.1186/s12889-020-09697-z.

  PMID: 33097021 BACKGROUND

• Bedingfield N, Lashewicz B, Fisher D, King-Shier K. Systems of support for foreign-born TB patients and their family members. Public Health Action. 2022 Jun 21;12(2):79-84. doi: 10.5588/pha.21.0081.

  PMID: 35734012 BACKGROUND

• Braga S, Vieira M, Barbosa P, Ramos JP, Duarte R. Tuberculosis screening in the European migrant population: a scoping review of current practices. Breathe (Sheff). 2024 Mar;20(1):230357. doi: 10.1183/20734735.0357-2023. Epub 2024 May 14.

  PMID: 38746905 BACKGROUND

• Craig GM, Daftary A, Engel N, O'Driscoll S, Ioannaki A. Tuberculosis stigma as a social determinant of health: a systematic mapping review of research in low incidence countries. Int J Infect Dis. 2017 Mar;56:90-100. doi: 10.1016/j.ijid.2016.10.011. Epub 2016 Oct 27.

  PMID: 27810521 BACKGROUND

• 41. Charmaz K. Constructing grounded theory. 2nd ed. London: Sage; 2014

  BACKGROUND

• Thomas D, Summers RH. Patients' perceptions and experiences of directly observed therapy for TB. Br J Nurs. 2022 Jul 7;31(13):680-689. doi: 10.12968/bjon.2022.31.13.680.

  PMID: 35797082 BACKGROUND

• Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon & Schuster; 1963

  BACKGROUND

• World Health Organization. The End TB Strategy. Geneva: WHO; 2014. Available from: https://www.who.int/publications/i/item/WHO-HTM-TB-2015.19

  BACKGROUND

• Stop TB Partnership. The global plan to end TB 2023-2030. Geneva: Stop TB Partnership; 2022

  BACKGROUND

• Seyedmehdi SM, Jamaati H, Varahram M, Tabarsi P, Marjani M, Moniri A, Alizadeh N, Hassani S. Barriers and facilitators of tuberculosis treatment among immigrants: an integrative review. BMC Public Health. 2024 Dec 18;24(1):3514. doi: 10.1186/s12889-024-21020-8.

  PMID: 39696110 BACKGROUND

• Ahmed R, Zumla A, Taylor E, Aklillu E, Ippolito G, Satta G. Perspectives on tuberculosis in migrants, refugees, and displaced populations in Europe. IJID Reg. 2025 Mar 19;14(Suppl 2):100576. doi: 10.1016/j.ijregi.2025.100576. eCollection 2025 Mar.

  PMID: 40201553 BACKGROUND

• European Centre for Disease Prevention and Control, WHO Regional Office for Europe. Tuberculosis surveillance and monitoring in Europe 2025 - 2023 data. Stockholm: ECDC/WHO Regional Office for Europe; 2025

  BACKGROUND

• UK Health Security Agency. Tuberculosis in England, 2025 report (data up to end of 2024). London: National TB Unit; 2025.

  BACKGROUND

• World Health Organization. Global tuberculosis report 2024. Geneva: WHO; 2024.

  BACKGROUND

MeSH Terms

Conditions

Tuberculosis; Social Stigma

Condition Hierarchy (Ancestors)

Mycobacterium Infections; Actinomycetales Infections; Gram-Positive Bacterial Infections; Bacterial Infections; Bacterial Infections and Mycoses; Infections; Social Behavior; Behavior

Central Study Contacts

David Thomas, MRes, BSc, RN

CONTACT

0300 019 4570; david.thomas117@nhs.net

Study Design

• Study Type: observational
• Observational Model: CASE ONLY
• Time Perspective: RETROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: April 14, 2026
• First Posted: May 27, 2026
• Study Start (Estimated): September 1, 2026
• Primary Completion (Estimated): March 1, 2028
• Study Completion (Estimated): March 1, 2028
• Last Updated: May 27, 2026

Record last verified: 2026-02

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)