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Not yet recruitingNCT07609264TB stigmaUpdated May 27, 2026

TB Stigma in the UK: Patients Experiences and Everyday Responses

An observational study in TB, Tuberculosis and Stigma, sponsored by Bournemouth University. Not yet recruiting at 1 site in United Kingdom. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2026-05-27.

Sponsored by Bournemouth University · Observational

Study type
Observational
Model
Case-only
Time perspective
Retrospective
Enrollment
20
Ages
18 Years and older
Sex
All
01

Study 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.

Read the detailed description

This study involves qualitative interviews with NHS patients diagnosed with tuberculosis (TB) exploring experiences of TB-related stigma using a constructivist grounded theory approach. The main ethical issues relate to participant vulnerability, informed consent within an emergent qualitative design, confidentiality, power imbalance, and data protection.

TB is a stigmatised condition, and discussing experiences of stigma may cause emotional distress. This has been addressed through the use of sensitive interviewing practices - commonly used by the researcher in their professional role as a TB Consultant Nurse, clear participant control over the interview process, and the right to pause, decline questions, or withdraw at any time. Interviews will be paused if participants show signs of emotional distress.

Participants will be given time to recover and asked whether they wish to proceed with the interview or stop.

Participants will be provided with information on relevant NHS and support services should participation raise concerns or distress.

Because constructivist grounded theory involves iterative (cyclical or repeated) analysis and co-construction of meaning, informed consent is treated as an ongoing process. Participants receive clear explanations of the study aims and methods in accessible language, and consent is revisited verbally at the start of each interview. Participation is voluntary, and withdrawal is possible without consequence to clinical care.

There is a risk of perceived coercion due to recruitment within NHS services and the patient-researcher power imbalance. This is mitigated by separating research from clinical care, using non-clinical recruitment where possible (including advertising through networks), and explicitly stating that participation or non-participation will not affect treatment.

Confidentiality and anonymity are key considerations due to the small number of TB patients within individual NHS Trusts and the risk of deductive disclosure. All data will be anonymised, identifying details removed or altered, and findings reported in a way that minimises identification. Data will be stored securely in accordance with UK GDPR and NHS data governance requirements.

The study also raises ethical considerations regarding representation and interpretation of participant accounts. Reflexive practices are used to address researcher positionality and power in co-constructing data, and findings will be disseminated responsibly to avoid reinforcing stigma. Overall, the study has been designed to minimise risk, protect participant dignity and autonomy, and comply with NHS ethical, legal, and governance requirements.

02

Conditions studied

  • TB
  • Tuberculosis
  • Stigma
  • TB Stigma
  • Low Incidence

Keywords

  • TB
  • Tuberculosis
  • Stigma
  • Low incidence
  • TB stigma
03

In context

Tuberculosis

1,170 studies on the registry are indexed under Tuberculosis; 175 are open to participants now.

This study's planned enrollment of 20 is below the median of 253 across 317 observational studies indexed under Tuberculosis.

Browse Tuberculosis studies →

Lead sponsor

Bournemouth University is the lead sponsor of 52 studies on the registry; 10 are open to participants now.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No
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.

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

This study seeks participants who have been diagnosed with pulmonary TB, extrapulmonary TB, latent TB infection (LTBI), and drug sensitive or drug resistant TB within the last 10 years. Participants may have different cultural and socioeconomic backgrounds and will be resident within a pre-defined TB low-incidence coastal/rural area of the UK.

Inclusion criteria

Inclusion criteria

  • 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

Exclusion criteria

Exclusion criteria

  • 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
05

Study design

Observational model
Case-only
Time perspective
Retrospective
Enrollment
20 participants (estimated)
Patient registry
No

Groups and cohorts

  • 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.

06

What researchers measure

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.

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

07

Study locations

1 site
08

References and documents

Publications

  • 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. PubMed 33097021 ↗
  • 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. PubMed 35734012 ↗
  • 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. PubMed 38746905 ↗
  • 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. PubMed 27810521 ↗
  • 41. Charmaz K. Constructing grounded theory. 2nd ed. London: Sage; 2014
  • 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. PubMed 35797082 ↗
  • Goffman E. Stigma: notes on the management of spoiled identity. New York: Simon & Schuster; 1963
  • World Health Organization. The End TB Strategy. Geneva: WHO; 2014. Available from: https://www.who.int/publications/i/item/WHO-HTM-TB-2015.19
  • Stop TB Partnership. The global plan to end TB 2023-2030. Geneva: Stop TB Partnership; 2022
  • 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. PubMed 39696110 ↗
  • 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. PubMed 40201553 ↗
  • 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
  • UK Health Security Agency. Tuberculosis in England, 2025 report (data up to end of 2024). London: National TB Unit; 2025.
  • World Health Organization. Global tuberculosis report 2024. Geneva: WHO; 2024.

Individual participant data

Plan to share: No

09

Timeline

Tracking since Sep 25, 2026
ElapsedEstimatedEstimated, not yet reached

Start is estimated for Sep 2026; primary completion for Mar 2028, 18 months later.

How these figures are worked out, and which studies are left out of them.

Registered
Apr 14, 2026
First posted
May 27, 2026
StartEst.
Sep 1, 2026
Primary completionEst.
Mar 1, 2028
CompletionEst.
Mar 1, 2028
Last update
May 27, 2026
What these dates mean
Start.
When the first participant enrolled; while estimated, when the study expects to open to recruitment.
Primary completion.
When the last participant was examined or treated to collect data for the study's main question, its primary outcome. A study that stopped early gives the date its data collection stopped.
Completion.
When the last participant's last visit took place, for every outcome, secondary ones and side effects included: the end of the study. Often later than primary completion, sometimes the same day.
Actual and Est.
Actual means the registry says the date has happened. Est. (estimated) is a date the sponsor plans or expects. It can still move, and the sponsor is expected to change it to actual once it has passed.
No changes since tracking began. The registry record was last updated on May 27, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT07609264
Lead sponsor
Bournemouth University
Responsible party
Sponsor
First posted
May 27, 2026
Start date
Sep 1, 2026 (estimated)
Primary completion
Mar 1, 2028 (estimated)
Completion
Mar 1, 2028 (estimated)
Last update
May 27, 2026

Study contacts

David Thomas, MRes, BSc, RN
Contact
david.thomas117@nhs.net
0300 019 4570

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is not yet recruiting, as verified in Feb 2026. You cannot join it, but the record below documents what was studied.

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