TBTB stigmaNCT07609264
TB Stigma in the UK: Patients Experiences and Everyday Responses
An observational study of TB and Tuberculosis, run by Bournemouth University at 1 site in United Kingdom.
Trial 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. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- TB, Tuberculosis, Stigma
- How many people
- 20 participants
- Where
- 1 siteUnited Kingdom
- Study dates
- 1 Sep 2026to 1 Mar 2028
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
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.
Who may be able to join
- 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
Who cannot join
- 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
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
United Kingdom1 site
University Hospitals Dorset
Bournemouth, Dorset
David Thomas, MRes, BSc, RN, 0300 019 4570, david.thomas117@nhs.net
David Thomas, MRes, BSc, RN
About this study
Official title: Making Sense of Tuberculosis (TB) Related Stigma in a Low-incidence Area of the UK: Patients Experiences and Everyday Responses
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.
- Conditions
- TB, Tuberculosis, Stigma, TB Stigma, Low Incidence
- Keywords
- TB, Tuberculosis, Stigma, Low incidence, TB stigma
- Medical subject headings
- Tuberculosis, Social Stigma
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| 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. |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: From enrolment to completion of interviews is likely to be up to 3 months for individual participants. Recruitment runs for 10 months.
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted27 May 2026
- Study start1 Sep 2026 (estimated)
- Primary completion1 Mar 2028 (estimated)
- Study completion1 Mar 2028 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (14)Papers the sponsor has linked to this study.
- Other trials for TBStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case only
- Time perspective
- Retrospective
- Enrolment
- 20 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Bournemouth University
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07609264
- Sponsor's protocol ID
- 11172
- Acronym
- TB stigma
- Status last verified
- Feb 2026
- First submitted
- 14 Apr 2026
- Last updated
- 27 May 2026
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
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 33097021Bedingfield 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 35734012Braga 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 38746905Craig 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 2781052141. 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 35797082Goffman 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 39696110Ahmed 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 40201553European 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.
Study at a glance
From the registry record, last updated by the sponsor on 27 May 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Making Sense of Tuberculosis (TB) Related Stigma in a Low-incidence Area of the UK: Patients Experiences and Everyday Responses
- ClinicalTrials.gov ID
- NCT07609264
- Acronym / sponsor ID
- TB stigma / 11172
- Conditions
- TB, Tuberculosis, Stigma, TB Stigma, Low Incidence
- Keywords
- TB, Tuberculosis, Stigma, Low incidence, TB stigma
- Study type
- Observational
- Recruitment status
- Not yet recruiting
- Enrolment
- 20 participants (estimated)
- Lead sponsor
- Bournemouth UniversityUniversity, hospital or other
- Study start
- 1 Sep 2026 (estimated)
- Primary completion
- 1 Mar 2028 (estimated)
- Study completion
- 1 Mar 2028 (estimated)
- First posted
- 27 May 2026 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
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.
Study design
- Observational model
- Case only
- Time perspective
- Retrospective
- Number of arms
- 1
| Arm | Type | Receives |
|---|---|---|
| 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. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- 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.
Key inclusion criteria (3 listed)
- 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
Key exclusion criteria (3 listed)
- 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
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
TB stigma in the UK: Patients experiences and everyday responses
Time frame: From enrolment to completion of interviews is likely to be up to 3 months for individual participants. Recruitment runs for 10 months.
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.
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 27 May 2026.
- Background: PubMed 33097021Spruijt 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.
- Background: PubMed 35734012Bedingfield 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.
- Background: PubMed 38746905Braga 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.
- Background: PubMed 27810521Craig 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.
- Background41. Charmaz K. Constructing grounded theory. 2nd ed. London: Sage; 2014
- Background: PubMed 35797082Thomas 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.
- BackgroundGoffman E. Stigma: notes on the management of spoiled identity. New York: Simon & Schuster; 1963
- BackgroundWorld Health Organization. The End TB Strategy. Geneva: WHO; 2014. Available from: https://www.who.int/publications/i/item/WHO-HTM-TB-2015.19
- BackgroundStop TB Partnership. The global plan to end TB 2023-2030. Geneva: Stop TB Partnership; 2022
- Background: PubMed 39696110Seyedmehdi 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.
- Background: PubMed 40201553Ahmed 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.
- BackgroundEuropean 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
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of TB and Tuberculosis, run by Bournemouth University at 1 site in United Kingdom.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 3 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: opening soon, as of the sponsor's last update on 27 May 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact David Thomas, MRes, BSc, RN (0300 019 4570, david.thomas117@nhs.net), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
TB stigma in the UK: Patients experiences and everyday responses (time frame: From enrolment to completion of interviews is likely to be up to 3 months for individual participants. Recruitment runs for 10 months.). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT07609264, which also lists 14 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 27 May 2026.