TB Stigma in the UK: Patients Experiences and Everyday Responses

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.

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.

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

• 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

• 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