Tackling the Repercussions of UK-based Stigma towards Tuberculosis (TRUST): a participatory study to co-design a stigma reduction intervention

Background Despite being preventable and curable, tuberculosis (TB) rates in the UK remain unacceptably high, falling short of national and international targets.

TB is a major threat to health equity, disproportionately affecting the most socially vulnerable, including people that have experienced alcohol or drug misuse, homelessness and imprisonment, and those born outside the UK. TB stigma is pervasive and a known barrier to healthcare delivery, yet TB stigma reduction interventions are lacking.

Limited evidence from high TB burden settings such as South Africa points to the benefits and feasibility of co-producing interventions with affected communities.

Aims and Objectives Aim: To co-design a TB stigma reduction intervention to improve patient wellbeing and treatment completion in TB patients within the NHS.

Objectives: To characterise experiences of TB stigma in the UK through in-depth qualitative interviews with patients, their friends and family, and healthcare workers (HCWs).

To co-design a TB stigma intervention with key stakeholders (patients/friends/family/HCWs) through participatory workshops using the principles of human-centred design.

Methods This 18-month project will consist of two workpackages (WPs) using participatory research methods: in-depth qualitative interviews and intervention co-design, with WP1 informing WP2.

Drawing on principles of Evidence-Based Co-Design and human-centred design, experiences of stigma identified in WP1 will feed into the solution-oriented co-design process in WP2. WP1: Qualitative interviews.

We will conduct in-depth qualitative interviews with 25-30 participants (TB patients, friends/family, and HCWs), purposively recruited from St George s University Hospital NHS Foundation Trust (SGH) TB service, to understand personal or professional lived experience of TB stigma. Data will be synthesised using a framework analysis.

WP2: Intervention co-design.

We will co-design a targeted TB stigma reduction intervention for the NHS through an iterative process of engaging TB patients, their friends/family, and HCWs, recruited through SGH TB service, in 3-4 participatory workshops.

Discussions will generate an intervention prototype, which may include elements such as counselling, peer support, education, and HCW training.

Outcomes, Anticipated Impact and Dissemination This project will provide the first data on how experiences of TB stigma in the UK impact care delivery and outcomes – and will co-design a stigma reduction intervention tailored to the NHS context with service-users and providers.

We will disseminate findings at all levels, to target participants (celebratory event, study report in multiple languages), communities (social media), NHS clinical staff (London TB service meetings, National TB Nurses Network), academics (publications, conference presentations), and policy-makers (guide/manual for NHS decision-makers/commissioners, lobbying politicians via advocacy groups).

The co-design process will ensure that the proposed intervention is acceptable and feasible to relevant stakeholders and within the NHS context.

This facilitates rapid progression to formal evaluation of the intervention via clinical trial, which we plan to conduct prior to rollout across the NHS.

Interventions to reduce TB stigma are urgently needed to implement equitable patient-centred care that meets the needs of underserved communities.

This has short- and long-term benefits for individuals (reduced stigma, improved wellbeing, better treatment outcomes), families/communities (reduced caring responsibilities, less transmission) and the NHS (lower cost of fewer cases and less complex treatment).