Analysing Experiences of Tuberculosis Care
Research type
Research Study
Full title
Semi-structured interviews and focus groups to explore the experiences, views, and concerns of both migrant patients and health-service providers around receiving or delivering treatment and care for latent tuberculosis infection (LTBI) and active tuberculosis (TB) at NHS services.
IRAS ID
260105
Contact name
Laura Nellums
Contact email
Sponsor organisation
St George's University of London
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Summary of Research
The United Kingdom, despite being considered a low tuberculosis incidence country has one of the highest incidence rates of Tuberculosis in Western Europe. Of the thousands of people that develop active TB every year, around three-quarters are migrants (foreign-born individuals); migrants have a TB rate which is 13 times higher than that seen in the uk-born population. Migrant individuals are also the most likely to be screened and treated for LTBI (Latent tuberculosis infection) - an approach which is considered an essential component of TB control. Tackling TB in these populations in particular is therefore a key factor in reaching elimination of TB within the UK.
However, treatment outcomes among these individuals are not currently sufficient to reach TB elimination goals. Migrants appear to suffer worse outcomes overall, for example, poor adherence to treatment and longer delays in receiving treatment These outcomes may be compounded and driven by wider social and cultural difficulties they face which are common to all demographics (deprivation), but also some which may be specific to migrant populations in particular (for example difficulty accessing care and language barriers).
To better support migrant individuals receiving LTBI and TB treatment, and ultimately eliminate TB in the UK, we must be able to understand how they're experiencing such care. What are the challenges? what makes treatment easier? and how can we improve things? As of yet few studies have sought to ask these questions in a holistic and in-depth manner. Understanding where challenges lie, what things currently go well, and what can be improved will give us a powerful foundation to deliver change and improve care for these individuals.Summary of Results
This study used one-to-one interviews to explore the experiences and treatment outcomes of migrants with TB (Tuberculosis) being treated within the NHS.
We interviewed 28 people between December 2019 and December 2020. 16 of these people were healthcare workers (Consultants, Nurses), and 12 were migrant patients being treated for TB.
We interviewed patients to gain a first-hand account of the things they found difficult, or helpful, during their treatment. We interviewed healthcare workers to understand these same things from a broader perspective, tapping into their combined knowledge and experience of treating many patients.When we combined the results of all 28 interviews, and looked for common factors and themes, we identified 10 clear areas that could positively and/or negatively influence treatment experiences and outcomes.
These factors were: 1. Whether there was a holistic approach to care; 2. The existence and use of networks between healthcare workers and third-sector organisations and charities; 3. The quality of patient-provider relationships; 4. The unique circumstances of each migrant patient; 5. The extent of the access and entitlement to treatment experienced by migrant patients; 6. Day-to-day living the ability to incorporate treatment into a patient's life; 7. Language and communication barriers; 8. The culture, background and previous experiences of patients; 9. The different ways in which TB is understood by patients; 10. The existence of stigma toward and regarding TB.We found evidence of complex interacting patterns between these factors. One example being that where language & communication is an issue (factor 7 above), if for example the medical terms used are too complex, this can have a negative impact on the understanding of TB the patient has (factor 9 above).
What we did identify, is that positive experiences of treament, and the foreseen positive impact on treatment outcomes is strongly driven by the holistic approach to care healthcare workers take. In particular, positive patient-provider relationships are crucial, and can help to overcome barriers and difficulties in many areas of treatment.
REC name
East of England - Cambridge South Research Ethics Committee
REC reference
19/EE/0204
Date of REC Opinion
26 Jul 2019
REC opinion
Further Information Favourable Opinion