Blackburn and Darwen TB Project with South Asian communities
From September 2014 to March 2015, a TB awareness project was conducted within Blackburn and Darwen’s South Asian communities to help services, commissioners and communities to better understand levels of awareness of Tuberculosis (TB) in these communities.
Blackburn & Darwen Borough Council commissioned Our Life community engagement specialists to develop a group of six community members to conduct interviews within their own communities, with the support of One Voice Network.
Our Life are a social enterprise, working across the North West since 2009 to develop resident-led engagement in health and wellbeing issues, and have been leading the field through developing an innovatory community research approach , “community explorers”. This approach harnesses residents’ unique abilities to relate to each other in an informal exchange about issues which matter deeply to them, and has been demonstrated to move beyond the gathering of information to become a catalyst for residents to take action on the issues.
In October 2014 , the community ‘explorers’ were trained in TB awareness and community engagement approaches by Our Life.
The ‘explorers’ worked in their communities throughout November and January to gather South Asian residents’ views on:
- How TB is caught and transmitted
- Who is at risk from TB
- How TB can be prevented
- How TB is currently treated
- What myths there are regarding TB
- What stigma exists around TB
- What assets in the community can help prevent TB
The ‘explorers’ conducted a series of interviews asking the following questions:
1.What do you know about TB? Eg Symptoms? Cure? How it can be caught? What to do? Who gets it? Where is it from?]
2. How did you learn what you know about TB? Eg experience, newspaper story, study,etc
3. How do you think someone with TB would be viewed by the community?
4. What might help improve the situation?
4a. What could Health services do better?
4b. What could communities do themselves?
5. Any comments?
Over 300 questionnaires were completed by the explorers from a cross section of the South Asian community in Blackburn.
In February 2015, the results were gathered into a Report for a Feedback Event in March, involving communities and key agencies. The findings will be used to help plan future preventative work and campaigns within the communities.
Generally, the research endorses the approach to community empowerment outlined by AMPH:
Empower people with TB and communities through partnership.
Pursue advocacy, communication, and social mobilization.
Foster community participation in TB care.
Sound information about TB symptoms and curability is the key to creating an aware and positive community. The knowledge that TB is curable helps to breed the desire and the will to support others with TB. Personal experience breeds empathy.
Ignorance or myths from overheard stories breeds fear, and this misinformation needs to be rectified to reduce stigma, anxiety and hostility.
Face-to-face word of mouth from a trusted source is the primary form of communication. It is powerful in creating and dispelling myths. Professional and communities could consider how to use community-based events to convey easy-to-understand information about TB and develop more open discussion in the communities to reduce stigma. People who knew TB is curable were much more relaxed about TB and more supportive of TB patients and their families.
Education as key – once facts grasped, it breaks down fear and may increase take-up of services and encourage the development of the communities’ own support-systems. Education via schools and colleges (Biology) and within community events.
TB is complex and easy to confuse with flu etc. The symptoms need to be broadly shared
There are lots of myths which hinder people acting positively on TB. Tales from the past and fatalistic experiences from people with direct experience of (or overheard stories about) health poverty in Asian countries.
Awareness-raising can help and needs to be focussed on simple key messages (symptoms, curable with six months of antibiotics taken every day, go to GP asap, not virulently contagious, antibiotic stops spread within 2 weeks, sympathetic treatment, emotional support, etc)
Assets in the community can help prevent TB
Positive Mindset – sympathy
Info-sharing at community events (One Voice)
Diet, exercise groups
Self-help support groups
Neighbourliness – help sufferers take meds, identify symptoms, urge GP attendance/regular check ups
Community Leaders speak out
Supporting the Explorers as community champions
Work within community events as collaborators: work alongside positive people to discuss community responses. Start from sound information from professionals, and open discussion (including messages about TB being non- contagious after 2 weeks of treatment; essential to complete the anti-biotic course; go to GP asap if have TB symptoms and encourage others to do same)
Work within schools and colleges – young people play a vital role in sharing sound information within their communities.
For more information, please contact: Nick Beddow (Our Life) on 07818 568263