Sickle cell and thalassaemia screening: overview of community outreach
Outlines the community outreach work delivered by the screening programme since 2005, and how it was researched, planned, implemented and evaluated.
This case study accompanies the guidance on community outreach produced by the NHS Sickle Cell and Thalassaemia Screening Programme.
Together this resource is for people commissioning, funding, delivering and evaluating outreach work in both the NHS and the voluntary sector.
The case study:
- explains why community outreach was important
- outlines the outreach work delivered by the screening programme since 2005
- how we researched, planned, implemented and evaluated the work
Video: an innovative community outreach programme
This short video:
- explains why the NHS did outreach
- describes the main activities (creating a drama on DVD shown with facilitated question and answer sessions, community education and discussion sessions, media work and attendance at a wide variety of community events and settings)
- presents evaluation data
- contains testimonies from voluntary sector partners, people living with the condition, carers and members of the public
Watch a short film giving an overview of our outreach work
Sickle cell and thalassaemia
Sickle cell disease and thalassaemia are part of a wider family of conditions that affect haemoglobin, the substance within the blood that carries oxygen around the body. Sickle cell disease affects the quality of red blood cells. Thalassaemia affects the number of red blood cells.
Sickle cell anaemia: NHS Choices
What is sickle cell anaemia?: Sickle Cell Society
About thalassaemia: UK Thalassaemia Society
Community outreach: why we did it
Improve public knowledge about genetic screening.
Established in 2002, sickle cell and thalassaemia was the first national genetic screening programme in the NHS.
People typically think about screening in terms of detecting a health condition: for example, cancer screening finding a lump. Genetic screening can detect if you are a genetic carrier.
We needed to explain to the public:
- what a genetic carrier is
- what information genetic screening provides
- what the implications are for the people screened
- what choices they can make when planning or have a family
Counter widespread ignorance and stigma about conditions
This ignorance existed amongst the public and also amongst health professionals. People cannot make informed decisions about screening if they have never heard of the condition you are screening for. We knew that stigma was a barrier to accessing both screening and care.
Improve care for some black and ethnic minority populations
The conditions are more common in people from some black and ethnic minority populations. A genetic screening programme that could involve termination of pregnancy was a sensitive issue and the reasons for introducing it could have been misunderstood.
It was important that at risk communities understood that the aim of screening was to empower them with information to make their own choices and to ensure that life-saving care could be provided promptly.
Also, some people from the target communities were less likely to access health information through usual NHS channels either because they did not visit them or because of other barriers such as language or culture or mistrust of the NHS.
Community outreach: what we did
The outreach projects were to promote understanding of sickle cell and thalassaemia and the screening offer so people could make informed choices about screening.
Outreach research and preparation
We wanted to reach out to populations at higher risk: African, Caribbean, Asian in particular. We conducted research amongst target populations about knowledge and attitudes. Our main findings were:
- communities had low levels of knowledge, especially about thalassaemia
- stigma and misunderstanding existed
- people were open to education and wanted to know more
We conducted desk research to identify good practice in outreach.
We then conducted research amongst agencies working with target populations and methodologies. We chose to work with 3 agencies which had strong links with target populations, and had established methodologies:
- Social Action for Health (Asian audiences, Tower Hamlets)
- WomanBeing Concern (African and Caribbean audiences, South London)
- Black Health Agency (Asian audiences, Manchester)
This preliminary research was extremely important for the credibility of our project. We set up a national steering group to provide advice, expertise and governance of our work.
A Planning Framework based on Preliminary Community Consultation: May 2002
Sickle cell and thalassaemia qualitative research report: Populus, June 2004
Outreach scoping project: Ethnos consultancy, 2007
Our interventions: thalassaemia and peer education
Tower Hamlets and Manchester: peer education projects
We trained local health workers from the relevant communities to deliver an intervention, sometimes in the local language, including Bengali or Urdu.
All projects started with social marketing research into starting point of target audience in terms of knowledge, attitudes, cultural factors, and potential barriers to understanding and accessing screening. We developed a very close partnership working with the voluntary sector to inform the presentation and materials.
The intervention was initially a scripted presentation followed by questions and answers plus evaluation. Later we developed supporting film material.
An iterative approach with extensive consultation was used to develop the supporting literature. We published translations into Urdu, Bengali and French.
We established local steering groups including service users and representatives from local care services so that there was a link between education and services.
Sickle cell outreach: innovative approach using drama
In South London, we worked with WomanBeing Concern and the Sickle Cell Society to develop a drama (The Family Legacy) on DVD about a family’s experience of sickle cell disease and screening showing the impact on different generations.
The Family Legacy: part 1
The Family Legacy: part 2
The Family Legacy: part 3
Our workshops with local people, service users and carers helped to develop the storyline for the drama so that it was based on real experience and addressed identified information needs.
We commissioned the Sickle Cell Society to disseminate the drama DVD. Together with the Society, we organised viewings of the drama, followed by questions and answers sessions plus participant evaluation. DVD and discussion ran in a variety of settings including community events, film festivals, and barber shops, individual homes, restaurants . We trained and supported facilitators to prepare them for question and answer sessions.
We also ran the DVD in greater London and around the country, particularly in Manchester.
We developed extensive supporting media work using a short clip of the drama.
See Men, hair and sickle cell barbers join health awareness campaign: Calabash magazine Issue 8 p 59.
The Sickle Cell Society led our work to promote the DVD and education sessions at major community events. We worked closely with the voluntary sector throughout this promotional process.
The poster ‘The Family Legacy: An Innovative Approach to Raising Awareness of Sickle Cell Disease and Testing’ prepared for a conference outlines this work.
The toolkit Running outreach sessions on sickle cell and thalassaemia developed by Iyamide Thomas, Elaine Miller of the Sickle Cell Society, prepared volunteers for discussion sessions.
See Sickle cell and thalassaemia: a brief introduction, a presentation for discussing sickle cell and thalassaemia.
Outreach support and monitoring
National and local steering groups provided independent monitoring and scrutiny of the outreach programme.
National steering group
The national steering group ensured there was good governance of the project as a whole, and that public money was being used appropriately.
It also advised us on good practice as exists in both outreach generally and the sickle cell and thalassaemia field in particular.
This group was chaired by a specialist in issues affecting black and minority ethnic groups and specifically in sickle cell and thalassaemia.
Membership of the group included:
- service users and carers
- voluntary sector representatives
- specialists in genetics
- specialist counsellors in the field of sickle cell and thalassaemia
- people with experience of community outreach
Local steering groups (Tower Hamlets, Manchester)
Local steering groups helped ensure that our addressed local needs and those local services were aware of it. We wanted to ensure that if patients came to services as a result of attending a session, the services were prepared.
Education and engagement of primary care remain key issues for us and in many outreach projects.
In Tower Hamlets, our group included:
- service users and carers
- specialist counsellors working in sickle cell and thalassaemia
- the lead clinician in the local hospital
Evaluating our work
We evaluated the outreach programme while in progress, so we could make changes as we went along.
At each event, we provided feedback forms which were given to all attendees. The session organiser collated the results and delivered them to the screening programme for analysis. This feedback helped us adapt our interventions.
This particularly applied to the supporting literature and resources, which became simpler as we progressed. It also informed us about issues such as:
- the extent to which we provided translations, or native language speakers to run sessions
- the content of the scripted presentation
- the kind of person who should deliver interventions
An independent evaluation of the whole project took place after 2 and again after 3 years running.
In the first stage, Barbara Burford Associates (BBA) reviewed all the evaluation forms we had received, visited all projects and talked to people who delivered the work and those who had attended sessions. On the basis of their first report, we changed some aspects of how we delivered the project.
The most important change was that we moved from commissioning local health promotion agencies to commissioning the voluntary sector.
The research showed that the local agencies sometimes struggled with the complexity of the clinical information and had no particular commitment to our issues beyond getting paid for the project. The voluntary sector was able to field session leaders with appropriate clinical knowledge and did have an ongoing commitment to our aims.
Having changed our delivery partners, BBA then returned to conduct a second phase of the evaluation.