Understanding and responding to the needs of diverse ethnic communities
The Cystic Fibrosis Trust is committed to being an inclusive organization that recognises and celebrates diversity. This includes ensuring the work we do is accessible and relevant to the diverse ethnic groups affected by cystic fibrosis. It also means tackling the misconception that CF is a condition that only affects white people.
Through all aspects of our work, we must take opportunities to highlight and represent the diversity of the CF population. Cystic fibrosis affects a range of different ethnic groups. The UK CF Registry Annual Data Report 2019*, which contains data from 10,070 people with CF, reported for the first time that:
- almost 3% of those on the Registry are Asian (286 people)
- 24 are Black African or Black Caribbean (0.2%)
- over 1% identify as ‘Mixed’ ethnicity
- a further 3% identify as ‘Other’ or do not state their ethnicity.
Factors that can be related to ethnicity, such as religion, spoken languages, and cultural practices and beliefs, can all affect someone’s lived experience of cystic fibrosis. Genetics plays a role; some CF mutations are more common in particular ethnic groups, which has implications for care and treatment options. Ethnicity and socio-economic status have been shown to be linked in the non-CF population*, which can impact health outcomes and life opportunities. For these reasons, a ‘one size fits all’ approach to providing information and support does not work and we need to do more to meet the varying needs people have based on their own unique CF journeys.
In April, we published a factsheet on Ramadan and fasting in cystic fibrosis. We gained invaluable input from Muslims with CF, a Muslim hospital chaplain, and expert clinicians to produce this resource. The factsheet has received very positive feedback, and shows a demand for tailored information that addresses specific cultural and religious considerations that can impact CF. It also demonstrates the importance of involvement of end-users, and target audiences, in developing information. However, this is just one small step towards a more inclusive and representative approach to our information and support provision.
We are pleased to be working with Breaking Down Barriers, which helps patient organisations to develop supportive and inclusive services by people affected by genetic disorders. Supported by Breaking Down Barriers, we are carrying out a study to better understand the experiences and needs of people with CF from Black, Asian and Minority Ethnic (BAME) backgrounds. In collaboration with a diverse group of clinicians from across the UK, we are recruiting CF centres to take part in the study. Following ethical approval we will begin our study, speaking directly to people with CF and their families through participating centres (using remote methods) to learn more about how CF impacts their lives and any challenges they face.
The aims are to ensure we have an up-to-date understanding of the lived experiences of people affected by CF from a diverse range of ethnic backgrounds, as well as the ways we can deliver information and support services most effectively; and to identify any gaps in our existing information offer.
The study findings will help us develop our information and support to ensure that it is accessible to all, relevant to, and representative of, the diverse CF population. We will start by reviewing and updating our resources for parents of children newly diagnosed with cystic fibrosis.
This resource is often the first point of contact someone has with the Trust, but does not currently reflect the diversity of the CF population. We will then begin to review our entire suite of information resources, such as our nutrition factsheets, treatment information, and special packs on subjects such as fertility and family planning, to ensure they speak to the needs and experiences of different ethnic groups. As part of this, we will explore ways of ensuring some of our information is accessible to those for whom English may not be a first language.
The study will also help us identify other ways of offering support, such as online information sessions, digital activities for people to come together for peer support and socialising and any other specific activities which address unmet support needs.
Overall, we hope this work will broaden not only our own knowledge and understanding of ethnicity-related issues in CF, but also improve understanding both within and outside of the CF community. Only then can we achieve our goals of providing everyone with CF with a relevant and accessible information and support offering, and tackling misconceptions of CF by highlighting the diversity of the CF population.
*Health Equity in England: The Marmot Review 10 Years On | The Health Foundation
We’re keen to increase the representation of people living with CF from BAME groups in our Involvement group. There are many different ways in which you could help raise awareness of diversity in CF whilst shaping the Trust’s work, such as joining a focus group, providing input on information resources, or advising us on clinical trials. If you’d like to find more about involvement opportunities, please email [email protected] or watch the recent CF LIVE event.
If you’d be interested in sharing your story of living with cystic fibrosis as someone from a BAME background, please email [email protected].