Black History Month: Understanding diversity in our community
In 2019, for the first time, the UK CF Registry Annual Data Report included a section on ethnicity, which showed that over 8% of people with CF are from an ethnic minority background, with 24 people identifying as Black.
Cystic Fibrosis Trust is committed to being an inclusive organisation that recognises and celebrates diversity, which means ensuring the work we do is accessible and relevant to the diverse ethnic groups affected by cystic fibrosis, as well as tackling the misconception that CF is a condition that only affects White people.
A rich variety of experiences
Someone’s lived experience of CF can be affected by lots of different factors, such as ethnicity, religion, spoken languages, and cultural practices and beliefs. Genetics also plays a role; some CF mutations are more common in particular ethnic groups, which has implications for care and treatment options. In the wider non-CF population, the link between ethnicity and socio-economic status has been shown to impact health outcomes, opportunities and access to effective care and treatments.
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.
Understanding genetics together
We are pleased to be working with Breaking Down Barriers, a network of organisations working to address health inequalities and improve access to services for people affected by genetic disorders, such as CF.
Supported by Breaking Down Barriers, we are planning a study to better understand the experiences and needs of people with CF from ethnic minority backgrounds.
In collaboration with a diverse group of clinicians from across the UK, we’re recruiting CF centres to take part in the study, and plan to begin our study by speaking directly to people with CF and their families, to learn more about how CF impacts their lives and the individual challenges they face.
The aim of the study is 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, enabling us to effectively deliver information and support services, and identify gaps in the information we provide.
How we hope this study will benefit you
This study will help us develop our information and support services to ensure that it is relevant to, and representative of, the diverse CF population.
Our first step is to review and update 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 we feel there’s work to do to ensure it reflects the diversity of those living with CF.
We’ll 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 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 to address needs that aren’t yet being met.
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.
Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,600 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.