What next?
What next?
About this study
For many people, breathlessness can lead to feeling left out, isolated, or lonely. Through photography and personal interviews, we hope to better understand these experiences so we can help others facing similar challenges. By sharing your story, we aim to raise awareness among professionals and the public about what life with breathlessness is really like, and how support can be improved.
The aim of this study is to improve support available by understanding how breathlessness and loneliness are related to one another.
There are many different types of research. These studies might ask participants to test different treatments, devices, or complete questionnaires. Some studies may not require any involvement from people affected by PF, but instead look at cells in a lab environment, animal models, or utilise computer modelling.
A study involving people can be:
- Interventional – participants are given an active treatment decided by researchers. This could be a change in medication or lifestyle (e.g. exercise, diet, complementary wellbeing therapy, or symptom management). These are commonly known as clinical trials.
- Observational – participants are assessed for specific changes over time, but researchers do not alter their standard treatment or care (e.g. questionnaires to understand the impact of symptom, or patient registries that track trends in how disease affects people or the services that are provided).
There are 3 main phases of clinical trials:
- Phase 1 is the earliest stage of research, where there is often a focus on understanding if the treatment is safe or if it causes any side effects.
- Phase 2 still focuses on safety and side effects, but also tries to find out more about what is the best dose.
- Phase 3 often compares the new treatment to existing treatments or lookalike medications.
As drugs or interventions move into the different phases, the number of people taking part will increase. Not all studies will make it to the later phases, especially if the intervention is not found to be safe or effective in phase 1 and 2.
The recruitment aim is the number of people that researcher want to take part in the research study.
What is involved?
If you choose to take part in our study, there are 5 key steps:
- Introduction: meet with a researcher who will explain the study and answer your questions.
- Take photographs: over 2 weeks, you be asked to take photos that reflect your experiences of social connection and/or loneliness. No photography skills are needed. The research team are happy to offer tips!
- Choosing your photos: You'll pick your top 5 photos that best represent your experience.
- Interview: you'll have an audio-recorded conversation with a researcher, either in person or via video or telephone call. They will ask you about the photos you've taken and about your experiences of how breathlessness has affected your social connections.
Summary of involvement
Duration for up to 2 weeks
Taking photos that represent your experience of social connection and loneliness in relation to breathlessness
Interview with researcher
Can I take part?
You may be able to take part if you experience breathlessness and have or have had challenges with social connection or loneliness.
In research studies, there are lots of different reasons why you may or may not be able to take part. These are known as inclusion and exclusion criteria (see the main criteria list below). Only the research team will be able to fully determine whether you are able to take part in the study. You can withdraw at any point without this effecting your usual care or treatment.
If you are not able to take part in this research study, there may be other opportunities for you to take part in different studies.
To find out more about other research opportunities visit our research finder main page.
You live with long-term breathlessness caused by a physical health condition, including plumonary fibrosis
You've experienced challenges with social connection or loneliness, either now or in the past.
You're 50 years old or older.
You cannot take part in the study if you are unable to decide independently about your participation.
What difference could taking part make?
Your participation will help researchers to show others how living with breathlessness impacts your social relationships. Your involvement could help to improve the support available for others living with breathlessness.
Where does the study take place?
Study locations
The study takes place across England.
How to take part
If you would like to take part in this study, please email laura.m.cottrell@kcl.ac.uk or phone Laura at 020 7820 8205 or fill in this "Expression of Interest" form at https://forms.office.com/e/XJVP1cuEic
Further information
This page is a summary which provides information about an opportunity to participate in research. More detailed information about the study can be found via the following the links and through contacting the research team.
If you have any questions about this research study, please speak to your medical team.
laura.m.cottrell@kcl.ac.ukThis study is supported by
This page provides a lay summary of the research study and does not contain all the information needed to inform decisions about taking part. Please speak to your medical team or the study research team in relation to specific details about the study.
Action for Pulmonary Fibrosis does not endorse or recommend any specific study. All responsibility for the study remains with the sponsors and investigators. Every effort is made to ensure that these details are correct and are kept up to date. If you are aware of any inaccuracies, please email research@actionpf.org