What next?
What next?
About this study
People with a diagnosis of pulmonary fibrosis (PF) have complex needs and can experience high levels of distress due to the disease. This online nurse-led intervention aims to try out a robust mindfulness programme that also teaches and encourages self-compassion and resilience amongst people living with PF. Through enhanced psychosocial support which helps to meet mental, emotional, social, and spiritual needs, the programme aims to enhance the quality of life of people with chronic respiratory disease.
The main aim of the study is to see whether this type of support can work when it's given online over a period of four weeks.
The researchers also want to:
1. Explore the interest in the programme and how easy it is for recruitment, as well as how many people complete the programme.
2. Outcomes to assess whether people taking part find the interventions and trial design acceptable.
3. Gather feedback from people taking part about their experience and views of the programme.
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 are interested in participating in the CMR programme and associated study, you will be asked to register your interest online. You can do this via the online form.
This information will be shared with the researcher who will then contact you.
You will be asked to take part in one session per week for four weeks via Zoom.
Each weekly session will last 2 hours and will be a group setting with a maximum of eight other people taking part.
The researchers also ask that you practice mindful techniques for 10 minutes a day, 5 days per week and encourage you to maintain a diary to record your home practice.
Summary of involvement
1 online session per week for 4 weeks
Each session lasts 2 hours
Mindfulness tasks for 10 minutes per day, 5 days per week for the duration of the programme
Can I take part?
You may be able to take part if you have a diagnosis of pulmonary fibrosis, are aged 18 years and over, and have access to the internet.
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 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.
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.
Diagnosis of pulmonary fibrosis
Over 18 years old
Live in the UK
Willing to participate and attend 1 x 2 hour class per week for 4 weeks
Have access to a device such as tablet, computer, laptop or phone with internet access
You do not have a diagnosis of pulmonary fibrosis
Adults who are experiencing severe periods of anxiety, depression, mental illness, recent bereavement or addiction
What difference could taking part make?
The number of cases of PF is increasing worldwide. Living with this condition can lead to a reduced quality of life for both individuals and their caregivers. Anxiety and depression are more common among those living with PF than in the general population. It is important that effective care is in place to improve the psychological health of this group. ‘Mindfulness’ as an intervention has increased in popularity of the years, however recruitment and retention to such programmes is problematic due to the ill health of individuals or the demands of caring duties. Shortened programmes have excellent potential; however, they require analysing and individual assessment. This study aims understand more about an online for those living with PF, which could help to inform future research.
Where does the study take place?
Study locations
This is a remote study and you can take part if you live within the UK and the Republic of Ireland
How to take part
You can register your interest to take part via this link https://forms.office.com/e/ctS60C5Vfa or you can email the study researcher for more information at julie.mcmullan@qub.ac.uk
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.
julie.mcmullan@qub.ac.ukThis study is supported by
APF does not endorse or recommend any specific study. All responsibility for the study remains with the sponsors and investigators.
Every effort is made to keep these details up to date. If you are aware of any inaccuracies, please email research@actionpf.org