What next?
What next?
About this study
This study is exploring informal caregiving in respiratory disease, such as pulmonary fibrosis at the end of life. It is known that people with non-cancerous disease face inequalities in relation to the palliative care and end of life care that they receive. This can also have a huge impact on caregivers, who play a crucial role in the health and care system in the UK.
This study will collect information from bereaved caregivers to deepen the understanding of their experiences and what supported or hindered their caring role. This study is embedded within a wider PhD programme of work which seeks to answer the question: ‘What are the experiences of caregivers in caring for people with non-malignant respiratory disease at the end of life and how can caregivers best be supported?’ The research question for this study is ‘What are the roles and experiences of informal caregivers in non-malignant respiratory disease at the end of life and what barriers and enablers exist for this group?’
The aim of this study is to explore the experiences and roles of informal caregivers for people with Non-Malignant Respiratory Disease at the end of life, and to understand more about what helps and hinders this.
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 eligible to take part, you will be sent a Participant Information Sheet and consent form to read through.
If you are happy to proceed, an online interview will be arranged via Microsoft Teams (or a phone call can be arranged if preferable).
The interview will last approximately 1 hour, during which time, you will be asked to talk about your experiences of caregiving during the last year of your family member’s or friend’s life.
At any point during the interview, you will be able to stop and withdraw, without giving a reason.
Summary of involvement
1 hour interview which takes place over Microsoft Teams or the telephone.
Can I take part?
You may be able to take part if you are a bereaved caregiver who has supported someone with a respiratory disease at the end of life.
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 must be aged 18 years or over.
You have provided care / support to a family member or friend aged 18 or over during the last year of their life.
Your family member or friend must have had a diagnosis of a non-malignant respiratory disease, which can include any form of pulmonary fibrosis.
You have a cognitive impairment which limits your capacity to give informed consent to take part.
You have insufficient English language skills to be able to take part in the interview.
The person you cared for was under 18 years of age.
What difference could taking part make?
This study is part of a PhD programme aiming to deepen understanding of caregiving in this context to develop recommendations how best to support and sustain the caregiver role.
Where does the study take place?
Study locations
England
How to take part
For more information contact kathy.rogers@uwe.ac.uk / 0117 328 7335.
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.
Kathy.rogers@uwe.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