"I was delighted to take part in a clinical trial as it has the potential to really help others in the future.”
A study of the experiences of family members caring for someone at home who is near the end of life
Please note - this trial is no longer recruiting patients. We hope to add results when they are available.
This study is asking family carers about their experience of the support from palliative care services during the last year of life of those they cared for. Examples of these services are healthcare teams, charities and other organisations.
More about this trial
Family carers need support to maintain their physical, emotional and mental wellbeing while caring for a family member near the end of their life. Researchers would like to know about what support is available for family carers.
The aims of this study are to find out:
- family carers’ views about the support they received during the last year of life of the family member they cared for
- about situations or areas where the family carer needed more or less support
- about factors that helped or delayed the support for the family carer
Who can enter
The following bullet points list the entry conditions for this study. Talk to your doctor or the study team if you are unsure about any of these. They will be able to advise you.
Who can take part
You may be able to join this study if all of the following apply. You:
- are or were the main unpaid carer of a family member with cancer
- have or had support from healthcare organisations, charities or volunteer organisations such as Marie Curie or Macmillian nurses
- can speak English
- are at least 18 years old
Who can’t take part
You cannot join this study if your healthcare team think it might add to your distress. For example, if talking about your experiences remind you of events that would be upsetting as it relates to the deteriorating moments of the person you cared for.
The study team need 50 people to take part.
You can find out about the study either through the organisation supporting you and your family member. Or through a support group for carers.
You get an invitation package. This includes:
- a letter of invitation
- an information sheet about the study
The research team will interview you either online or over the phone. This is at a time and place that is convenient for you. It takes about 30 minutes to an hour.
The questions they ask you are about your experiences of supporting your family member while they were receiving palliative care at home.
With your permission the researcher will record the interview. In the case of a video phone link you can turn off your video if you want to.
There are no hospital visits.
You might get upset when talking about your experiences of looking after your family member.
The person interviewing you will be aware of this and can tell you about organisations or people you can contact if you want to.
How to join a clinical trial
Please note: In order to join a trial you will need to discuss it with your doctor, unless otherwise specified.
University of Nottingham