Not yet recruitingOBSERVATIONAL

Mapping Financial Support for the Terminally Ill

This study aims to understand the financial support available to people with a terminal illness and their families in England and Wales. Living with a serious illness often means being unable to work and facing higher costs for care, equipment, and travel. This can lead to financial worry. This research investigates what charities and local councils offer, how easy or difficult it is for people to access this help, and why. By speaking with patients, their families, and those who provide or refer to financial aid, the study hopes to identify ways to improve the process, make support more accessible, and help prevent people from struggling financially during such a challenging time.

At a glance

Status

Not yet recruiting

Sponsor

University College, London

Enrolment target

Start

01 Mar 2025

Estimated completion

01 Dec 2025

People with Terminal Illness

What is this study about?

When someone is living with a terminal illness, which is an illness that cannot be cured and is expected to lead to death, life can become very challenging. Often, they might not be able to work, and at the same time, they face extra costs. These can include paying for care, buying special equipment like grab rails to help at home, or covering travel expenses for hospital appointments. Family members might also need to reduce their work hours or stop working entirely to provide care. All these factors can make it very hard to manage money and can lead to financial worries.

This study, called 'Mapping Financial Support for the Terminally Ill', wants to understand this situation better. It's looking at what financial support is currently available through charities and local councils in England and Wales for people with a terminal illness and their families. The research also aims to find out why it can be difficult for people to access this support, both for those who need it and for the healthcare professionals trying to help them.

The overall goal is to identify who is most at risk of financial hardship, streamline the application process for financial aid, and provide valuable information to help create better policies in the future. Ultimately, this research hopes to ensure that people facing a terminal illness can focus on their health and spending time with loved ones, rather than worrying about money.

Key takeaways

This study explores financial support for people with a terminal illness.
It covers England and Wales, looking at charities and local government aid.
Researchers will interview patients, families, referrers, and service providers.
The goal is to map available support and identify barriers to access.
Findings aim to inform policies and streamline the application process.
Participation involves a single, confidential interview.

Who may be eligible?

There are three main groups of people this study is looking to speak with.

The first group includes people living with a terminal illness, or family members who cared for someone with a terminal illness and have been bereaved within the last 4 to 10 months. You need to be over 18 years old, be able to understand English or Welsh well enough for an interview, and able to give your consent to take part.

The second group is for healthcare professionals, like social workers or doctors, who have talked to people with a terminal illness about financial support. The third group is for people who work for charities or local councils that provide financial help to the public. If you don't fit into one of these groups, or if there are concerns about your ability to understand and agree to take part, unfortunately, you wouldn't be able to join the study.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

I have been diagnosed with a terminal illness, or cared for someone with a terminal illness who passed away 4-10 months ago.
I am over 18 years old.
I can understand and speak English or Welsh well enough for an interview.
I can give my agreement to take part in the study.
I am a healthcare professional who discusses financial support with patients with terminal illness, OR
I work for a charity or local council that provides financial help to the public.

Answer every question to see your result.

What does participation involve?

If you are invited to take part in this study, your involvement would be through an interview. This interview is designed to understand your experiences and perceptions of financial support. You would only need to participate in this interview, and there are no other appointments, assessments, or medications involved. The study team will make sure you are comfortable and can withdraw at any time. The interview would be a one-off discussion, and there would be no long-term follow-up required from you.

Potential risks and benefits

Participating in this study offers the benefit of sharing your experiences, which could directly help improve financial support for others facing similar challenges in the future. While discussing personal financial situations and illness can sometimes be emotionally sensitive, the researchers are very aware of this and will conduct interviews with care and sensitivity. You have the right to stop the interview at any time, or to withdraw from the study completely, without giving a reason, and this will not affect your care or relationship with any services. The aim is to make your participation as comfortable and beneficial as possible, knowing your contribution is helping to make a real difference.

Locations (2)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

Cardiff University
Verified postcode
Cardiff, United Kingdom
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London
Verified postcode
London, United Kingdom

Common questions

What does 'terminal illness' mean in this study?

It refers to an illness that cannot be cured and is expected to lead to death, as diagnosed by a healthcare professional.

Will my personal details be kept private?

Yes, any information you share during the interview will be kept confidential and your identity will not be shared in any reports or findings.

Do I have to live in England or Wales to take part?

Yes, the study is specifically looking at financial support services available in England and Wales.

What if I experience distress during the interview?

The researchers are trained to handle sensitive topics with care. You can take breaks, stop the interview, or withdraw at any point if you feel uncomfortable. Support resources can also be offered.

Will I be paid for taking part?

The information provided does not mention any payment for participation. The main benefit is contributing to research that aims to improve support for others.

How to find out more

Nicola White, PhD

n.g.white@ucl.ac.uk +44 (0) 2076799057 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.