Mapping Financial Support for the Terminally Ill

Launched by UNIVERSITY COLLEGE, LONDON · Jan 20, 2025

Keywords

ClinConnect Summary

This clinical trial is focused on understanding the financial support available for people who are living with a terminal illness—an illness that cannot be cured and is expected to lead to death. Many individuals in this situation and their families face increased costs, like medical care, travel to appointments, and daily living aids, while also dealing with the loss of income as caregivers often reduce their work hours or stop working altogether. The goal of the study is to map out what financial assistance options are available and to learn about the experiences of those who apply for this support. By doing this, researchers hope to identify barriers that make it hard for families to access help and to improve the application process for financial support.

To participate in this trial, there are three main groups: the first group includes patients with terminal illnesses and their families who have received financial support; the second group consists of healthcare professionals who help connect patients to these resources; and the third group involves staff from financial support services. Eligible participants need to be over 18 years old and able to understand spoken English or Welsh. Those who have lost a loved one recently (within the past three months) will not be included to help avoid emotional distress during interviews. Participants can expect to share their experiences and insights in interviews aimed at helping improve financial support for families facing terminal illnesses.

Gender

ALL

Eligibility criteria

• There are three participants groups for this research. For each group, there will be separate eligibility criteria. These groups are:
• • 1. Patient group: people with terminal illness (and/or their families/bereaved families) who have received financial support.
• • 2. Referral group: healthcare professionals who refer individuals for financial support (i.e., social workers, clinicians),
• • 3. Services group: people who work for a financial support service.
• Patient group:
• • 1. Have a diagnosis of terminal illness by their healthcare provider, defined as someone with an advanced incurable illness (in case of bereaved families, having caring responsibility for someone with a terminal illness).
• • 2. Be over 18 years of age.
• • 3. Have capacity to participate. As people with terminal illness may also have comorbid conditions potentially affecting cognition (e.g. cancer and dementia), we will monitor capacity during their involvement in the qualitative interviews.
• • 4. Understand spoken English or Welsh to participate in an interview.
• • 5. Only bereaved families who had their loved one who had died in the previous 4 to 10 months will be recruited. This is to reduce the risk of experiencing any emotional distress linked to the topic discussed during the qualitative interviews. This timeline has found to be the optimal time for such work, whereby the carer feels ready to think about their loss but still has sufficient recall of events.
• Referral group:
• • 1. They are a registered healthcare professional who have discussed financial support with people living with terminal illness.
• Service group:
• • 1. They work for a group (either a charity or local authority) who provide financial support for the public.
• Exclusion Criteria:
• • If any of the inclusion criteria are not met, the individual will be excluded. Participants with no capacity or if the researcher has concerns about their capacity to consent, will not be able to take part in the study. Bereaved families who had lost their loved ones very recently (within the previous 3 months) will be excluded.