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NCT06793631

Mapping Financial Support for the Terminally Ill

Sponsor: University College, London

View on ClinicalTrials.gov

Summary

People living with terminal illness (an illness that is not curable and likely to lead to death) are often unable to work and experience increased costs associated with their health, such as caring costs, needing to purchase aids for daily living (e.g., grab rails) and more travel for appointments. Family members frequently reduce the number of hours they work, or stop working all together, to care for their loved one. These factors exacerbate their risk of financial insecurity. Health and social care professionals are frequently required to complete applications on behalf of patients and their families for these grants or schemes. It is difficult and time-consuming to identify suitable sources of financial support for families living with a terminal illness. There is little known about the families who are applying for this support, how often they need to use these services and why. Mapping these resources and understanding the experiences of those applying for this support will help to identify groups who are at risk of financial insecurity, speed up the application process, and provide understanding to inform future policies to reduce the risk of dying in poverty. In the first phase of this study, the investigators conducted a mapping exercise, across England and Wales, to identify what voluntary and local government sources of support are available for people who are living with a terminal illness to apply for. In the second phase, the investigators want to identify potential barriers and facilitators to accessing this support through qualitative interviews with people who can refer to these sources of funding (e.g., social workers), the services (e.g., grant managers), and people who are living with a terminal illness and have applied for financial support. Overall, this research will scope what financial support services are currently available that people living with terminal illness, and their families, are eligible to apply for across England and Wales, and importantly, what the key barriers and facilitators are to accessing these services.

Official title: Mapping Voluntary Sector and Local Government Financial Support Services in England and Wales Available for People Living with a Terminal Illness: Understanding the Barriers and Facilitators to Access

Key Details

Gender

All

Age Range

18 Years - Any

Study Type

OBSERVATIONAL

Enrollment

Start Date

2025-03

Completion Date

2025-12

Last Updated

2025-01-30

Healthy Volunteers

Yes

Conditions

People with Terminal Illness

Interventions

OTHER

Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costs

There is no intervention for participants. Participants will receive qualitative interviews to explore their experience of financial insecurity

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.

Locations (2)

Cardiff University

Cardiff, United Kingdom

Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London

London, United Kingdom