Mapping Financial Support for the Terminally Ill

NCT06793631 | Not Yet Recruiting DMC

• 2 other identifiers: REC Reference: 24/WM/0209Marie Curie grant (MC-22-506)
• Study Type: observational
• Target: 40
• Locations: 1 country
• Sites: 2

Brief 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.

Conditions

People with Terminal Illness

Keywords

terminal illness; financial insecurity; mapping analysis; living costs

Outcome Measures

Primary Outcomes (1)

• Financial insecurity

  We will deliver semi-structured qualitative interviews with people with terminal illness (and/or their families/bereaved families) to explore the experience of financial insecurity for those who may have had problems with living costs crisis. We will also interview referrers and service provider workers to explore their experience of providing financial support/advice for someone with terminal illness.

  Day 1

Study Arms (3)

People with terminal illness and/or their families/bereaved families.

20 People with terminal illness (and/or their families/bereaved families) who have received financial support, and or have experience of applying for financial support/advice.

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

Referrers of financial support services for living costs

10 Referrers (i.e., social workers, doctors, admiral nurses, nurses)

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

Financial support service workers

10 Financial support service workers

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

Interventions

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

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

Financial support service workers; People with terminal illness and/or their families/bereaved families.; Referrers of financial support services for living costs

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

Participants will be recruited across England and Wales.

Sponsors & Collaborators

• University College, London: lead
• Cardiff University: collaborator

Study Sites (2)

Cardiff University

Cardiff, United Kingdom

Location

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

London, United Kingdom

Location

MeSH Terms

Interventions

Economics

Intervention Hierarchy (Ancestors)

Health Care Economics and Organizations

Study Officials

• Emily Harrop, PhD

  Cardiff University

  PRINCIPAL INVESTIGATOR

• Nuriye Kupeli, PhD

  University College, London

  STUDY CHAIR

Central Study Contacts

Nicola White, PhD

CONTACT

+44 (0) 2076799057; n.g.white@ucl.ac.uk

Alessandro Bosco, PhD

CONTACT

alessandro.bosco@ucl.ac.uk

Study Design

• Study Type: observational
• Observational Model: OTHER
• Time Perspective: CROSS SECTIONAL
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: January 20, 2025
• First Posted: January 27, 2025
• Study Start: March 1, 2025
• Primary Completion: December 1, 2025
• Study Completion: December 1, 2025
• Last Updated: January 30, 2025

Record last verified: 2025-01

Data Sharing

• IPD Sharing: Will share
• Shared Documents: STUDY PROTOCOL
• Time Frame: Study documents will be archived for a minimum of 5 years from the study end, and no longer than 20 years from the study end.
• Access Criteria: Research outputs (anonymised) can be made openly available

Locations

GB (2)