People with Terminal IllnessNCT06793631
Mapping Financial Support for the Terminally Ill
An observational study of People with Terminal Illness, run by University College, London at 2 sites in United Kingdom.
Trial 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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- People with Terminal Illness
- What is being tested?
- Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costs
- How many people
- 40 participants
- Where
- 2 sitesUnited Kingdom
- Study dates
- Mar 2025to Dec 2025
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Study population: Participants will be recruited across England and Wales.
Who may be able to join
None listed.
Who cannot join
- 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.
Trial locations and contacts
2 sites in 1 country. Contact the study team or a site near you to ask about taking part.
Alessandro Bosco, PhD contact
United Kingdom2 sites
Cardiff University
Cardiff
Emily Harrop, PhD, HarropE@cardiff.ac.uk
Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London
London
Nicola White, PhD, +44 (0) 2076799057, n.g.white@ucl.ac.uk
Alessandro Bosco, PhD, alessandro.bosco@ucl.ac.uk
About this study
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
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.
Read more
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.
Read the detailed description
This is the first study to explore this area and will scope what support exists and where gaps are, in terms of provision specifically for people with terminal illness. The investigators will also explore barriers and facilitators to providing and accessing financial support at different levels (individual, community, organisational, structural). This research will produce a point-in-time map of financial support services and a report of recommendations for how policy makers in England and Wales can address barriers and gaps in service provision. The focus will be on England and Wales as Scotland and Northern Ireland have devolved policies and infrastructure for provision of financial support, but our recommendations may have implications for these nations.
Aim(s): The overall aim of this research is to understand the availability, suitability, and accessibility of voluntary sector and local government financial support schemes for people living with terminal illness, and their families, in England and Wales. This will be achieved through the following objectives, completed in two phases.
Phase 1: Quantitative survey Objective 1. Mapping financial support services provided by voluntary organisations and local government that people with a terminal illness (and their families) are eligible to apply for across England and Wales.
Objective 2. Comparing availability of, and access to, financial support for different population groups and by geographical areas, including regions with differing deprivation profiles.
Phase 2: Qualitative interviews Objective 3. Understanding the experiences and perceptions of financial support from the perspective of a person living with terminal illness and their family, the referrer, and those providing financial support.
Ethical approval has been granted through University ethics for objectives 1 and 2 (phase 1) of this research (UCL REC reference 26921.001), on the 19th of February 2024).
- Conditions
- People with Terminal Illness
- Being tested
- Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costs
- Keywords
- terminal illness, financial insecurity, mapping analysis, living costs
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costsOther
There is no intervention for participants. Participants will receive qualitative interviews to explore their experience of financial insecurity
| Study group | Role | What they receive |
|---|---|---|
| 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. Receives: 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) Receives: 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 Receives: Other: Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costs |
What is being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: Day 1
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted27 Jan 2025
- Study startMar 2025 (estimated)
- Primary completionDec 2025 (estimated)
- Study completionDec 2025 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for People with Terminal IllnessStudies of the same condition, open and under way.
- More trials run by University College, LondonThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Cross-sectional
- Enrolment
- 40 participants (estimated)
Sponsor and investigators
- Lead sponsor
- University College, London
- Sponsor type
- University, hospital or other
- Collaborators
- Cardiff University
- Responsible party
- Sponsor
- Investigators
- Emily Harrop, PhD, Principal investigator, Cardiff UniversityNuriye Kupeli, PhD, Study chair, University College, London
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06793631
- Sponsor's protocol ID
- REC Reference: 24/WM/0209
- Other IDs
- Marie Curie grant (MC-22-506)
- Status last verified
- Jan 2025
- First submitted
- 20 Jan 2025
- Last updated
- 30 Jan 2025
- Results posted
- No
- Data monitoring committee
- Yes
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Yes: Metadata will consist of: interview transcripts, study notes (researcher reflexive notes) and this will be (once anonymised) stored in an open UCL repository. Data will be anonymised once the data collection has ended, and the analysis has been completed. The data will be stored for a period of twenty years, following UCL guidelines. UCL and each participating site recognise that there is an obligation to archive study-related documents at the end of the study (as such end is defined within this protocol). The Chief Investigator confirms that he/she will archive the study master file at UCL for the period stipulated in the protocol and in line with all relevant legal and statutory requirements. The Principal Investigator at each participating site agrees to archive his/her respective site's study documents in line with statutory requirements.
Study at a glance
From the registry record, last updated by the sponsor on 30 Jan 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- 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
- ClinicalTrials.gov ID
- NCT06793631
- Acronym / sponsor ID
- REC Reference: 24/WM/0209
- Conditions
- People with Terminal Illness
- Keywords
- terminal illness, financial insecurity, mapping analysis, living costs
- Study type
- Observational
- Recruitment status
- Not yet recruiting
- Enrolment
- 40 participants (estimated)
- Lead sponsor
- University College, LondonUniversity, hospital or other
- Collaborators
- Cardiff University
- Study start
- Mar 2025 (estimated)
- Primary completion
- Dec 2025 (estimated)
- Study completion
- Dec 2025 (estimated)
- First posted
- 27 Jan 2025 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Detailed description
This is the first study to explore this area and will scope what support exists and where gaps are, in terms of provision specifically for people with terminal illness. The investigators will also explore barriers and facilitators to providing and accessing financial support at different levels (individual, community, organisational, structural). This research will produce a point-in-time map of financial support services and a report of recommendations for how policy makers in England and Wales can address barriers and gaps in service provision. The focus will be on England and Wales as Scotland and Northern Ireland have devolved policies and infrastructure for provision of financial support, but our recommendations may have implications for these nations.
Aim(s): The overall aim of this research is to understand the availability, suitability, and accessibility of voluntary sector and local government financial support schemes for people living with terminal illness, and their families, in England and Wales. This will be achieved through the following objectives, completed in two phases.
Phase 1: Quantitative survey Objective 1. Mapping financial support services provided by voluntary organisations and local government that people with a terminal illness (and their families) are eligible to apply for across England and Wales.
Objective 2. Comparing availability of, and access to, financial support for different population groups and by geographical areas, including regions with differing deprivation profiles.
Phase 2: Qualitative interviews Objective 3. Understanding the experiences and perceptions of financial support from the perspective of a person living with terminal illness and their family, the referrer, and those providing financial support.
Ethical approval has been granted through University ethics for objectives 1 and 2 (phase 1) of this research (UCL REC reference 26921.001), on the 19th of February 2024).
Study design
- Observational model
- Other
- Time perspective
- Cross-sectional
- Number of arms
- 3
| Arm | Type | Receives |
|---|---|---|
| People with terminal illness and/or their families/bereaved families. | – | Other: Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costs20 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. |
| Referrers of financial support services for living costs | – | Other: Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costs10 Referrers (i.e., social workers, doctors, admiral nurses, nurses) |
| Financial support service workers | – | Other: Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costs10 Financial support service workers |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
- Study population
- Participants will be recruited across England and Wales.
Key inclusion criteria (0 listed)
Key exclusion criteria (1 listed)
- 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.
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| Participants will be interviewed qualitatively about experience of providing/receiving financial support for living costsThere is no intervention for participants. Participants will receive qualitative interviews to explore their experience of financial insecurity | Other | Financial support service workers, People with terminal illness and/or their families/bereaved families., Referrers of financial support services for living costs |
Primary outcome
Financial insecurity
Time frame: Day 1
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.
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 30 Jan 2025.
- Individual participant dataSharing planned: Yes. Metadata will consist of: interview transcripts, study notes (researcher reflexive notes) and this will be (once anonymised) stored in an open UCL repository. Data will be anonymised once the data collection has ended, and the analysis has been completed. The data will be stored for a period of twenty years, following UCL guidelines. UCL and each participating site recognise that there is an obligation to archive study-related documents at the end of the study (as such end is defined within this protocol). The Chief Investigator confirms that he/she will archive the study master file at UCL for the period stipulated in the protocol and in line with all relevant legal and statutory requirements. The Principal Investigator at each participating site agrees to archive his/her respective site's study documents in line with statutory requirements.
Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Alessandro Bosco, PhD contact
Emily Harrop, PhD principal investigator
Cardiff University
Nuriye Kupeli, PhD study chair
University College, London
2 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of People with Terminal Illness, run by University College, London at 2 sites in United Kingdom.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 0 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: opening soon, as of the sponsor's last update on 30 Jan 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 2 sites in United Kingdom. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Nicola White, PhD (+44 (0) 2076799057, n.g.white@ucl.ac.uk), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Financial insecurity (time frame: Day 1). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 30 Jan 2025.