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Category: Project

Description: People living with terminal illness 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. The current evidence around financial service provision and the experience of accessing these services for people with terminal illness and their families is still scant. 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. The study consists of two phases and will be achieved through the following objectives: 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 of financial support from the perspective of a person living with terminal illness and their family, the referrer, and those providing financial support. Anticipated Duration From 02/2024 until 12/2025. Study design: Phase 1. We will first Identify relevant providers of financial services. In this phase, we will systematically search online records on registered charitable databases and local government websites. We will then survey identified organisations through the use of REDCap. The survey is expected to take no longer than 30 minutes and will be completed either on Teams or over the phone with the support of the researcher. The survey will ask for information on the processes of applying for financial support and anonymised aggregated demographic characteristics of those who have applied to their service. All participants will need to consent before completing the survey. Analysis: Survey results will be compiled and we will create a report which will describe the number of services available, location, alongside other information reported. We will link these data to national datasets to map potential regional inequalities, such as rurality, deprivation indices using freely available and anonymised data from the Office of National Statistics. Phase 2. 40 participants will participate in the interview/focus groups to explore the experience of financial support. Participants will be from each of the following groups: 1) 20 People with terminal illness (and/or their families/bereaved families) who have received financial support. 2) 10 Referrers (i.e., social workers, doctors, admiral nurses, nurses). 3) 10 Financial support service workers. Sampling and case selection strategy: We will recruit participants from England and Wales. Participants will be purposively sampled based on the findings from phase 1 and those who might be at higher risk of financial insecurity. For example, people with terminal illness and their families, referrers, and financial support workers based in areas of high deprivation with low access/limited availability of funding, compared to areas that have more accessible funding to explore the reasons for differing availability and accessibility. Targeted sampling will include those from minority groups and low socio-economic backgrounds. Data source(s) and data type(s): Data collection will comprise original data, collected through semi-structured qualitative interviews. Data collection: Semi-structured individual interviews with the patient group will be conducted face to face, by telephone, or online. The interviews will take place either at the local hospice or at the individual’s home, depending on the participant’s preference. The referrer group and financial support group participants will complete either individual interviews or participate in an online or in-person focus group, depending on their preference. A semi-structured topic guide will be developed using knowledge from the previous phase and tailored for each group. Topics will include referral processes, conditions with less predictable prognoses, and experiences of accessing support. Analysis Plan Data analysis approach: Audio-recordings of interviews will be transcribed verbatim. Reflexive thematic analysis will be adopted to understand the intersecting factors that act as barriers and facilitators to accessing and providing financial support at different levels (individual, community, organisational, structural). Data analysis process: The interview transcripts will be analysed by means of the NVivo software 12 which enables to organise the narratives and highlight patterns (codes) emerging form the data set. Two researchers will be involved in data analysis to reduce researcher bias. Upon identification of initial codes, the researcher will further analyse the transcripts and define themes and subthemes in relation to the objective of the study. Study findings will be shared with partnered PPI members to ensure that what we analyse reflects real care scenarios and or does not omit key experiences. Credibility strategies: Member checking Bringing in different perspectives (PPI consultation) Consensus building among team members Peer debriefing/review