PhD studentship: the experiences of patients with palliative care needs and their carers for those who have no recourse to public funds (NRPF) - outline

Funded by the University of Hertfordshire (UoH) and the NIHR Applied Research Collaboration (ARC) East of England

Introduction

This proposal for a doctoral studentship sets out an achievable three-year project (1.0 FTE) addressing a significant gap in existing research and an urgent need to research service access and delivery and the experiences of people with palliative care needs and their carers who have no recourse to public funds (NRPF).

The successful student will be registered at the University of Hertfordshire with Professor Kathryn Almack as Principal Supervisor. Kathryn is a sociologist with expertise in palliative and end of life care research. She is an experienced researcher and doctoral supervisor whose work addresses sensitive and ethically challenging topics and research with frequently overlooked groups. Professor Stephen Barclay will be second supervisor. Stephen has worked in Palliative and End of Life Care research for over 20 years. He is Clinical Lead in End of Life Care for the Cambridge and Peterborough CCG and is Clinical Lead for the East of England Palliative and End of Life Care Strategic Clinical Network. He leads the Palliative and End of Life Care Theme of the NIHR Applied Research Collaboration (ARC) East of England and co-leads the national cross-ARC PEOLC Collaborative with colleagues in ARC South London. The studentship will be supported as part of the NIHR Applied Research Collaboration (ARC) East of England and will link to two of the ARC research themes: Palliative and End of Life Care and Prevention and Early Detection in Health and Social Care .

The student will also have access to a base at St Christopher’s Hospice in the Centre for Awareness and Response to End of Life (CARE centre), which is a leading and world-class education and research centre. This will provide the student with support in discussing and developing their work in addition to their academic supervision and access to additional expertise and networks; including support from Claire Henry. There is also the potential to develop new networks between those who have expertise in the delivery of palliative and end of life care and organisations who have expertise in working with people with no recourse to public funds. It will also be important to convene a Patient and Public Involvement (PPI) group for this doctoral research study, and we will work with the student to develop and convene this group.

Brief background

Nearly 1.4 million people in the UK don’t have access to the welfare safety net[1]. This 2019 figure represents those that held valid UK visas that would usually have a condition attached to them restricting access to public funds. In reality, this number may be far greater when also factoring in illegal entrants and visa overstayers. The ‘no recourse to public funds’ (NRPF) policy has been found to have a disproportionate impact on women, low-income families, disabled people and black and minority ethnic (BME) communities1. A person with NRPF is prohibited from accessing public housing and specified benefits including, but not limited to, disability living allowance, housing benefit and child tax credits. A person’s immigration status and future immigration applications can be affected if they erroneously claim a public fund they are not entitled to and, in some cases, it is a criminal offence[2].

For people with NRPF approaching the end of their life and/or their carers, these individuals may face significant disadvantage in terms of lack of access to:

* welfare benefits, social housing, and wider social and emotional support

* primary care services, such as being registered with a GP

* secondary care services, such as hospital teams and investigations

* palliative care units

Some provision e.g. hospices are not counted as a ‘public fund’ and are therefore available to people with NRPF and their carers. Access to NHS services are subject to a surcharge payment which is beyond the reach of many people with NRPF. People with NRPF may also be reluctant to come to the attention of any services. As a result, people may have their condition diagnosed at a later stage, be experiencing a worsening of symptoms and have limited options available for treatment. This is in addition to potentially dealing with ‘right to remain’ legal issues and being faced with threat of deportation. These factors all add to an increased burden and stress placed on the patients and their carers.

This proposal will build on a project led by Claire Henry for St Christopher’s Hospice[3], which sought to increase understanding and explore the issues faced by this vulnerable group of people. The project identified significant additional challenges faced by patients with palliative care needs and their carers when they have NRPF. It highlights inequalities in access to and provision of palliative and end of life care and issues that are hidden and relatively uncharted due to its sensitive nature. Like many non-UK nationals, people with NRPF may face language and cultural barriers which serve as deterrents and obstacles in accessing support. It further exacerbates the systems of discrimination and oppression which already operate against these individuals. There is also emerging evidence that the intersection of the COVID-19 pandemic with changes in the immigration system following Brexit, is creating additional hardship for people with NRPF.

The project identified an urgent need for more research to be undertaken. To date there are no reliable figures on the size of this palliative and end of life care population. There is very little research evidence to assess how Primary Care services, hospital teams, hospices and specialist palliative care units can best support those with NRPF, their carers and families. The literature that is available (mainly from social work, NHS and homelessness services) is limited and insufficient. What does exist tends to focus only on protected subgroups such as asylum seekers. The literature concerning how hospices can best support carers with NRPF is non-existent.

Proposal

This will be a mixed methods project to scope out the magnitude and experience of the problem for this population of palliative care patients and their carers who have no recourse to public funds. The reach of the project will be about palliative care provided across all settings although that will be for further discussion with the student.

The outcome will be to provide research-based evidence to support the palliative care sector as a whole to meet the needs of palliative care patients with NRPF and their carers. Data collection might include the use of surveys, demographic data, requests under the Freedom of Information (FOI) Act 2000 and/or using Parliamentary Questions, interviews and focus groups. It will facilitate the student developing expertise across a number of fields, including palliative and end of life studies, migration studies, social and political policy.

Timetable

The timetable is set out below, bearing in mind that there will be some overlap between the different parts of the project which may crossover Years 1-3:

Year 1:

  • Training and development of research skills, ethics, methodologies, and design; literature searches; reflexive and critical thinking; conducting and disseminating research.
  • Undertake a full literature review (systematic or critical review) of relevant literatures in the field as well as a critical review of policies related to the topic.
  • Develop the proposal to submit for ethical approvals.
  • Commence quantitative research to identify and record the number of people with NRPF and their carers who are in receipt of hospice care or other palliative care services (this will build on the initial NRPF project led by Claire Henry and referred to above).

Year 2:

Continue the quantitative research; we envisage preliminary analysis will help to inform the development of a sampling framework for the qualitative phase of the study.

Commence qualitative fieldwork to explore the experience of the problem from an individual, policy and service perspective. This will be designed to capture experiential information including examples of good practice.

We will work with the student to develop the qualitative sampling framework and recruitment, research settings, methodologies. This will include considerations of issues of accessing hidden populations and potential need for translators. We envisage the sample will include interviews with patients with palliative care needs, their carers and families; focus groups with practitioners who deliver hospice and other palliative and end of life care services; focus groups with staff from organisations who have expertise in working with people with no recourse to public funds and other relevant agencies; interviews with policy makers. The qualitative data will be audio recorded (with permissions), transcribed and then anonymised. Fieldnotes will be collected throughout the project.

Year 3: Analysis

Given the issues facing patients and their carers/families who have NRPF are hidden and relatively uncharted, we envisage the quantitative analysis may be descriptive but it will help to contextualise the more detailed qualitative work and assist in estimating the generalisability of the qualitative findings.

From the interpretative paradigm, we envisage the analytical approach to the qualitative data will involve a thematic and narrative analysis to develop an in-depth understanding of the topic in question. In doing so, the analysis will proceed reflexively, and draw on both narrative and thematic approaches to present the analysis. Qualitative data will be coded in NVivo software to optimise data management and transparency. Initial coding will be ‘sense checked’ with a research user partner.

Dissemination

This important research will provide much needed evidence to identify and respond to the needs of patients and their carers/families who have NRPF. The student will be able to contribute to academic knowledge and debates within palliative and end of life care studies and ethnic and migration studies. The project also has the potential for significant impact which will be enhanced by the student’s base within St Christopher’s Hospice CARE centre and developing networks with establishing strategic relationships with partner organisations such as advocacy groups and migrant centres. There is the potential for the research to feed into the development of learning packages for use in hospitals, schools and support networks to bring increased understanding of the needs of this population. Increasing awareness, knowledge and understanding may go some way to increasing tolerance, by reducing “otherness”, and to educating health, social and pastoral care providers in best practice. It is hoped that this will translate into higher standards of dignified, compassionate care for the population of people with NRPF.