Jodie Crooks

BACKGROUND Currently many people do not receive adequate care at the end of life and demand for palliative and end of life care is projected to rise rapidly. Evidence of care experiences is needed to inform improvements in end of life care availability, quality and equity. Previous surveys in the UK contributed such evidence but most were discontinued, one-off or have a focus on the last few days of life. None cover all UK nations. OBJECTIVE The Reflections on care in the last three months of life (REFLECT) survey aims to collect experiences of care in the last three months of life from bereaved adults’ perspective in all UK nations, planned for repetition every two years. METHODS We will survey 5,000 UK adults bereaved in the last two years following the death of an adult with a terminal or life limiting illness, recruited via market research panels. The cross-sectional online survey will include modules on types of care received, care coordination, out of hours care, symptoms and unpaid care. A Lived Experience Group will support survey development and dissemination. Ethical approval was granted by University College London Life and Medical Sciences Research Ethics Committee (project ID 3444). Respondents will provide informed consent after reading an information sheet. RESULTS By end August 2026, 4,309 responses had been collected. A first report of survey data will include descriptive statistics, predefined subgroup analyses, and Reflexive Thematic Analysis of open-text responses. CONCLUSIONS The data and research generated from this survey will initially be disseminated through a report, policy briefings and stakeholder events, followed by academic publications and conferences. Anonymised data will be deposited in a research repository for use by other researchers after completion of planned research. Findings will inform the development of improved services and policies for palliative and end of life care.

Objectives To explore priorities, barriers to and experiences of palliative and end-of-life care from the perspectives of people living with HIV. Design Cross-sectional online survey conducted in the UK between September 2024 and November 2024. Setting Online survey of people living with HIV. Participants The sample (N=90) was adults living with HIV in the UK. The majority of participants were male (82.4%), gay men (77.8%) and white (88.1%). Results The majority of participants (58.9%) reported knowing what palliative care was and that they could explain it to someone else; however, a misconception about palliative care being only for the end of life was evident. Over a quarter of respondents (27.8%) reported that their HIV status ‘Sometimes’ negatively affected their experiences of care in general practitioner, hospital and dental settings. The top three priorities for end of life were (1) being in a calm atmosphere, (2) being free of pain and (3) support with psychological well-being. Not being judged was also identified as a priority. Conclusion To promote integration of palliative and end-of-life care into care pathways for people living with HIV, partnerships with HIV services and charities may be needed as well as tailored messaging and training for staff in generalist services.

In 2025, Marie Curie and other partners launched the results of a refreshed Priority Setting Partnership with the James Lind Alliance, to identify priorities for palliative and end of life care research, based on the views of people affected by serious life limiting illness. To our knowledge, this was the first Priority Setting Partnership to have a dedicated group of people with lived experience as equal partners in the research. This paper provides reflections for other researchers considering embedding a Lived Experience Group into future Priority Setting Partnerships and provides evidence of the positive impact that this can bring. Data on involvement impact and experience was collected using the Public Involvement in Research Toolkit (PIRIT), semi-structured interviews with Lived Experience Group and Steering Group members, and a short online survey for Lived Experience Group participants. The PIRIT tracker recorded 66 impacts throughout the project, which included shaping the project, refining data collection tools, influencing language, encouraging diverse responses, and aiding dissemination. Forming a Lived Experience Group to support the refresh of the Palliative and End of Life Care Priority Setting Partnership ensured that people with lived experience of dying, death and bereavement had a clear route for involvement in all stages of the project. This regular and consistent engagement required considerable resource but shaped the project in several ways and ultimately improved its quality. The James Lind Alliance is an organisation that seeks to find out what people with lived experience see as the priorities for research about different topics. There is a set way of doing this, which involves two online surveys and a workshop to decide which of the questions identified are the most important for research to address. In 2025 Marie Curie, in partnership with the James Lind Alliance and other organisations published a refresh of the Palliative and End of Life Care Priority Setting Partnership first published in 2015. A Lived Experience Group was set up to enable people affected by serious life limiting illness to shape all aspects of the project. This paper provides reflections from members of the Lived Experience Group and the Steering Group for the project on the process and impact of working in this way. Working with the Lived Experience Group brought insights which influenced and benefited the project, in several ways, from shaping the scope of the project, tools for data collection, methods of analysis and dissemination of the findings. The process of establishing and engaging with the group throughout the project was resource intensive but helped to ensure the project met its aims of identifying priorities for future palliative and end of life care research that aligned with the priorities of people with lived experience. Based on our collective experiences, we provide considerations for other projects looking to work in a consistent and impactful way with people affected by serious life limiting illness.

People experiencing homelessness often don’t have access to the palliative and end-of-life care they may need. To understand how this can be improved, it is important to collaborate with people with lived experience of homelessness when carrying out research. This can add more depth and insight from experience and ultimately create better evidence to improve systems, services and experiences. Since the publication of the TIFFIN recommendations, which support co-production in the field of palliative care and homelessness research, we have implemented these within our research. The current paper describes reflections from team members on a co-produced research project exploring attitudes to death cafes among people with lived experience of homelessness. These learnings could support wider implementation of safe, meaningful co-production in this field, with implications for co-produced research in other fields. We provide a summary of how we implemented the TIFFIN recommendations in the death cafe study, and reflections and learnings from all four team members on this process and on working collaboratively. All team members kept a diary throughout the project. These diaries logged thoughts and reflections pertaining to the research process and involvement. Entries were not scheduled; team members could add to them as they felt necessary. Verbal, group reflections were also gathered at several points during the research. The TIFFIN recommendations helped us co-produce a research project. Aspects which were particularly important were building rapport between team members and facilitating equitable approaches to involvement. For this project, navigating institutional attitudes and resistance was not a major issue, which may be linked to the established relationships between partner organizations. People experiencing homelessness often don’t have access to the palliative and end-of-life care they may need. Due to many complicated factors, their end-of-life experiences may not be as good as they could be. To understand how this can be improved, it is important to collaborate with people with lived experience of homelessness when carrying out research. This can add more depth and insight from experience and ultimately create better evidence to improve systems, services and experiences. Despite the importance and challenges of doing this, until recently there has been a lack of guidance about how to do this in a safe and constructive way. In 2024, we published a set of recommendations called “the TIFFIN recommendations” – which sets out things to think about when planning and doing palliative and end of life care research alongside with people with lived experience of homelessness. In this paper, we report our reflections on using the TIFFIN recommendations, and on co-producing research in this field. All members of the research team kept a diary throughout the project containing reflections on what they felt was important to the work they had done that week. As well as diaries, conversations were held at regular intervals to reflect upon the work done recently. These discussions were mainly between the lead researcher and co-researcher with lived experience but were sometimes attended by the wider research team. The paper includes a summary of how we implemented the TIFFIN recommendations, and reflections and learning from these experiences. Each TIFFIN recommendation was relevant and useful to the development of the project upon which reflections in this paper are based. The importance of engagement and rapport and facilitating equitable engagement were particularly important considerations. For this project, navigating institutional attitudes and resistance was not a major issue, which may reflect the ongoing relationships between the partners involved in this research.

With improvements in antiretroviral therapy (ART), the life expectancy of people living with HIV is increasing towards that of the general population in many countries. As people living with HIV live longer, many are experiencing co-morbidities of age including advanced, life-limiting illnesses. Research has since highlighted both the need for and effectiveness of palliative care for people living with HIV. Therefore, as these co-morbidities become more prevalent, HIV services will increasingly need to draw on a wide range of medical disciplines, including palliative and end of life care. To ensure that research and subsequent policy and practice recommendations for service design and delivery reflect the wishes and priorities of people living with HIV, it is important that people living with HIV are supported to be involved in, and co-produce research in this field, where they wish to. The current study provides reflections from a co-production team including people living with HIV, considering successes and challenges of research involvement in this field. Reflections were gathered from the multi-disciplinary steering group meetings, attended by the co production group. Some members of the co-production were researchers, some were charity representatives and some had lived experience of HIV. These reflections were part of a study that aimed to enable people living with HIV to explore and consider what is important for them at the end of life. Steering group meetings were recorded and transcribed verbatim. Reflexive thematic analysis was used to code data and develop themes relating to how people living with HIV were involved in the research. This paper shares insights from a co-production group, including people living with HIV, on designing and delivering palliative care research. As more adults with HIV require palliative support, aligning care with their needs is essential. Involving people with HIV in research can improve future services and promote fair access to end-of-life support. This paper provides reflections on achieving this. The introduction and advancement of medication such as antiretroviral therapy (ART) has helped reduce transmission of HIV. This has meant that fewer people are dying as a direct result of HIV, and the life expectancy for people living with HIV is almost the same as the general population in many countries. As people living with HIV are living longer, many are being diagnosed with age-related advanced illnesses, such as cancer, respiratory illnesses or dementia. It is important that HIV care services work together with other medical disciplines, such as palliative and end of life care, to ensure a positive care experience in line with a patient’s wishes. Palliative care can be useful to support people living with HIV who are approaching the end of their lives, with or without another illness. Some research suggests that people living with HIV may face barriers in accessing palliative care services. Therefore, it is important to hear from people living with HIV how they would like to be supported towards the end of their lives, so services can be designed with the voices of lived experience at their centre. Research and codesign are needed to gather the information needed. This paper outlines reflections from the co-production group, including people living with HIV, from a research project about how to support people living with HIV to be involved in research about palliative and end of life care.

Background: Advance care planning enables individuals to define goals and preferences for future medical care. Despite advances in research and the production of tools and methods for advance care planning, uncertainty remains regarding whether and which interventions support intended outcomes for patients. This lack of clarity is occurring despite high financial investment into advance care planning research through grant funding, relative to other palliative care areas. Aim: To utilise published reviews to explore the efficacy of current advance care planning interventions, including how they are evaluated, and whether they achieve their intended outcomes for adults living with an advanced illness. Design: Meta-review of reviews. Data sources: Five electronic databases (PubMed, CINAHL, EMBASE, Medline and PsychINFO) were searched for reviews published between 2015 and 2025. Quality of reviews was assessed by the AMSTAR-2 tool. Results: Thirty-nine reviews were included. Fifteen reviews evidenced significantly decreased hospital utilisation in line with patient’s preferences following advance care planning. Fourteen reviews evidenced significant increases in patients receiving care consistent with their goals, and 12 evidenced significant increases in patients documenting their preferences. Evidence on the impact of advance care planning on decisional conflict was mixed. Conclusions: This review highlights where advance care planning interventions significantly impact outcomes defining successful advance care planning. The existence of a range of interventions can accommodate preferences of patients or families regarding how to receive and engage with their options. This heterogeneity is, however, a challenge for synthesising research data to understand the impact of interventions and inform practice.

Background People experiencing homelessness (PEH) often die at a younger age than the general population. Advanced ill-health often occurs late in its trajectory (if at all), leaving many PEH to die without adequate support from hospital-based, hospice-based or community-based palliative care services. Despite the high rate of bereavement and exposure to death among PEH, there are rarely opportunities for them to reflect on their experiences, thoughts and preferences around death or receive bereavement support. Death cafés are a global social franchise, providing a space for people to participate in an open group discussion about death, dying and bereavement. They are free to attend and unstructured but facilitated. Objectives To explore the perspectives of PEH and the professionals that support them with regards to the potential acceptability, benefits and challenges of death cafes. Methods A qualitative study comprising of interviews with nine homelessness and/or palliative care professionals with experience of running death cafés for, or supporting PEH in other ways, and two focus groups with nine people with lived experience of homelessness. The research was co-produced with a lived experience co-researcher forming a core part of the research team. Reflexive thematic analysis was utilised to develop themes. Results Five themes were developed to highlight the perspectives and experiences of death cafés for PEH: choice; expertise in facilitation: recognising risk and the unstructured nature; promoting safety against potential risk; potential benefits and potential practical considerations. Themes highlight the need for a trauma-informed approach. Death cafés could be impactful, where done well, but they are not without risk. Conclusions Death cafés for PEH pose risks that require comprehensive consideration and trauma-informed, expert facilitation. However, this research highlighted that a low-pressure space to explore thoughts around death, dying and bereavement is currently an unmet need within this population.

Objectives Evidence suggests that 61% of adults who were bereaved in the past 5 years had difficulties with at least one practical or administrative task following bereavement. We aimed to explore individual’s experiences of interacting with private sector businesses following a bereavement. Methods Qualitative secondary analysis of data collected via an online survey within the UK Commission on Bereavement. Data from 1133 survey respondents was extracted verbatim, and thematic analysis was carried out. Participants were adults who had experienced a bereavement within the past 5 years and lived in the UK. They were eligible to take part in the survey. Results Three core themes were developed: (1) needs of bereaved people outside of ‘business as usual’, (2) admin burden while grieving and (3) the impact and experience of organisational failures. The results of this secondary analysis outline that bereaved individuals often struggle with several points of interaction with private businesses, including facing resistance when making initial contact, insensitive or non-empathetic interactions, facing unrealistic timelines for administrative tasks that are not then returned by the business, and difficulty understanding and completing paperwork. Participants emphasised the difficulty in navigating this while in the initial period following a bereavement. Conclusions People experiencing a bereavement experience a high degree of mental load and emotional burden linked with interacting with private businesses following a bereavement. Given that this forms only one element of a person’s whole bereavement experience, it is important that changes to policy and practice are made to allow a simple, positive experience for bereaved customers.

Background: Palliative care for people experiencing homelessness is a complex field. Due to the intricate nuances and heterogeneity in the experience of palliative care for people without secure housing, it is essential that research is informed by people with lived experience of homelessness. However, as homelessness is often associated with loss, trauma and high levels of exposure to death, any co-production of research, particularly in the field of palliative and end-of-life-care, must be trauma-informed. Aim: To produce recommendations for co-producing palliative and end-of-life-care research with people with lived experience of homelessness. Design: A qualitative study comprising semi-structured interviews and focus groups. Data were analysed using iterative, reflexive thematic analysis. Setting/participants: Twenty-seven participants were recruited. Sixteen professionals with experience of co-producing research with people with lived experience of homelessness; eleven people with lived experience of homelessness. Results: Six key themes were developed: transparency, importance of engagement and rapport, facilitating equitable involvement via person centred approach, financial recognition of involvement, involvement and growth through a trauma-informed approach and navigating institutional resistance and attitudes. Recommendations corresponding to the core themes were developed (TIFFIN recommendations). Conclusions: Co-production of palliative care research with people with lived experience of homelessness is essential, but must be done carefully and sensitively. As a population with high levels of premature morbidity and mortality yet low access to palliative care, the TIFFIN recommendations could help to support the involvement of people with lived experience of homelessness in palliative and end-of-life-care care research.

Objectives Approximately, 1600 pupils are bereaved by a parent or sibling each year in Northern Ireland, equating to at least one child in every school class. Despite this, many children who are bereaved do not receive support from their school or college. Unsupported childhood bereavement is a risk factor for a number of social, psychological and educational difficulties. We aimed to carry out a service evaluation to explore the impact of a bereavement training course delivered to teaching staff in Northern Ireland. Methods A mixed methods, participant-oriented evaluation was carried out. Data were collected via a survey distributed at baseline (prior to training) and 4-month follow-up, and semistructured interviews. All participants were staff within the school community who had participated in the training. Quantitative survey data were analysed via statistical analysis, and open-text survey responses and interview data were analysed via thematic analysis. Results Quantitative survey responses indicated statistically significant improvements in teachers’ confidence and knowledge on supporting bereaved children after the training. Six key themes were developed from interview data: the impact of the training on teaching staff’s confidence, knowledge, on the schools’ policy and practice, the impact on pupils, and whole school training. Conclusions Given the significant role that teachers have in a child’s formative years, it is essential that teaching staff are adequately trained and equipped to recognise and support both prebereavement and grief in pupils. A whole school bereavement training programme can be effective, as part of a wider culture and practice which values bereavement support in school.