John MacArtney

@johnmacartney.bsky.social

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Marie Curie Associate Professor Sociologist of dying, palliative and end-of-life care, and bereavement. https://profiles.warwick.ac.uk/u1772723-john-macartney

Abstract Objectives: Prognostic uncertainty is common in advanced illness, driven by multimorbidity, treatment complexities and unpredictable disease trajectories. When inadequately acknowledged or discussed, it can lead to patient and family distress and inhibit decision-making. We aimed to build a programme theory of how, why and for whom communication of prognostic uncertainty ‘works’ (or not) in advanced illness and palliative care contexts. Design Realist systematic review, reported according to RAMESES criteria. Results From 4634 search results, we included 205 studies with 46 579 participants across 11 countries. The final programme theory identified contexts of communication: socio-cultural norms and values, patient and family preferences, communication models and interventions, clinician uncertainty tolerance, training and experience. Mechanisms of communication were mediated by the care relationship, the timing and initiation of discussion, the content of communication and explicit versus implicit communication. Relevant outcomes were emotions, hope, distress, decision making and care planning. There was no single model of effective communication as this varied based on individual characteristics and preferences, but openness was usually viewed positively. Conclusion This programme theory provides a new understanding of the contexts and mechanisms, such as explicitness of discussion, that support effective communication of prognostic uncertainty across advanced illness contexts to reduce distress and aid decision making. Sociocultural factors are important, but they have the most limited supporting evidence, especially in low- and middle-income countries. The model presented here may support professionals in individualised and compassionate communication of prognostic uncertainty
Screenshot of journal title: "Communication of palliative care needs in discharge letters from hospice providers to primary care: a multisite sequential explanatory mixed methods study".
Screenshot of paper title: "Improving specialist palliative care discharges from hospitals and hospices to community settings: a qualitative interview study of the communication experiences of patients, carers, and primary care professionals"
Man wearing a mask speaking next to a lectern in front of a projection of a slide from the presentation.
Study poster saying: Join our study! Are you a research academic based in higher education? If so, we would like to talk to you about your experiences of academic failure and what accommodations you think could be made to support researchers navigate non-success in higher education. What is the research about? “Failure” in academic research can include things such as research grant or paper rejections, non-promotion, or supervisor feedback. But despite it being a predominant feature of academia, it has often been treated as an individual problem or side issue. Recently, there has been an increase of initiatives to address experiences of non-success in higher education, from supporting individual academic’s wellbeing to seeking changes to wider research culture. This study is interested in hearing about academic researcher’s experiences of “failure”. We would like to talk to academics at any stage of their career – however you identify it, with any form of employment contract, in any department. What will I have to do? We would like to invite you to participate in an in-depth interview remotely over Microsoft Teams where you will discuss your experiences of non-success in academic research culture. You will be asked about: - Personal experiences and understandings of academic “failure”; - Experiences of coping with non-success, including what, if any, support has been useful, and; - Thoughts on what can be done to support academics experiencing “failure” in research. The interview will take approximately 60 minutes, and you will receive an e-voucher as a thank you for your time. For further information, please use your institutional email address to contact us (Dr Celia Bernstein, Dinesh Passi) via researchculturestudy@warwick.ac.uk
1.Letter content specific to specialist palliative care: Letters should include standard information such as diagnosis in addition to palliative care information such as advanced directives, ReSPECT form information, and preferred place of care and death. 2.Letters to patients and carers: Patients should receive and/or be offered their letters in line with existing good practice guidance. Patients should be asked if they would like the discharge letter to be shared with a carers, close person or family member. 3.Follow-up after discharge: The letter/information must make it clear who is responsible for follow-up and the point of contact post-discharge including a telephone number for queries. 4.Medication information and instructions for patients and carers: A checklist of medications or equivalent is useful, to include (changes to) medications, doses and timings. Patients and carers must be familiarised with routes of administration before discharge.
Priority 20: How can discharge from hospital be improved for people with any serious life-limiting illness?
Abstract Background: Patients who have received specialist intervention during periods of complex symptom and palliative care needs (e.g. pain crisis) may be discharged from specialist palliative care services to primary care. Despite such discharges being reasonably common, little is known about what happens during this process. We sought to explore patient, carer and healthcare professional experiences, identifying ways to improve this crucial and time-sensitive part of the healthcare journey. Methods: A qualitative interview study designed using an interpretive approach and reflexive thematic analysis methods. Sampling was purposive across six specialist palliative care sites (hospitals and hospices) and six general practices. Results: A total of 38 participants took part in interviews:15 patients, 8 carers and 15 primary care professionals. Two overarching key themes were developed. The first described the multiple ways that ‘discharge’ was understood depending on the setting and circumstances of the patient. The second explored what was associated with better or worse transitions to primary care. Discharge communications that were accurate and complete were described as effective whereby written information reinforced verbal instructions and acted as a reminder. Participant suggestions for improving these discharge communications included: incorporating the patient’s palliative care preferences (e.g. advanced directives); offering letters to patients and, where appropriate, carers; providing post-discharge follow-up and contact details; ensuring medication instructions are accessible to patients and carers. Conclusions: Current specialist palliative care discharge communications risk confusion, distress, and increased workload post-discharge. The study identified numerous suggestions professionals could take to improve this process.
What does ‘normal dying’ mean? Are you a fully-qualified GP working in England, and do you provide palliative care as part of your role as a GP? If so, we would like to invite you to share your views on the meanings and values of understanding dying as a normal, ordinary or natural process in primary palliative care. Who can participate? - Fully-qualified General Practitioners (i.e. not registrars) - Currently involved in primary palliative care provision in England - Experience of palliative care provision as a GP (i.e. not as a palliative care specialist) - Palliative care provision must be in primary care settings: Home, care home (which includes supported living, residential homes, nursing homes etc) and GP surgery, but not in hospice or hospital. What is involved? - A 30-to-45-minute virtual interview. You will be asked about your experiences of supporting people at the end of life and what ‘normal’, ‘ordinary’ or ‘natural’ dying means to you. If you would like to participate, or would like to know about this study, please use your NHS email to contact us (Dr Hyun Yu hyun.yu@warwick.ac.uk). Please provide your GMC number for verification
Join our study! Are you a research academic based in higher education? ​ If so, we would like to invite you to an engagement workshop to discuss recommendations and accommodations that can be made to support researchers when navigating failure in higher education.​ What is the research about?​ Failure is often a predominant feature of academic research and can include things such as research grant paper rejections, non-promotion or supervision upgrades. We are asking you to share your views on a framework of recommendations we have developed including the usefulness of the recommendations identified.​ We would like to talk to research academics at any stage of their career (early, mid or late) who:​ Hold a research post including – PhD students, Postdoctoral researchers, Research Assistants, Associates or Fellows, Senior Research Fellows, Readers, Assistant Professors, Associate Professors or Professors (clinical or non-clinical).​ ​What will I have to do?​ We would like to invite you to attend a focus group remotely over Microsoft Teams where you will discuss your experiences of failure in academic research culture. You will be asked: ​ Thoughts on accommodations to maintain wellbeing whilst navigating failure.​ To feedback on a framework of recommendations developed by the research team and how it could be implemented across research cultures. This might include what works for whom and when in regard to this topic.​ ​The focus group will take between 90-120 minutes and you will receive an e-voucher as a thank you for your time. ​ For further information, please use your institutional email address to contact us:​ Dr Celia Bernstein​ researchculturestudy@warwick.ac.uk
Screenshot of the report title page: To Know Dying Identifying research areas in palliative and end of life care for the social sciences and humanities Authors and affiliations: Mari Greenfield, Research Fellow, The Open University, UK Erica Borgstrom, Professor of Medical Anthropology, The Open University, UK Briony Hudson, Associate Director, Internal Research Development, Marie Curie, John I MacArtney, Marie Curie Associate Professor of Sociology of Dying and Palliative Care, University of Warwick, UK. Corresponding author: Professor Erica Borgstrom, erica.borgstrom@open.ac.uk Advisory Group (in alphabetical order by surname): Laura Able, Sabine Best, Molly Conisebee, Nicola Fuller, Joanne Goddard, Edina Harbinja, and Corinna (Cora) Jaitner
Poster: Call for LGBTQIA+ Participants to share their stories of End-Of-Life Experience Research has shown the inequities in access to affirming and effective end of life care for LGBTQIA+ people. In response, this project will centre the recording and archiving of LGBTQIA+ End Of Life experiences and the co-creation of film works to foster awareness, understanding and incite structural change to care services. Note: Your contributions/stories can remain entirely anonymous if you prefer. Transport to workshops will be provided, along with a £50 gift voucher to project participants at the third workshop (and are not conditional on the participant completing a film). This project is supported by Compassionate Communities and Warwick University and is a continuation of the Life: Moving (2016) film work by Michele Aaron (Professor of Film and TV Studies, Warwick) and will be facilitated with queer filmmaker, El Jones (XYZ Projects, Birmingham) and Helen Juffs (End of Life Doula, Compassionate Communities). As part of a Community Film Project commencing in Birmingham, Late March/April 2025. If you’re interested in learning more or participating, please contact Emma at: emmahodges@compassionate-communitiesuk.co.uk
Screenshot of report's title page giving title and authors (all included in main message).
Screenshot of programme grid: Presentation title: "Secondary Analysis of JLA Data to Identify Research Areas in Palliative and End of Life Care for Social Science and Humanities". Presented by: "Professor Erica Borgstrom, Professor of Medical Anthropology, Open University & Dr John MacArtney, Marie Curie Associate Professor, University of Warwick and Marie Curie Hospice West Midlands."
Screenshot of: Title: An interpretative qualitative case study of a Compassionate Cities initiative in the United Kingdom: Lessons for implementation in other settings Abstract Objectives Compassionate Cities are a novel approach to health-promotive palliative care that uses a population-based approach to promote health and encourage its citizens to act with confidence to help others during death, dying, or bereavement. This study aimed to provide a critical account of how the leaders of a Compassionate City adopted the initiative and how they experienced its development and implementation. Methods An interpretative qualitative case study was conducted in a newly established Compassionate City in the UK. Data was collected using in-depth interviews, documentary analysis, and non-participatory observations. Reflective thematic analysis was used to analyze the contents of the multiple resources. Results Five observations, 4 document analyses, and 11 interviews with members of the Compassionate City steering committee were conducted. We identified 4 themes: right model, right people, in the right place, at the right time; building a network of organizations and individuals; building sustainable community capacity to deal with grief, loss, and bereavement; and, embedding and sustaining the Compassionate City initiative. The study also found that cross-cutting factors such as leadership, visibility of work, evaluation, communication, and funding influenced and shaped the key themes when developing and implementing the Compassionate City. Significance of results This study provides broad insight into the key actions taken by the leaders of a Compassionate City aiming to improve the end-of-life experience of its citizens. We highlight the many challenges and complexities faced by the leaders when translating the concepts of Compassionate Cities into practice and identify key elements to consider for the successful implementation of future initiatives.
“Through peer support, men provide therapy to each other”: A Q&A on the importance of Men’s Sheds. How can a shed at a hospice help men who are grieving and living with a terminal illness? We spoke to researchers to find out.
Photo of a large shed with a quote "I believe the Men's group is an essential part of the [hospice] service. To be blunt I think every hospice should have a group of this kind... it's a way of coming to terms with your loss" Stephen.
Screenshot of blog titled "Does palliative care have a problem with…'the c-word'?" with take home messages: (1) Hospice staff are still struggling with the emotional implications of working through the emergency period and foreground ways of getting back to pre-2020 “normal”, but also recognise there is a ‘new normal’ that includes COVID affecting patients’ amount and quality of life left, which can get pushed to the background. (2) This tension reflects the wider “living with COVID” approach in healthcare, which assumes people have time and capacity to recover from infections. (3) The uncertainty staff expressed suggests that hospice palliative care needs to engage in more explicit reflection on what ways of mitigating COVID-19 best fulfil a core value of promoting quality of life left.
Screenshot of paper title and abstract: “Backlash!”? A qualitative exploration of hospice palliative care staff’s ongoing experiences of “living with covid”
Screenshot of paper title and abstract: “Backlash!”? A qualitative exploration of hospice palliative care staff’s ongoing experiences of “living with covid”
Screenshot of a conference abstract titled, "Narrating Crisis in the COVID-19 Pandemic: Experiences of Patients, Carers, Staff and Senior Managers of Hospice Palliative Care in the UK"
Poster advertising Marie Curie conference. Text reads: "The Marie Curie Conference 2024. A Spotlight on: Addressing support needs of staff, Monday 5 February 2024, 3pm to 4pm. Chaired by: Dr John MacArtney, Marie Curie and University of Warwick".