The palliative and end of life care experiences, views and needs of Gypsy, Traveller and Roma communities: a systematic literature review and narrative synthesis
Research contact
Dr Kathryn Dixon, Academic Clinical Fellow in General Practice
Email: kcd23@medschl.cam.ac.uk
ORCiD: 0000-0002-6565-6057
Project length
2019 – 2021
Summary
A systematic review of and thematic analysis of the current evidence concerning palliative care experiences, views and needs of Gypsy, Traveller and Roma communities.
Thirteen papers from eight studies were included in the synthesis. Although there was variation between communities, three overarching and inter-related themes were identified. 1) Strong family and community values include a preference for healthcare to be provided from within the community, duty to demonstrate respect by attending the bedside and illness as a community problem with decision-making extending beyond the patient. 2) Distinct health beliefs regarding superstitions around illness, personal care, death rituals and bereavement. 3) Practical barriers to non-community healthcare provision include communication difficulties, limited awareness of and access to services, tensions between patients and healthcare professionals and lack of training in delivering culturally appropriate care. Conclusion: A wide range of factors influence Gypsy, Traveller and Roma community access to palliative care. Community diversity requires sensitive and highly individualised approaches to patient care.
Funding
Health Education East of England
Outputs
Presented at SAPC SE Conference January 2020 and the National GP ACF Conference in March 2020. Currently under review for publication.
Prospectively registered on PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019147905
How do people help their frail older relatives or friends to manage health problems? A qualitative interview study
Research contact
Dr Louisa Polak, Visiting Researcher
Email: lp542@medschl.cam.ac.uk
Project length
2021 – 2022
Summary
I am setting up a new study to examine the “informal” work involved in enabling frail older people to maintain their health and wellbeing at home, work done by people who would not describe themselves as carers. In the NHS we already seek to identify and support carers, but do not generally take account of the everyday teamwork that many older people rely upon. By focusing on this teamwork, the study’s findings will complement the growing body of knowledge about improving self-care for chronic conditions and reducing the need for hospital admission towards the end of life.
Funding
[Application in progress]
Experiences of oldest-old spouses caring for their partner approaching end-of-life: A narrative interview study
Research contact
Tessa Morgan, Woolf Fisher PhD student
Email: tlm32@medschl.cam.ac.uk
ORCiD: 0000-0003-4917-6149
Twitter: @tessalornam
Project length
2017 – 2021
Research summary
Population ageing has rapidly increased the number of people requiring end-of-life care across the globe. Older spouses are frequently providing for their partner’s end-of-life care at home, despite potentially facing their own health issues. Little is known about spouse caregivers over 75 who are likely to face specific challenges associated with their advanced age and relationship status. This group has also been identified as utilising less formal services whilst caring; raising further equity concerns.
This doctoral study comprises a systematic review of the existing evidence, identifying 19 published studies orientated around the themes “embodied impact of care”; “caregiving spouse’s conceptualisations of their role” and “learning to care”. A longitudinal narrative interview study was then conducted between August 2018-August 2019 comprising 41 interviews with 20 participants from 17 older couples. Analysis of these findings are on-going.
The first key finding has been that requiring older people to identify as carers to receive formal assistance leaves one group invisible and the other group unsatisfied with their support options. Older couples should instead be supported as a dyad within the context of greater promotion of their candidacy for support. A second key finding is that the dosette box plays an essential role in making older couples everyday care experiences bearable as well as operating as a “weapon of the weak” for them to monitor their pharamacist’s and GP’s quality of care. A final finding centres on the work these spouses do as “undercover integrators” to connect their partner’s care across care home, hospital and home settings.
Funding
Woolf Fisher Trust, New Zealand. Wellcome Trust (Grant WT103343MA)
Outputs
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Morgan T, Bharmal A, Duschinsky R, Barclay S (2020) Experiences of oldest-old caregivers whose partner is approaching end-of- life: A mixed-method systematic review and narrative synthesis. PLoS ONE 15(6): e0232401. https://doi.org/10.1371/journal.pone.0232401
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Morgan, T., Duschinsky R, Barclay, S. Maintenance Art: Paul Stenner’s liminality and the case of older caregiving spouses Accepted book chapter – Planned publication late 2021.
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Morgan, T., Duschinsky R, Gott, M., Barclay S Do older spouses caring for their partner who is approaching their end-of-life position themselves as carers?– Under review
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Morgan, T., Duschinsky R, Barclay S. “I press the button”: A narrative study exploring how the dosette box makes older spouses end-of-life caregiving bearable – to be sent for review immanently
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Gott, M., Morgan, T., Williams, L. (2020) Gender and Palliative Care: A Call to Arms Palliative and Supportive Care 14:1-15.
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Gardiner, C., Robinson, J., Connolly, M., Hulme, C., Kang, K., Rowland, C., Larkin, P., Meads, D., Morgan, T., Gott, M. (2020) Equity and the financial costs of informal caregiving in palliative care: a critical debate BMC Palliative Care 19(71):1-7.
Self-management at the end of life
Research contact
Joshua Gallagher, NIHR ARC PhD Student
Email: jjmg4@medschl.cam.ac.uk
ORCiD: 0000-0003-3014-3865
Twitter: @JoshJMGallagher
Project Duration
2020 – 2023
Research summary
Supporting self-management or ‘self-care’ for people living with chronic conditions is a current priority in UK health and social care, as described in the NHS Long Term Plan. By enabling better individual management of symptoms caused by disease, it is hoped that patients will be better able to live independently in their homes. However, it is unclear how self-management is experienced at the end of life as dependency on care services grows. With a view to improving self-management I intend to conduct fieldwork to understand this experience and propose ways in which self-management can be improved towards the end of life.
Funding
NIHR Applied Research Collaboration
Anticipatory Prescribing in community end of life care during the COVID-19 pandemic
Research contact
Dr Bárbara Antunes, NIHR ARC Research Associate
Email: bc521@medschl.cam.ac.uk
ORCiD: 0000-0003-1655-7391
Twitter: @B_CP_Antunes
Project length
2020 – 2021
Summary
Anticipatory Prescribing (AP) is the prescribing of injectable medications for community end of life care in advance of need, to ensure that appropriate medication is readily available should troubling symptoms arise in the final phase of life. We conducted a web-based survey in April 2020 to investigate UK and Ireland clinicians’ experiences concerning changes in AP during the COVID-19 pandemic. Two hundred and sixty-one replies were received between 9 and 19 April 2020 from clinicians in community, hospice and hospital settings across all areas of the UK and Ireland. Changes to AP local guidance and practice were reported: route of administration (47%), drugs prescribed (38%), total quantities prescribed (35%), doses and ranges (29%). Concerns over shortages of nurses and doctors to administer subcutaneous injections led 37% to consider drug administration by family or social caregivers, often by buccal, sublingual and transdermal routes. Clinical contact and patient assessment were more often remote via telephone or video (63%). We conducted follow up interviews to some of those participants to have a more in-depth understanding of those changes and if they were sustained 6 months after the first COVID wave. Analysis of those interviews is underway.
Funding
National Institute for Health Research (NIHR) Applied Research Collaboration East of England (ARC EoE) programme.
Outputs
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Antunes B, Bowers B, Winterburn I, et al. Anticipatory prescribing in community end-of-life care in the UK and Ireland during the COVID-19 pandemic: online survey. BMJ Supportive & Palliative Care 2020;10:343-349. https://spcare.bmj.com/content/10/3/343
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Presentation at Hospice UK Zoom ECHO sessions on the 8th of July 2020 hospiceuk.org/docs/default-source/echo/covid-19-echo/max-final-slides.pdf?sfvrsn=2
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Bowers B, Pollock K, Barclay S. (April 2020) “Administration of end-of-life drugs by family caregivers during covid-19 pandemic. Doing this safely needs training, support and careful prescribing”. British Medical Journal: 369: m1615. doi:10.1136/bmj.m1615
Just in Case Drugs Study (JIC Study)
Research contact
Ben Bowers, NIHR School for Primary Care Research PhD Student and Queen’s Nurse
Email: bb527@medschl.cam.ac.uk
ORCiD: 0000-0001-6772-2620
Twitter: @Ben_Bowers__
Project length
2020 – 2022
Summary
Widespread practice in the UK, ‘Just in Case’ drugs seeks to reduce crisis hospital admissions and improve symptom control at home. To date, no research study has looked into how patients and their informal carers (family and friends) view and experience Just in Case drug practice. This qualitative study, involving 6 patients, 9 informal carers and 6 health professionals, helps to address this gap. Field work was completed in December 2020. The study is part of Ben Bowers’ PhD research.
Patients and informal caregivers took part in one to three research conversations, and health professionals in one. The current study analysis is looking for patterns and differences in views, experiences, and Just in Case drugs prescribing and administration practices. Findings will be shared widely with service providers, clinicians and the public to help inform future practice.
Funding
National Institute for Health Research (NIHR) School for Primary Care Research Studentship
NIHR Short Placement Award for Research Collaboration (SPARC) 2020-21
RCN Foundation Professional Bursary Award 2019
Outputs
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Bowers B, Pollock K, Barclay S. Administration of end-of-life drugs by family caregivers during covid-19 pandemic. British Medical Journal 2020; 369: m1615 https://www.bmj.com/content/369/bmj.m1615
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Cambridge News 5 October 2020: Cambridge nurse who cares for people at the end of their lives shortlisted for nursing award
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Bowers B, Lovick R, Pollock K, Barclay S. Patient and public involvement in general practice research. British Journal of General Practice 2020; 70 (694): 220-221 https://doi.org/10.3399/bjgp20X709457
Anticipatory Prescribing in Terminal Care Study (APT Study)
Research contact
Ben Bowers, NIHR School for Primary Care Research PhD Student and Queen’s Nurse
Email: bb527@medschl.cam.ac.uk
ORCiD: 0000-0001-6772-2620
Twitter: @Ben_Bowers__
Project length
2018 – 2020
Summary
Retrospective patient record review study investigating the current practice of issuing and using end of life anticipatory prescribing (‘Just in Case’ drugs) across a range of illnesses in the community. We reviewed 329 patient records (30 per practice) across 11 General Practitioner (GP) practices in Cambridgeshire and Hertfordshire. We identified if and when drugs were prescribed from GP records and the administration of these drugs from community nursing records. The main analysis is now completed, and papers have been submitted for publication. The study is part of Ben Bowers’ PhD research.
The research provides novel and detailed information on current anticipatory prescribing practice, prescribing and administration circumstances, and variations in care. This new knowledge is being shared with members of the public and clinicians to inform personalised care, practice development and interprofessional team working.
Funding
National Institute for Health Research (NIHR) School for Primary Care Research Studentship
RCN Foundation Professional Bursary Award 2018
Outputs
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Bowers B, Pollock K, Dickman A, Ryan R, Barclay S. Anticipatory syringe pumps: benefits and risks. BMJ Supportive & Palliative Care Published Online First: 19 January 2021. http://dx.doi.org/10.1136/bmjspcare-2020-002735
Anticipatory prescribing in community end of life care
Research contact
Ben Bowers, NIHR School for Primary Care Research PhD Student and Queen’s Nurse
Email: bb527@medschl.cam.ac.uk
ORCiD: 0000-0001-6772-2620
Twitter: @Ben_Bowers__
Project length
2017 – 2019
Summary
As a NIHR ARC (CLAHRC) Fellow, Ben Bowers conducted 1) a systematic review on anticipatory prescribing (‘Just in Case’ drugs) in adult end of life care in the community and 2) a qualitative study of General Practitioners’ decisions about prescribing end of life anticipatory medications.
Ben Bowers’ PhD research awarded by the NIHR School for Primary Care Research, takes this work further through the Anticipatory Prescribing in Terminal Care (APT).
Funding
NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Fellowship
National Institute for Health Research (NIHR) School for Primary Care Research Studentship
Outputs
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Bowers B, Ryan R, Kuhn I, Barclay S. Anticipatory prescribing of injectable medications for adults at the end of life in the community: A systematic literature review and narrative synthesis. Palliative Medicine 2019. 33(2): 160-177 https://doi.org/10.1177/0269216318815796
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Bowers B, Barclay SS, Pollock K, Barclay S. General Practitioners’ decisions about prescribing end-of-life anticipatory medications: a qualitative study. British Journal of General Practice 2020; 70(699): e731-739.https://doi.org/10.3399/bjgp20X712625
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Bowers B, Ryan R, Hoare S, Pollock K, Barclay S. Anticipatory syringe drivers: A step too far. BMJ Supportive and Palliative Care 2019; 9: 149-150 http://dx.doi.org/10.1136/bmjspcare-2018-001728
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Bowers B, While A. Getting anticipatory prescribing right in end-of-life care. British Journal of Community Nursing 2019; 21(6): 274-277
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NIHR School for Primary Care Research News 9 May 2019: Nursing award for Cambridge Palliative and End of Life Care research
End-of-Life Controlled Drugs in U.K. Care Homes: A Systematic Literature Review and Narrative Synthesis
Research contact
Megha Majumder, Abbeyfield Foundation PhD Student
Email: mm2426@medschl.cam.ac.uk
Twitter: @megmajumder
Project length
2020 – 2021
Summary
Background: Schedule 1, 2 and 3 controlled drugs (CDs): strong opioids (excluding codeine, dihydrocodeine, and tramadol) and midazolam primarily (oral or injectable) are common medicines for palliating end-of-life symptoms for care home residents in the UK. These medicines are susceptible to misuse and abuse. While prescribing controlled medicines to provide end-of-life symptom relief is a well-established practice, the evidence base to support this practice is lacking.
Aim: To review the published evidence concerning the prescribing of CDs for care home residents at the end of life in the UK.
Methods: Systematic review and narrative synthesis. Data sources include Medline, Embase, PsycINFO, Web of Science, and Cochrane Library, searched from January 2000 up to January 2021. Included papers presented new empirical data on the prescribing of Schedule 1, 2 and 3 CDs for symptom control in UK care home residents at the end of life. Gough’s Weight of Evidence framework was used to appraise the quality of research.
Results: The search yielded 1062 papers, of which 14 have been included in data synthesis. While GPs primarily prescribe CDs, nurses administer them in care homes. Nurses reported feeling inadequately trained, and the attitudes of residents and family members regarding the prescribing process remain largely unknown. Specific aspects of the process are entirely unexplored in the literature including the storage, monitoring, and disposal of CDs. The lack of an evidence base does not allow for robust conclusions to be drawn regarding the effectiveness and comfort CDs are meant to provide.
Conclusion: The practice and policy of storing, monitoring, and disposing end-of-life CDs in care homes, alongside the lack of high quality evidence exploring patient and family members’ perspectives, are significant gaps in the literature and require critical examination in light of the COVID-19 pandemic and rapidly-changing policies around medicines use in care homes.
Funding
Abbeyfield Trust / Research Foundation
End of Life Care prescribing in care homes and in the community in the UK: a mixed-methods study of local policies and procedures.
Research contact
Megha Majumder, Abbeyfield Foundation PhD Student
Email: mm2426@medschl.cam.ac.uk
Twitter: @megmajumder
Project length
2021 – 2021
Summary
Background: The COVID-19 pandemic has led to major changes in the prescribing and use of End-of-Life Care drugs in the community, in particular: changes in AP drugs and doses; greater use of appropriately selected and trained family / lay carers to administer EOLC drugs; national guidance that EOLC drugs prescribed for a care home resident can now be repurposed for another resident if urgently needed.
Aim: To investigate the availability of local / regional policies and procedures to guiding EOLC prescribing practice in community End-of-Life care across the UK, with a focus on changes introduced during the COVID-19 pandemic, in respect of:
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Anticipatory prescribing at home and in care homes
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Syringe drivers at home and in care homes
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Repurposing of medicines at the end of life
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Family carer administration of end of life care medicines
Methods: Relevant stakeholders from a sample of CCG areas (or equivalent) from across the UK were identified from our previous study. Additional colleagues from across the UK were approached to participate through their professional organisations including: Association for Palliative Medicine of the United Kingdom and Ireland, Association of Supportive and Palliative Care Pharmacists, Queen’s Nursing Institute, and Hospice UK. We contacted these colleagues by email, inviting them to send us copies of policies, guidance, standard operating policies and patient information leaflets in their area concerning:
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Anticipatory prescribing at home and in care homes
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Syringe drivers at home and in care homes
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Repurposing of medicines at the end of life
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Family carer administration of end-of-life care medicines
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Other supporting documents concerning the above
Data analysis: We are in the process of developing a data extraction sheet consisting of questions based on the literature, the clinical experience of members of the research team and scoping of online national and local policies. We will conduct domain and content analysis to determine guidance gaps, then compare guidance documents between responding regions in the following areas:
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decision to prescribe,
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prescribing and dispensing,
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monitoring, storage and set-up,
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assessment and administration, and
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post-death procedures for AP at home and in care homes; syringe drivers; the repurposing of medicines at end of life; and family carer administration of end-of-life care medicines.
Funding
Abbeyfield Trust / Research Foundation
Anticipatory prescribing in end-of-life care in U.K. care homes: a qualitative interview study
Research contact
Megha Majumder, Abbeyfield Foundation PhD Student
Email: mm2426@medschl.cam.ac.uk
Twitter: @megmajumder
Project length
The proposed start date for participant recruitment is March 2021 and it is anticipated that data collection will continue until September 2021. The following timeline outlines the timeframes for the different phases of the study:
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Recruitment of care homes via care home managers in Cambridgeshire: March 2021
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Interviews with care home managers: April to July 2021
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Interviews with care home staff (nurses, practitioners, carers): May 2021 to July 2021[2]
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Data collection and concurrent data analysis (transcription, reading, initial commenting): April 2021 to August 2021
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Further data analysis (narrative analysis, phenomenological analysis) following completion of interviews: August to October 2021
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Writing and publication of journal papers: October to December 2021
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Writing of PhD dissertation and conference presentations: January to June 2022
Summary
We will be conducting a qualitative interview study with care home managers, staff members, visiting clinicians, and pharmacists in care homes across Cambridgeshire. We are interested in addressing the following questions. With regard to AP in U.K. care homes:
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For whom and by whom are AP medicines prescribed?
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How are AP medicines stored and monitored?
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For whom and by whom are AP medicines administered?
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How are AP medicines disposed of after a resident’s death?
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What are the views of care home staff and other health and social care professionals concerning these issues?
These data will be analysed through a hermeneutic phenomenological and idiographic lens, generating case-studies of the AP process in individual care homes at two levels:
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Mechanics of AP within nursing homes: how AP operates in each of the participating nursing homes. Specifically, by and for whom AMs are prescribed and administered, and how AMs are monitored and disposed of.
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Perspectives about AP within nursing homes: How AP is perceived and experienced by nursing home managers, staff, clinicians, and/or pharmacists as they negotiate their space, place, and relationships within the institution at large.
Funding
Abbeyfield Trust / Research Foundation
How do doctors communicate and make decisions about assisted hydration at the end of life?
Research contact
Dr Arjun Kingdon, Academic Clinical Fellow / Specialist Trainee in Palliative Medicine
Email: adnk2@medschl.cam.ac.uk
ORCiD: 0000-0002-2914-082X
Twitter: @adnkingdon
Project length
2019 – 2021
Summary
The topic of using assisted hydration for dying people has been the subject of controversy. Practice is variable in different settings and countries, contributed to by the limited evidence base for the impact of assisted hydration. The topic is often emotionally charged and matters to families and yet rates of important conversations about assisted hydration are low. This qualitative research study, born out of a previously published systematic review, investigates how doctors communicate and make decisions about this important topic, and theorises how improved practice may come about. Sixteen semi-structured interviews have been conducted (2019-20) with geriatricians and palliative medicine consultants. Analysis is underway; initial data suggest that communication and decision-making about assisted hydration is complex, ethically challenging, and difficult to teach.
Funding
The Academic Clinical Fellowship post is locally funded (Health Education East of England).
Outputs
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Kingdon A, Spathis A, Brodrick R, Clarke G, Kuhn I, Barclay S. What is the impact of clinically assisted hydration in the last days of life? A systematic literature review and narrative synthesis. BMJ Support Palliat Care. 2020 Oct 12: bmjspcare-2020-002600.
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Ryan R, Spathis A, Bowers B, Petrova M, Hopkins S, Morgan T, Schichtel M, Swash B, Polak L, Kingdon A, Barclay S. Anticipatory prescribing in community end of life care in the UK: a mixed-methods study of healthcare professionals’ views concerning best practice and areas in need of improvement. BMJ Support Palliat Care. 10. A37.2-A37. 10.1136/spcare-2020-PCC.102.
Supporting bereavement and complicated grief in primary care: a realist review
Research contact
Dr Caroline Pearce, Research Associate
Email: cmp89@medschl.cam.ac.uk
ORCID: 0000-0003-4653-2697
Twitter: @politicsofhap
Project length
2019 – 2021
Summary
This realist review aimed to understand what works, for whom, under what circumstances and how in identifying and managing bereaved patients experiencing complicated grief in primary care and community settings. Realist review is an interpretive, theory-driven approach to evidence synthesis that is rooted in the principles of ‘realism’, a philosophy of science. Realist reviews build causal explanations for outcomes that take the form of context-mechanism-outcome-configurations (CMOCs).
Following a systematic search evidence of the management of complicated grief in UK primary care settings was found to be limited. Therefore the search was expanded to literature on general bereavement care in primary care, resulting in a total of 42 included articles. This literature was analysed using the realist approach, developing context-mechanism-outcome configurations to understand and explain how bereavement care is managed in primary care.
The review found that primary care provision of bereavement care faced challenges in three main areas: 1) identifying when a patient has experienced a bereavement; 2) understanding patients’ expectations of a GP’s role following bereavement; and 3) communicating with and responding to grieving patients’ needs.
Funding
NIHR School for Primary Care research, Evidence Synthesis working group.
Outputs
Conference presentation: ‘Complicated grief in primary care: a realist review’, Society for Academic Primary Care, South East Conference, University of Cambridge, January 2020.
Forthcoming outputs to add once published:
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Supporting bereavement and complicated grief in primary care: a realist review (Paper currently under review)
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‘Primary care practitioners feel unprepared to manage bereaved patients experiencing complicated grief: findings from a realist review’, blog for Primary Care Unit website
‘A silent epidemic of grief’: a survey of bereavement care provision in the UK and Ireland during the COVID-19 pandemic
Research contact
Dr Caroline Pearce, Research Associate
Email: cmp89@medschl.cam.ac.uk
ORCID: 0000-0003-4653-2697
Twitter: @politicsofhap
Project length
2020 – 2021
Summary
The global COVID-19 pandemic has brought to the fore the importance of bereavement care. The scale of the impact of the COVID-19 pandemic on those bereaved is now becoming apparent: it is estimated that for every COVID death, nine people are affected by bereavement. Deaths from COVID-19 are characterised by factors that may increase the risk of complicated and prolonged grief responses including; sudden and unexpected deaths, deaths in intensive care units, patient isolation and severe symptoms including breathlessness at the end of life. Social distancing measures have had a major impact on those bereaved from all causes, not only from COVID-19. These essential measures restricted visiting in hospitals, care homes and hospices, preventing loved ones saying goodbye and leaving some to die alone. People bereaved prior to the pandemic are also affected, with social isolation and interrupted bereavement care intensifying feelings of grief.
At present, however, it is not clear what forms of support are appropriate or effective during and following pandemics. To support practitioners and policy-makers, we surveyed practitioners in the United Kingdom (UK) and Ireland concerning changes in their bereavement care practice, including the target group, mode, and content of delivery during the COVID-19 pandemic.
805 practitioners working in hospitals, hospices, care homes and community settings across the UK and Ireland responded to an online survey between 3rd August and 4th September 2020. Significant changes to bereavement care practice were reported including in the use of telephone, video and other forms of remote support; supporting people bereaved from non-COVID conditions, from COVID-19, and people bereaved before the pandemic. Free-text responses demonstrated the complexities and scale of the impact on bereaved people and on health and social services, practitioners and their relationships with bereaved families.
Funding
NIHR School for Primary Care Research
Outputs
Forthcoming outputs to add once published:
-
‘A silent epidemic of grief’: a survey of bereavement care provision in the United Kingdom and Ireland during the COVID-19 pandemic (Paper under review)
Bereavement care services effectiveness and cost-effectiveness: a systematic review
Research contact
Dr Caroline Pearce, Research Associate
Email: cmp89@medschl.cam.ac.uk
ORCID: 0000-0003-4653-2697
Twitter: @politicsofhap
Project length
2020 – 2021
Summary
A rapid systematic literature review of the clinical-effectiveness and cost-effectiveness of bereavement services, with a particular focus on bereavement during the COVID-19 pandemic was commissioned by the Department of Health and Social Care and undertaken by Public Health England and the University of Cambridge.
The primary review questions are:
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What is evidence for the effectiveness of bereavement services?
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What is evidence base for the cost-effectiveness of bereavement services?
Funding
Commissioned by Department of Health and Social Care
Public Health England
NIHR School for Primary Care Research
Outputs
-
A full report was submitted to Department of Health and Social Care in November 2020. Preparation of a journal publication is in progress.
End of Life Care in Care Homes
Research contact
Susannah Browne, St Luke’s Hospice PhD Student
Email: sb2435@medschl.cam.ac.uk
ORCiD: 0000-0003-3203-6174
Twitter: @SusannahBrowne
Project length
2020 – 2023
Summary
Currently in the scoping phase, the project will examine the rhetoric of care provision against the reality of provision from the stand point of carers and patients. The research will encompass:
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an analysis of local area and central government policy;
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a systematic review of the literature on the provision of end of life care in care homes;
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an analysis of what can count as measurable outcome and impact statements;
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an assessment of the available administrative and research data to support understanding of outcome measurement, and;
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fieldwork in care homes in the London Borough of Harrow
Funding
PhD Fellowship Grant from St Luke’s Hospice, London
Outputs
An investigation into the prevalence, impact and management of cancer-related fatigue in teenage and young adult patients
Research contact
Dr Anna Spathis, University Lecturer, Honorary Consultant in Palliative Medicine
Email: aos10@medschl.cam.ac.uk
ORCiD: 0000-0002-9837-7281
Project length
2013 – 2019
Research summary
This doctoral research incorporated a systematic review, multicentre electronic survey and multiphase Fatigue Intervention Co-design Study. This work has led to the development of a ‘trial ready’ age-appropriate fatigue intervention and a series of high impact short information videos ‘made for young people by young people’, and received two University prizes.
Funding
Funded by Macmillan Cancer Support, NIHR CLAHRC East of England, School of Primary Care Research
Outputs
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Spathis A, Booth S, Grove S, Hatcher H, Kuhn I, Barclay S. Teenage and young adult cancer-related fatigue is prevalent, distressing and neglected: it is time to intervene. A systematic literature review and narrative synthesis. Journal of Adolescent and Young Adult Oncology 2015;4(1):3-17
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Spathis A, Hatcher H, Booth S, Gibson F, Stone P, Abbas L, Barclay M, Brimicombe J, Thiemann P, McCabe M, Campsey R, Hooker L, Moss W, Robson J, Barclay S. Cancer-related fatigue in adolescents and young adults after cancer treatment: persistent and poorly managed. Journal of Adolescent and Young Adult Oncology 2017;6(3):489-493
National Survey of Palliative and End of Life Care Teaching in UK Medical Schools
Research contact
Dr Thomas Weetman, NIHR Academic Clinical Fellow in Medical Education and Palliative Medicine
Email: tw545@medschl.cam.ac.uk
Project length
2020-2021
Summary
This is the fifth iteration of a survey first undertaken in 1983, which has been repeated every ten years or so. It asks the Leads for Palliative Care teaching at each UK-based medical school a number of questions regarding how Palliative Care teaching fits into the curriculum as well as how learning is coordinated, facilitated and assessed. The current survey will also inquire into the effect that the COVID-19 pandemic has had on teaching Palliative Care, with the aim of seeing what might be learnt from this challenging time, particularly in regard to virtual learning and telecommunications.
The survey is soon to be underway.
Funding
No additional funding