Abstract
Belfast, Northern Ireland
16 and 17 November 2023
Scientific Committee
Abstract ID: 1
Developing an evidence and theory based multimodal integrative intervention for the management of renal cachexia: a theory of change
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Carolyn Blair1*, Adrian Slee2, Andrew Davenport3, Denis Fouque4, Joanne Reid5
1Queen’s University Belfast, 2University College London, 3University College London, 4Hôpital Lyon Sud and University of Lyon, 5Queen’s University Belfast
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 19
Palliative care education and training interventions for healthcare professionals caring for people with dementia: A scoping review
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
William Hutch*, Trish O’Sullivan, Aisling Jennings, Tony Foley
University College Cork
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 22
How willing are people to help their neighbours in need of support? A cross-sectional survey among the general public
Topics: Community based approaches to palliative care
Bert, Quintiens1*, Smets Tinne1, Kenneth Chambaere2, Lieve Van den Block1, Luc Deliens1, Joachim Cohen1
1Vrije Universiteit Brussel, 2Ghent University
*Correspondence should be addressed to:
N/A
This research is part of the programme ‘CAPACITY: Flanders Programme to Develop Capacity in Palliative Care Across Society’, a collaboration between the Vrije Universiteit Brussel, Ghent University and the Catholic University Leuven, Belgium. This study is supported by a grant from the Research Foundation – Flanders, file number S002219N.
None
Abstract ID: 27
Exploring Energy Hardship in Palliative Care at Home: The Nurse Perspective
Topic: The rights of patients and family carers
Dr Suzanne Denieffe1*, Martina Gooney1, Pilar Rodrigues1, Muireann Prendergast1, Patricia Hunt1, Mary Nevin2, Peter May3, Emer Brangan4, Mary Rabbitte4
1South East Technological University, 2Dublin City University, 3Kings College London, 4All Ireland Institute of Hospice and Palliative Care
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 28
The recognition, assessment & perceptions of total pain in people with profound intellectual disabilities - A mixed methods systematic review
Topic: Palliative care and underserved populations
Maeve Goodall*1, Kate Irving1, Mary Nevin1, Amanda Drury1, Tanya McCance2
1Dublin City University, 2University College Dublin
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 31
Mixed-methods evaluation of a face-to-face educational intervention for health and social care professionals to deliver family-centred cancer supportive care when a parent with dependent children is at end of life
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Cherith J Semple*1&2, Lisa Strutt3, Jeffrey Hanna1
1Ulster University, 2South Eastern Health & Social Care Trust 3Fellow, Institute of Coaching, Harvard McLean Medical School
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 42
Pride In Death: Hosting an LGBTQIA+ focused death cafe
Topic: Palliative care and underserved populations
Paula Pinto*1, James O’Hagan2, Valerie Smith3
1All Ireland Institute of Hospice and Palliative Care, 2LGBT Ireland, 3Irish Hospice Foundation
*Correspondence should be addressed to:
However, fear that asserting their identity will lead to discrimination or neglect creates an additional barrier for LGBTQIA+ People.
LGBTQIA+ people suffer from ambiguous and complicated grief due to a variety of issues specific to being LGBTQIA+ and the creation of specific Bereavement Support Groups is essential.
The desire for younger and older LGBTQIA+ people to connect with one another is reciprocal, but there are few (if any) places to connect across generations. Creating safe spaces for intergenerational networks to be developed is important.
Need for LGBTQIA+ End of Life Reference Group that collaborates with people writing and designing health resources for end of life care.
Creative engagement and communication outside religious rituals is required to ensure LGBTQIA+ People’s identities as well as their chosen families, are respected and acknowledged until the very end.
LGBTQIA+ Nursing Homes. Fear of discrimination and having to go ‘back in the closet’ urges the need for a LGBTQIA+ only nursing home.
Host more LGBTQIA+ Death Cafes.
N/A
None
None
Abstract ID: 45
Cost consequences of unscheduled emergency admissions in cancer patients in the last year of life
Seminar topic: Public Health Palliative Care
Ethna McFerran1*, Victoria Cairnduff1, Ray Elder2, Anna Gavin3, Mark Lawler1
1Queen’s University Belfast, 2South Eastern Health and Social Care Trust, 3Northern Ireland Cancer Registry
*Correspondence should be addressed to:
Lung cancer patients had the highest proportion of admissions (23.2%, mean length-of-stay = 17.9 days, mean cost=£7,224). The highest service use and total cost was in those diagnosed at Stage IV (38.4%), which required 22,099 days of care, costing £9,629,014. Palliative care support, identified in 25.5% of patients, contributed £1,322,328. A 3-day reduction in mean length-of-stay with a 10% reduction in admissions, could reduce costs by £7.37 million. Regression analyses explained 41% of length-of-stay variability.
N/A
This research was conducted using data from the Northern Ireland Cancer Registry (NICR) which is funded by the Public Health Agency of NI (VC, AG). The primary author (EMF) was funded by grants from Cancer Focus Northern Ireland and Health Data Research UK. VC was funded through the Macmillan-NI Cancer Registry Partnership (2016). ML acknowledges grant funding from his roles as Associate Director of Health Data Research Wales-Northern Ireland and Scientific Director for DATA-CAN, The Health Data Research Hub for Cancer. The interpretation and conclusions of the data are the sole responsibility of the authors.
ML declares honoraria from Bayer, Carnall Farrar, EMD Serono, Novartis, Pfizer, and Roche unrelated to this work.
Abstract ID: 51
Empathy in every action - mastering post death care and empowering staff with a comprehensive care after death check list -
Seminar topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Rebecca Lloyd*, Fiona Kelly, Sabrina Mullahy
HSE
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 52
Psychometric validation of the Death Literacy Index and benchmarking of levels of death literacy in the UK
Seminar topic: Death and grief literacy
Lisa Graham-Wisener1*, Paul Toner1, Rosemary Leonard2, Jenny Groarke3
1Queen’s University Belfast, 2Western Sydney University, 3National University Ireland, Galway
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 56
Building death and grief literacy in a coastal town: Good Grief Weston festival
Seminar topic: Death and grief literacy
Lucy E. Selman1,2*, James Robb1,2, Alice Malpass1,2, Olly Clabburn1,2, Alison Bamford1,2, Rachel Hare2, Lesel Dawson2, Fiona Matthews3, Karen Lee4, Lin Toulcher4, Polly Maxwell4, Nina Thomas-Bennett4
1Palliative and End of Life Care Research Group, 2University of Bristol, 3Super Culture, 4Weston-super-Mare Community Network for Health Inequities
*Correspondence should be addressed to:
Online and paper surveys assessing participants’ characteristics and experiences were administrated during and after the festival. Survey participants who indicated their willingness to participate were invited to attend a focus group. Focus groups were recorded, transcribed and analysed using thematic analysis. Data were collected by trained community co-researchers.
N/A
Arts and Humanities Research Council
None
Abstract ID: 58
The Financial Impact of Bereavement in Ireland
Seminar topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Avril Easton*1, Amanda Roberts1, Orla Keegan1, Caroline Dalton2
1Irish Hospice Foundation, 2University College Cork
*Correspondence should be addressed to:
The costs of bereavement are multidimensional, multifactorial and intertwined. For some the impacts are temporary, for others they are significant impacting on their ability and capacity to continue with daily life.
This is the first study in Ireland examining the financial impact of bereavement, from funeral costs to longer-term impacts on health, employment and a person’s wellbeing.
Assess knowledge, attitudes, behaviour and experience of the Irish public around economic aspects of bereavement
Describe the economic impact of bereavement on a variety of cohorts, including those who have been bereaved and those providing services to support the bereaved
Identify policy and practice implications for supporting people who are bereaved
A survey of a representative sample of 1,000 adults in Ireland was used to assess knowledge, attitudes, behaviour and experience of the financial impact of bereavement. Interviews were conducted with bereaved people (n = 7) and focus group discussions held with professionals and service providers (n = 24).
N/A
None
None
Abstract ID: 60
Compassionate Communities: How do we know we are making a difference?
Seminar topic: Compassionate Communities
Guy Peryer*
NIHR Applied Research Collaboration - East of England
*Correspondence should be addressed to:
Using community-based participatory research principles, citizens were invited to join a CoP, with knowledge mobilisation support from an academic researcher. The CoP used an asset-based approach to activate participatory action learning through enacting elements of the Compassionate Communities Charter.
CoP members first performed a collaborative context analysis to identify the risks and assumptions surrounding the planned community organising intervention co-led by externally commissioned outcome evaluation specialists.
The context analysis output formed the basis of a co-designed outcome map using programme theory that considered six themes: i) co-produced activities that aligned with the Charter, ii) tracking stakeholder networks involved, iii) how CoP members responded to being involved, iv) what knowledge and skills they gained, v) what changes occurred to their behaviour, and vi) what difference they believed the CoP had instigated overall.
N/A
Local NHS Clinical Commissioning Group
None
Abstract ID: 63
Developing Compassionate Workplaces to protect employees’ health and wellbeing: presentation of the international EU-CoWork project
Seminar topic: Compassionate Communities
Steven Vanderstichelen1,2,3*, Deborah De Moortel1,4, Joachim Cohen1,2, EU-CoWork Consortium* (*The EU-CoWork Consortium is Joachim Cohen, Steven Vanderstichelen, Deborah De Moortel, Sarah Dury, Sara De Gieter, Marijke Dheedene, Filip Van Droogenbroeck, Libby Sallnow, Karina Nielsen, Ulla Kriebernegg, Patrick Schuchter, Klaus Wegleitner, Anna-Christina Kainradl, Daniela Martos, Ilona Wenger, Carol Tishelman, Anna Jansson, Malin Eneslätt, Tiziana Sardiello, Lena Abrahamsson, Ellen Delvaux, Sofie Vandenbroeck, Phoebe Smith, Jennifer Webster, Areti Gkypali, Leda Panayotopoulou, Eirini Nikandrou)
1Vrije Universiteit Brussel (VUB), Compassionate Communities Centre of Expertise (COCO), Brussels, Belgium, 2Vrije Universiteit Brussel (VUB), End-of-life Care Research Group, Brussels, Belgium, 3Ghent University, End-of-Life Care Research Group, Ghent, Belgium, 4Interface Demography, Vrije Universiteit Brussel (VUB), Brussels, Belgium
*Correspondence should be addressed to:
N/A
None
None
Abstract ID: 64
Looking forward: exploring the priorities for public health palliative care research in Europe in the coming decade
Seminar topic: Public Health Palliative Care
Steven Vanderstichelen1,2,3,4*, Carol Tishelman2,4,5, Agnes van der Heide4,6, Sonja McIlfatrick4,7, Libby Sallnow2,4,8, Luc Deliens1,2,3,4, Joachim Cohen1,2,4
1Vrije Universiteit Brussel (VUB), Compassionate Communities Centre of Expertise (COCO), Brussels, Belgium 2Vrije Universiteit Brussel (VUB), End-of-life Care Research Group, Brussels, Belgium 3Ghent University, End-of-Life Care Research Group, Ghent, Belgium 4EAPC Reference Group on Public Health and Palliative Care 5Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Solna, Sweden 6Department of Public Health, Erasmus MC, University Medical Center Rotterdam, the Netherlands 7Institute of Nursing and Health Research, School of Nursing, Ulster University, Belfast, Northern Ireland 8St Christopher’s Hospice, London, UK
*Correspondence should be addressed to:
Snowball sampling was used to recruit people with relevant expertise in PHPC from an initial list of 80 experts from 16 countries. Experts were asked to rank a list of 62 potential research priorities (derived from earlier Open Meeting discussions) on 5-point Likert scales for appropriateness, relevance, feasibility and impact. Research Priority Scores (RPS) were calculated as mean item scores across criteria and raters. Average Expert Agreement (AEA) was calculated as mean proportion of raters who scored the mode result on each criterion per item.
N/A
None
None
Abstract ID: 65
Development of a Theory of Change for the evaluation of evidence-based, practice- and citizen-informed palliative care policy in Flanders
Seminar topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Steven Vanderstichelen1,2*, Marijke Dheeden1,2, Anneleen Craps3, Joachim Cohen1,2, Lieve Van den Block1, Kenneth Chambaere1
1End-of-Life Care Research Group, Universiteit Gent & Vrije Universiteit Brussel (VUB), Ghent, Belgium, 2Compassionate Communities Centre of Expertise, Vrije Universiteit Brussel (VUB), Brussels, Belgium, 3Departement of Care, Flanders, Belgium
*Correspondence should be addressed to:
Through participatory observation at stakeholder meetings, and document analysis, we establish a Theory of Change (ToC) that tells us which actions will lead to which outcomes, why, and how to monitor the intended changes to evaluate policy.
N/A
None
None
Abstract ID: 66
Dying Well at Home; Planning for equity, choice and dignity in end-of -life care
Topic: The rights of patients and family carers
Marese Damery*, Nicole Forster, Siobhan Murphy
Irish Hospice Foundation
*Correspondence should be addressed to:
What constitutes a good death?
What factors facilitate patients to have a good death at home in Ireland?
What factors prevent someone from dying at home in Ireland?
How has the Covid-19 pandemic affected end-of-life care at home in Ireland?
Online focus group discussions were held with 49 participants from 15 organisations. Discussions were recorded with consent. Thematic analysis was used to code responses into common themes and subthemes.
Factors which facilitated good end-of-life care at home were families being informed; access to specialist palliative services; continuity and coordination of care across medical providers; timely access for pain management.
Barriers to dying well at home were lack of coordination between medical teams, incomplete information about end-of-life care, lack of 24-hour support, unequal access to palliative care services, under-resourced medical teams, and lack of integration with social services.
N/A
Pobal
None
Abstract ID: 68
Role of caregiving burden and contact with palliative care in use of formal bereavement support: secondary analysis of a population-based study
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Maja Furlan1*, Lucy Selman2, Natalia Calanzani3,4, Irene J Higginson5,6,7, Barbara Gomes1
1University of Coimbra, 2University of Bristol, 3Institute of Applied Health Sciences, 4University of Aberdeen, 5Cicely Saunders Institute of Palliative Care, 6Policy and Rehabilitation, 7King’s College Londo
*Correspondence should be addressed to:
The population presented bereaved relatives of adults who died of cancer (London, UK) from four health districts in London who registered the death of an adult due between March 2009 and March 2010. We ran a multivariate logistic regression to determine the extent the independent variables explain the utilisation of BS.
N/A
Calouste Gulbenkian Foundation, Foundation for Science and Technology Portugal
None
Abstract ID: 69
Brilliant palliative care: Partnering with culturally diverse communities using participatory visual methods
Seminar topic: Palliative care and underserved populations
Aileen Collier1,2*, Ann Dadich3, Isaac Zangre4, Kamal Dahal4, Dalia Albrazi4, Catherine Jeffs5, Gregory Crawford5,6
1Research Centre for Palliative Care Death and Dying, 2Flinders University and Northern Adelaide Local Health Network, 3Western Sydney University, 4Community Leader, 5Northern Adelaide Local Health Network, 6University of Adelaide
*Correspondence should be addressed to:
The study involved reflexive discussions with leaders of culturally and linguistically diverse communities. The focus of these discussions was video footage of palliative care in acute services, particularly that which clinicians, patients, and carers (who were not part of the aforesaid communities) deemed to be brilliant.
N/A
None
None
Abstract ID: 72
Using routine data to understand inequity in palliative, end-of-life and bereavement care: A cross-sector project in a coastal community
Seminar topic: Public Health Palliative Care
Lucy Selman1,2*, Charlotte Chamberlain1,2, Donna Davies3, Lucy Pocock1,2, John Bailey4, Andre Le Poidevin5, Julia Verne6, John Macleod, Nicola O’Driscoll3
1Palliative and End of Life Care Research Group, 2University of Bristol, 3North Somerset Council, 4Weston Hospicecare, 5RCGP Severn Faculty, 6Office for Health Improvement and Disparities, 6Department of Health and Social Care, 7ARC West and University of Bristol
*Correspondence should be addressed to:
(1) Investigate inequities in PEoLC or bereavement support using existing data in a coastal region (North Somerset, England)
(2) Use a collaborative approach to create a local digital dashboard on this topic.
An epidemiologic approach investigated the impact of protected characteristics on PEoLC and bereavement support. Data resources included the Joint Strategic Needs Assessment, census data (2021), ONS death registrations, English indices of deprivation, Department of Work and Pension, school attendance and employment data, hospice data.
(1) There were 11.1 deaths per 1,000 population (2019-2020), with a correlation between increasing deprivation and mortality (per 1,000, most deprived 15.2 deaths vs. least deprived 7.7 deaths), equating to a 7.8-year age gap for men between the least and most deprived quintiles (women 6.4 years ). Routine health and social care data provided a limited understanding of access to and experience of PEoLC and bereavement services, primarily due to poor recording of recognised PEoLC need and little identification of bereavement. Other barriers included fragmented care home data and a lack of integrated hospice data.
(2) An open-access dashboard was created, available on the Council website (n-somerset.gov.uk).
N/A
Arts and Humanities Research Council/ UK Research and Innovation (UKRI)
None
Abstract ID: 73
Caregiving experiences in the last year are associated with neighbourhood participation regarding serious illness, death and loss: A cross-sectional survey study
Topic: Compassionate Communities
Louise D’Eer1,2*, Kenneth Chambaere1,2, Luc Deliens1,2, Joachim Cohen1,2, Tinne Smets1,2
1End-of-Life Care Research Group, 2Vrije Universiteit Brussel
*Correspondence should be addressed to:
We sent a questionnaire between February and April 2021 to a random sample of 2,324 citizens aged 18+ years. We performed linear regression analyses to study the associations between experiences with serious illness, death and loss in the last year, believed capacities, skills and self-efficacy developed such previous experiences and neighbourhood participation regarding serious illness, death and loss.
N/A
Research Foundation Flanders, file number S002219N.
None
Abstract ID: 82
Reflecting on Bereavement during Covid-19: using survey data from Ireland to examine public health implications
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Orla Keegan1,2*, Avril Easton1, Elizabeth Weathers3, Helen Coughlan4
1Irish Hospice Foundation, 2Royal College of Surgeons in Ireland, 3ECNE Research, 4St. Vincent’s University Hospital
*Correspondence should be addressed to:
Review bereavement Covid-19 with respect to a public health model
A survey of 38 questions including the Brief Grief Questionnaire5 to screen for Prolonged Grief Disorder (PGD) was disseminated using purposive, non-probability-based sampling. Descriptive and inferential statistics were generated. Open-ended data were analyzed thematically.6
N/A
Irish Hospice Foundation and Research Ethical approval from RCSI
None
Tang, S., Yu, Y., Chen, Q., Fan, M., & Eisma, M. C. (2021). Correlates of Mental Health After COVID-19 Bereavement in Mainland China. Journal of pain and symptom management, 61(6), e1–e4. https://doi.org/10.1016/j.jpainsymman.2021.02.016
Selman, L. E., Farnell, D. J. J., Longo, M., Goss, S., Torrens-Burton, A., Seddon, K., Mayland, C. R., Machin, L., Byrne, A., & Harrop, E. J. (2022). Factors Associated With Higher Levels of Grief and Support Needs Among People Bereaved During the Pandemic: Results from a National Online Survey. Omega, 302228221144925. https://doi.org/10.1177/00302228221144925
Edwards, A., Do, D., & Dao, T. (2023). Effects of the COVID-19 Pandemic on Grief: A Prospective Survey Among Community Hospital Next-of-Kin. Journal of Palliative Medicine, 26(5), 653–661. https://doi.org/10.1089/jpm.2022.0218
Aoun, S. M., Breen, L. J., O’Connor, M., Rumbold, B., & Nordstrom, C. (2012). A public health approach to bereavement support services in palliative care. Australian and New Zealand journal of public health, 36(1), 14–16. https://doi.org/10.1111/j.1753-6405.2012.00825.x
Shear, K. M., Jackson, C. T., Essock, S. M., Donahue, S. A., & Felton, C. J. (2006). Brief Grief Questionnaire [Database record]. APA PsycTests. https://doi.org/10.1037/t62516-000
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Abstract ID: 104
Frequency and trends in deaths at nursing homes in older people: population-level study using death-certificate data in 18 countries
Topic: Public Health Palliative Care
Sílvia Lopes1,2,3,4,5,6*, Andrea Bruno de Sousa1, Mayra Delalibera1, Joachim Cohen7, Barbara Gomes1,8,9
1University of Coimbra, 2Faculty of Medicine & NOVA National School of Public Health, 3Public Health Research Centre, 4Comprehensive Health Research Center, 5CHRC, 6NOVA University Lisbon, 7Vrije Universiteit Brussel, 8Cicely Saunders Institute of Palliative Care, 9King’s College London
*Correspondence should be addressed to:
N/A
European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation programme (grant agreement No 948609). This reflects only the authors’ view and the funder is not responsible for any use that may be made of the information it contains.
None
Abstract ID: 2
Exploring the lived experience of cachexia for individuals with end-stage kidney disease and the interrelated experience of their carers
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Carolyn Blair1, Adrian Slee2, Andrew Davenport2, Denis Fouque3, Joanne Reid1
1Queen’s University Belfast, 2University College London, 3Hôpital Lyon Sud and University of Lyon
*Correspondence should be addressed to:
N/A
Abstract ID: 3
Examining the acCeptability and feasibility of the COmpasionates Mindful ReSilience (CMR) prograMme in Adult PatIents with Chronic kidney disease: The COSMIC Study findings
Topic: Compassionate Communities
Anna Wilson1*, Claire Carswell1, Clare McKeaveney2, Karen Atkinson2, Helen Noble1
1Queen’s University Belfast, 2MindfulnessUK
*Correspondence should be addressed to:
Thematic analysis of participant interviews (n = 19) and the Mindfulness Teacher (n = 1) identified three themes (and nine-subthemes); experiences of the CMR programme that facilitated subjective benefit, participants lived and shared experiences, and practicalities of CMR programme participation. All participants interviewed reported that they found participating in the CMR programme to be beneficial.
N/A
N/A
None
Abstract ID: 4
Roles and responsibilities of the community palliative care key worker
Topic: Community based approaches to palliative care
Maria Betts1,2*, Felicity Hasson2, Christine Shannon2, Anne Fee2
1Northern Health and Social Care Trust, 2University of Ulster
*Correspondence should be addressed to:
Although participants in selected studies understood the importance of care coordination in palliative home care, issues around communication and training, and uncertainty around the key worker role appeared to be barriers to implementation.
Implementation of the key worker role was inconsistent, signifying a lack of standardisation and adherence to policy guidelines. Those allocated the role did not see a difference in their existing role, nor did it impact the time spent with patients, but it did result in additional paperwork.
N/A
Abstract ID: 5
How shared decision-making, via the Professionally-Driven Zone of Patient or Surrogate Discretion, can improve palliative care and decrease decisional conflict
Topic: Public Health Palliative Care
Joshua T. Landry*
Southlake Regional Health Centre (Ontario, Canada)
*Correspondence to be addressed to:
N/A
N/A
None
Abstract ID: 6
Community Palliative Care Patients Experience of EMPOWER: an Occupational Therapy (OT) self-management anxiety group programme
Topic: Health promotion and palliative care
Lauren Boland1*, Sarah Delaney1, Julie Donohoe1, Niamh Donnelly1, Deirdre Connolly2
1St Francis Hospice Dublin, 2Trinity College Dublin
*Correspondence to be addressed to:
1) Living with Symptoms,
2) Management of Symptoms,
3) Programme Design and Delivery.
N/A
N/A
None
Abstract ID: 7
International maPping exercise of Arts Interventions in reNal uniTs: the PAINT project
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Trisha Forbes
Queen’s University Belfast
*Correspondence should be addressed to:
Co-Author Name (First name, Surname), Email and Affiliation., Helen Noble,
Co-Author Name (First name, Surname), Email and Affiliation, Anna Wilson,
Co-Author Name (First name, Surname), Email and Affiliation2, Clare McKeaveney,
Co-Author Name (First name, Surname), Email and Affiliation3, Claire Carswell,
N/A
N/A
None
Abstract ID: 9
The development of a bereavement competency framework for Level 2 service providers
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Amanda Roberts1, Orla Keegan1, Aisling Lavelle1, Sharon Lambert2, Liz Weather3
1Irish Hospice Foundation, 2University College Cork, 3ECNE Research
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 11
The support needs experienced by patients requesting medical aid in dying and their relatives: a qualitative study using semi-structured interviews and written narratives
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Stijn Vissers1,2*, Joni Gilissen1,2, Joachim Cohen1, 2, Luc Deliens 1,2, Freddy Mortier2,3, Kenneth Chambaere1,2, Sigrid Dierickx1,2
1Vrije Universiteit Brussel (VUB) & Universiteit Gent, End-of-Life Care Research Group, Laarbeeklaan 103, 1090 Brussels, Belgium, 2Universiteit Gent, Department of Public Health and Primary Care, C. Heymanslaan 10, 9000 Ghent, Belgium, 3Universiteit Gent, Bioethics Institute Ghent, Blandijnberg
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 12
Successful use of dexmedetomidine to allow cooperative sedation and facilitate transformation
Topic: Collaborations between professional and non-professional caregivers
Dr. Wilhelm Freiherr von Hornstein*, Dr Ayomide Badun, Maureen Wilson
Specialist Palliative Care Service Cavan & Monaghan
*Correspondence should be addressed to:
He was a very successful businessman, married and father of 8 children.
When his respiratory distress increased we started a continuous subcutaneous infusion over 24 hours (CSCI) with alfentanil 2 mg, olanzapine 5 mg and clonidine 75 µg, clonidine increased after 3 days 150 µg. His respiratory symptoms responded well, but his panic attacks escalated. We switched clonidine 150 µg to dexmedetomidine 400 µg CSCI. The dexmedetomidine dose of 0.4 µg/kg/h deescalated the panic attacks.
Initially on classical medication he rejected any conversation about the seriousness of his disease. After switching medication suddenly he engaged openly with his family and staff about his dying. His family observed when on classical medication (Fentanyl, haloperidol, midazolam, phenobarbital) he showed a paradoxical increase of his agitation. They noted he had a controlling personality and would not tolerate when his wishes would not be respected.
N/A
N/A
None
Abstract ID: 13
Is pre-bereavement collaboration between family caregivers and healthcare professionals associated with post-bereavement emotional well-being? A population-based survey
Topic: Collaborations between professional and non-professional caregivers
Orphé Matthys1*, Sigrid Dierickx1, Luc Deliens1, Aline de Vleminck2, Joachim Cohen2
1Ghent University, 2Vrije Universiteit Brussel
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 14
The Bereavement Charter Mark for Employers – a pilot in Inverclyde
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Rebecca Patterson1*, Jennifer Somerville2, Alison Bunce3
1Scottish Partnership for Palliative Care, 2Children’s Hospices Across Scotland, 3Inverclyde Cares
*Correspondence should be addressed to:
It was developed alongside a suite of complementary resources designed to support employers, managers and colleagues create more bereavement-friendly workplaces, including the Scottish Bereavement-Friendly Workplaces Toolkit and Employer’s Guide to the Bereavement Charter.
local bereavement charter
bereavement policy
‘safe space’
condolence and back to work form
staff bereavement training
bereavement educational film shown to all staff
These five organisations were the first in Scotland to be awarded the Bereavement Charter Mark for Employers.
N/A
N/A
None
Abstract ID: 15
Bespoke Collaboration of Palliative Care for children with open access to support at home and in hospital
Topic: Collaborations between professional and non-professional caregivers
Dr Wilhelm Freiherr von Hornstein1*, Dr Ayomide Badun1, Ann Leahy2, Una MacAree2, Maureen Wilson2
1Specialist Palliative Care Service Cavan & Monaghan, 2Cavan General Hospital
*Correspondence should be addressed to:
The families’ wishes were to maintain normal life as much as possible.
The 5 years old girl had rapidly increasing pain and worsening seizures. She availed of 40 direct access visits, 11 overnight admissions for IV medication and respite. For her last 5 days she required hospitalization for symptom management at her request.
An open access plan to the paediatric facility allowed bespoke care for both families. They were effectively supported for 183 / 95 days.
N/A
N/A
None
Abstract ID: 16
Healthcare Professionals’ experience of providing care for people with motor neurone disease (MND) and their family caregivers: A scoping literature review
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Megan Walls*1, Austin Claffey2, Miriam Galvin1
1Trinity College Dublin, 2London South Bank Univeristy
*Correspondence should be addressed to:
Design, Scoping literature review.
Themes relate to the extraordinary care required by patients and families living with MND, legal, moral and ethical dilemmas and decisions that require individualised and bespoke communication, the necessity for interdisciplinary collaboration, multidisciplinary team-working and professionals’ vulnerability when working alone, satisfaction in having a ‘meaningful job’, organisational barriers and the emotional impact of feeling overwhelmed, physically and emotionally exhausted and powerless.
N/A
N/A
None
Abstract ID: 17
Getxo ZUrekin : Building the narrative of a Compassionate Community
Topic: Compassionate Communities
Naomi Hasson1*, Maider Grajales1, Itzier Grajales1, Itziar Moreno2, Gorka Espiau Idoyaga2
1Fundacion Doble Sonrisa, 2Agire Lehendakaria Center
*Correspondence should be addressed to:
The listening platform has allowed us to build a shared vision and a narrative of change influencing in public policies and understanding strengths, challenges, and priorities as well as to set up specific priorities and actions in the community.
N/A
N/A
None
Abstract ID: 18
Who is more death literate – bus drivers or students? A pilot of the Death Literacy Index in Scotland
Topic: Death and grief literacy
Rebecca Patterson, Mark Hazelwood
Scottish Partnership for Palliative Care
*Correspondence should be addressed to:
Originally developed in Australia, the Death Literacy Index (DLI) is designed to measure death literacy within populations with hopes that it can help inform targeting of future interventions to address gaps in death literacy, measure the impact of interventions, and make comparisons across different communities.
University students and bus drivers were emailed inviting them to participate in the survey in return for an Amazon voucher.
People who have experienced grief or other significant life events often feel more prepared to cope with, and help others through, similar events in the future.
Some people feel very able to have conversations with others about death and bereavement, while others feel unable to talk about these issues – there’s no ‘typical’ level of comfort in talking about death.
While most people know what a ‘will’ is, there’s a general lack of awareness of other ways that people can plan ahead and get support with death, dying and bereavement.
N/A
N/A
None
Abstract ID: 20
Family Caregivers’ Lived Experiences of Transitioning during End-of-Life Care
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Brid McCarthy*, Fiona Timmins, Michael Connolly
University College Dublin
*Correspondence should be addressed to:
To determine the various roles of family caregivers during transitioning. To identify phases of transitioning that family caregivers experience during this time. To understand the meaning of being in transition and to provide knowledge of this experience. To investigate any issues that arise during transitioning for family caregivers. To identify any factors that enable family caregivers as they transition.
N/A
N/A
None
Abstract ID: 21
Truacanta: A Scottish Compassionate Communities Project
Topic: Compassionate Communities
Rebecca Patterson*, Caroline Gibb, Mark Hazelwood
Scottish Partnership for Palliative Care
*Correspondence should be addressed to:
The project brings important learning for those interested in the use of community development approaches within a public health approach to palliative care. Communities are integral to improving people’s experiences of death, dying, loss and care. However, communities themselves have limited capacity and interest, so the complementary supportive role (and potential financial input) of third sector, statutory and private sector remains integral to achieving improvements.
N/A
N/A
None
Oral presentation
Abstract ID: 23
The co-design of an advance care planning education resource- ensuring a human rights-based approach
Seminar topic: that abstract is being submitted to: Community based approaches to palliative care
Roisin, O’Neill1*, Olivia Jamison1, Nancy Preston2, Alice Coffey3, Julie Doherty1, Owen Doody3, Anne Finucane4, Julie Green5, Karen Harrison Dening6, Gary Mitchell1, Kevin Brazil1
1School of Nursing and Midwifery, Queen’s University Belfast, County Antrim, BT9 7BL, Northern Ireland, UK, 2Department of Health Research, Lancaster University, Lancaster, LA1 4YG, England, UK, 3Department of Nursing Studies and Midwifery, University of Limerick, County Limerick, Ireland, 4School of Health and Social Science, University of Edinburgh, Edinburgh, EH8 9AG, Scotland, UK, 5School of Nursing and Midwifery, Keele University, Staffordshire, ST5 5BG, England, UK, 6School of Nursing and Midwifery De Montford University, Leicester, LE1 9BH, England, UK
*Correspondence should be addressed to:
A Human Rights-Based Approach (HRBA) to ACP should emphasise a person-centred approach, informed decision making (based on patients’ core values), and equity of access to the process. Implementation of a HRBA should consider the ‘rights holders’ (patients and their ability to exercise their rights) and ‘duty holders’ (health care professionals and their responsibilities). Patient and public involvement (PPI) provides the opportunity to ensure the opinions of both are considered and thus the rights of those involved in the process.
N/A
N/A
None
Abstract ID: 24
Online forums support palliative and bereavement care: machine learning and natural language processing analysis of qualitative data from the internet
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Shaun Peter Qureshi*1,2, Ellen Judson3,4, Amy Gadoud5,6, Karen Sanders2, Maggie Doherty2
1Centre for the Art of Dying Well, 2St Mary’s University Twickenham, 3Head of CASM, 4Demos, 5Lancaster University, 6Trinity Hospice
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 25
Examining a human-rights based approach in the development and implementation of The National End of Life Survey
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Donnacha O’Ceallaigh*, Ellie Marley, Daniela Rohde, Grace Owens, Tracy OCarroll
Health Information and Quality Authority
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 26
Patient Support Programme – An Experience in a Tertiary Cancer Centre in North East India
Topic: Community based approaches to palliative care
Kabindra Bhagabati*, Uttam Changmai, Samujjhal Bharadwaj, Gopinath Nagar, Dipankar Das, Astha Baruah
Dr Bhubaneswar Borooah Cancer Institute
*Correspondence should be addressed to:
N/A
Abstract ID: 29
Transforming Palliative Care in Colombia through a comprehensive patient-centered strategy using an individualized Holistic Needs Assessment Tool
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Joanne Reid1*, Gillian Prue1, Sam H Ahmedzai2, Jose A Calvache3, Tracy McConnell1,4
1Queen’s University Belfast, 2The University of Sheffield, 3Universidad del Cauca Carrera, 4Marie Curie
*Correspondence should be addressed to:
N/A
Abstract ID: 30
A systematic review of educational interventions to equip health and social care professionals to promote end of life supportive care when a parent with dependent children is dying with cancer
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Cherith J Semple1,2*, Sarah Sheehan3, Jeff Hanna4
1Ulster University, 2South Eastern Health & Social Care Trust, 3University College Dublin, 4Ulster University
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 32
“One chance” - SWAN End of Life (EoL) and Bereavement Care model
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Fiona Murphy1*, Sarah Dury2, Kenneth Chambaere2,3
1Liverpool Royal Foundation Trust, 2Vrije Universiteit Brussel, 3Ghent Universitsy
*Correspondence should be addressed to:
It is flexible, evolves to meet need and offers an inclusive approach working with different professionals and staff groups across organisations, promoting networking and best practice.
N/A
N/A
None
Abstract ID: 36
The right to refuse: Awareness of Advanced Directives in a cohort of patients with cancer
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Aoife Doolan1,2*, Maggie Louise O’Connor1,2, Michelle Colfer1,2, Maitiu Breathnach3,4,5, Oscar Breathnach1,2
1Beaumont RCSI Cancer Centre, 2Beaumont Hospital, 3Sutherland School of Law, 4National University of Ireland, 5University College Dublin
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 38
EMpowering Physiotherapy for Oncology With Exercise and Rehabilitation in people with metastatic breast cancer (EMPOWER-Breast), a physiotherapy-led service in a primary care setting. A Qualitative study with physiotherapists and people with metastatic breast cancer
Topic: Palliative care and underserved populations
Joyce MCV O’ Riordan1, Ruth McCullagh2, Grainne Sheill3, Frances Horgan1, Helen P. French1
1Royal College of Surgeons in Ireland, 2University College Cork, 3Trinity St. James’s Cancer Institute
*Correspondence should be addressed to:
N/A
Funding Support
Joyce MCV O’ Riordan is supported by a scholarship from the Government of Ireland Irish Research Council EBPPG/2021/98
None
Abstract ID: 41
Bereavement Support and Grief Education in Schools: A Child Rights Obligation
Topic: Bereavement - End-of-Life care and bereavement care policies; public health interventions; bereavement literacy
Christine Irvine*1, Katarzyna A. Patynowska1, Susannah Baines1, Joan McEwan1, Tracey McConnell1,2
1Marie Curie, 2Queen’s University Belfast, UK
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 44
Experiences of Healthcare Providers and Bereaved Next of Kin Relating to the Provision of Palliative Care in Adult Intensive Care Units in Saudi Arabia
Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Hamad Alshahrani1, Kevin Gormley2, Joanne Reid1
1Queen’s University Belfast, 2Mohammed Bin Rashid University of Medicine and Health Sciences, Dubai, UAE
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 50
Bereaved Caregivers’ Experiences of End of Life Care For People With Advanced Heart Failure: A Narrative Synthesis
Seminar Topic: Engaging and working with patients, informal caregivers and citizens to shape palliative and end of life care, caregiving and bereavement
Melanie Diggle*, Sue Schutz, Dan Butcher
Oxford Brookes University, UK
*Correspondence should be addressed to:
N/A
N/A
None
Abstract ID: 78
’Living Matters Now’: Improving transitional care for young people with complex and life-limiting conditions
Seminar Topic: Palliative care and underserved populations
Anita Hayes1*, Susanna Shouls1, Carrie James1, Angela Horsley1, Hannah Hodgson2, Tom Hardwick2
1Hospice UK, 2Young people with lived experience
*Correspondence should be addressed to:
Hospice UK ran a three-year programme, supported by the DD McPhail Charitable Settlement, from 2019 to 2022. This included: leading and developing a national network for Transition Co-ordinators, supporting the establishment of three regional ECHO hubs and producing online resources for professionals involved in transitional care for young people. The project engaged with young people with lived experience of transitional care to hear what they valued.
New web resources to support those caring for young people transitioning to adult services
Supporting the updating of national transition resources
Sharing learning and building lasting networks to drive improvements in care
N/A
N/A
None
Presentation Type – Oral or Poster, Poster Presentation
Abstract ID: 93
Southern PEARL
Topic: Public Health Palliative Care
Gerard Leddy*
Southern Health & Social Care Trust
*Correspondence should be addressed to:
To provide an accessible, educational resource for professionals in key areas related to PEOLC.
To use the same format to provide an accessible, educational resource for service users in relation to PEOLC, to help with understanding what is available and set realistic expectations.
Design and/or Method, A collaborative, qualitative approach was used with multiple specialist teams designing a combination of presentations, videos and other educational resources on key areas of PEOLC. The key areas identified where obtained from questionnaires shared with teams across the SHSCT to identify areas they feel they require further training.
N/A
Abstract ID: 95
Does ‘Necessary Discussions’ support a human rights-based approach? Evaluating a digital Advance Care Planning Resource for nursing home staff and family carers
Topic: Death and grief literacy
Olivia Jamison*, Roisin O’Neill, Kevin Brazil
Queen’s University Belfast
*Correspondence should be addressed to:
Design and/or Method, A detailed mapping review was conducted into each component of Necessary Discussions with the FREDA principles (fairness, respect, equality, dignity, and autonomy). This was completed by two independent reviewers, who reviewed resource modules independently. Where differences emerged, it was arbitrated in a team meeting involving a third reviewer.
N/A
N/A
None
Abstract ID: 103
Show, don’t tell: how can we present public health palliative care information visually?
Seminar Topic: Public Health Palliative Care
Dr Sarah Cousins*, Jayne McAuley
Southern Health and Social Care Trust NHS
*Correspondence should be addressed to:
N/A
N/A
None