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International Observatory on End of Life Care

  1. 2022
  2. Published

    Implementing and evaluating online advance care planning training in UK nursing homes during COVID-19: findings from the Necessary Discussions multi-site case study project

    Cousins, E., Preston, N., Doherty, J., Varey, S., Harding, A., Adrienne, M., Harrison Dening, K., Finucane, A., Carter, G., Mitchell, G. & Brazil, K., 13/05/2022, In: BMC Geriatrics. 22, 419.

    Research output: Contribution to journalJournal articlepeer-review

  3. Published

    Developing country specific questions about end-of-life care for nursing home residents with advanced dementia using the nominal group technique with family caregivers.

    Bavelaar, L., Nicula, M., Morris, S., Kaasalainen, S., Achterberg, W., Loucka, M., Vickova, K., Thompson, G., Cornally, N., Hartigan, I., Harding, A., Preston, N., Walshe, C., Cousins, E., Harrison Dening, K., De Vries, K., Brazil, K. & van der Steen, J. T., 30/04/2022, In: Patient Education and Counseling. 105, 4, p. 965-973 9 p.

    Research output: Contribution to journalJournal articlepeer-review

  4. Published

    Prevalence vs impact: a mixed methods study of survivorship issues in colorectal cancer

    Drury, A., Payne, S. & Brady, A-M., 30/04/2022, In: Quality of Life Research. 31, 4, p. 1117-1134 18 p.

    Research output: Contribution to journalJournal articlepeer-review

  5. Forthcoming

    The experience of informal caregivers in providing patient care in hospitals in low- and middle-income countries: A qualitative meta-synthesis

    Hogan, U., Bingley, A., Morbey, H. & Walshe, C., 13/04/2022, (Accepted/In press) In: Journal of Health Services Research and Policy.

    Research output: Contribution to journalJournal articlepeer-review

  6. Published

    Revised recommendations on standards and norms for palliative care in Europe from the European Association for Palliative Care (EAPC): A Delphi study

    Payne, S., Harding, A., Williams, T., Ling, J. & Ostgathe, C., 1/04/2022, In: Palliative Medicine. 36, 4, p. 680-697 18 p.

    Research output: Contribution to journalJournal articlepeer-review

  7. Published

    The impact on emotional well-being of being a palliative care volunteer: An interpretative phenomenological analysis

    Coleman, H., Sanderson-Thomas, A. & Walshe, C., 1/04/2022, In: Palliative Medicine. 36, 4, p. 671-679 9 p.

    Research output: Contribution to journalJournal articlepeer-review

  8. Published

    Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall)

    Sleeman, K. E., Cripps, R. L., Murtagh, F. E. M., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J. & Fraser, L. K., 31/03/2022, In: Journal of Palliative Medicine. 25, 3, p. 465-471 7 p.

    Research output: Contribution to journalJournal articlepeer-review

  9. Published

    Identification of Digital Health Priorities for Palliative Care Research: Modified Delphi Study

    Nwosu, A., McGlinchey, T., Sanders, J., Stanley, S., Palfrey, J., Lubbers, P., Chapman, L., Finucane, A. & Mason, S., 21/03/2022, In: JMIR Aging. 5, 1, 15 p., e32075.

    Research output: Contribution to journalJournal articlepeer-review

  10. Published

    Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach

    Garani-Papadatos, T., Natsiavas, P., Meyerheim, M., Hoffmann, S., Karamanidou, C. & Payne, S. A., 18/03/2022, In: Frontiers in Digital Health. 4, 10 p., 730430.

    Research output: Contribution to journalReview articlepeer-review

  11. E-pub ahead of print

    Experiences of staff providing specialist palliative care during COVID-19: A multiple qualitative case study

    Bradshaw, A., Dunleavy, L., Garner, I., Preston, N., Bajwah, S., Cripps, R., Fraser, L., Maddocks, M., Hocaoglu, M., Murtagh, F. E. M., Oluyase, A., Sleeman, K. E., Higginson, I. J. & Walshe, C., 8/02/2022, (E-pub ahead of print) In: Journal of the Royal Society of Medicine.

    Research output: Contribution to journalJournal articlepeer-review

  12. E-pub ahead of print

    The experience of hospitalization in people with advanced chronic obstructive pulmonary disease: A qualitative, phenomenological study

    Bakthavatsalu, B., Walshe, C. & Simpson, J., 4/02/2022, (E-pub ahead of print) In: Chronic Illness. 15 p.

    Research output: Contribution to journalJournal articlepeer-review

  13. Published

    Development of guidelines to reduce, handle and report missing data in palliative care trials: A multi-stakeholder modified nominal group technique

    Hussain, J. A., White, I. R., Johnson, M. J., Byrne, A., Preston, N. J., Haines, A., Seddon, K. & Peters, T. J., 17/01/2022, In: Palliative Medicine. 36, 1, p. 59-70 12 p.

    Research output: Contribution to journalJournal articlepeer-review

  14. Published

    The Decision-Making Process for Palliative Sedation for Patients with Advanced Cancer—Analysis from a Systematic Review of Prospective Studies

    Belar, A., Arantzamendi, M., Menten, J., Payne, S., Hasselaar, J. & Centeno, C., 8/01/2022, In: Cancers. 14, 2, 301.

    Research output: Contribution to journalJournal articlepeer-review

  15. 2021
  16. Published

    Applying an Analytical Process to Longitudinal Narrative Interviews With Couples Living and Dying With Lewy Body Dementia

    Bentley, A., Walshe, C. & Salifu, Y., 31/12/2021, In: International Journal of Qualitative Methods. 20, 8 p.

    Research output: Contribution to journalJournal articlepeer-review

  17. Published

    Exploring the experiences of living with Lewy body dementia: An integrative review

    Bentley, A., Salifu, Y. & Walshe, C., 31/12/2021, In: Journal of Advanced Nursing. 77, 12, p. 4632-4645 14 p.

    Research output: Contribution to journalJournal articlepeer-review

  18. E-pub ahead of print

    Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

    Bayly, J., Bradshaw, A., Fettes, L., Omarjee, M., Talbot-Rice, H., Walshe, C., Sleeman, K. E., Bajwah, S., Dunleavy, L., Hocaoglu, M., Oluyase, A., Garner, I., Cripps, R., Preston, N., Fraser, L. K., Murtagh, F. EM., Higginson, I. J. & Maddocks, M., 29/12/2021, (E-pub ahead of print) In: Palliative Medicine. 13 p.

    Research output: Contribution to journalJournal articlepeer-review

  19. E-pub ahead of print
  20. Published

    A good death in the child with life shortening illness: A qualitative multiple-case study

    Chong, P. H., Walshe, C. & Hughes, S., 1/12/2021, In: Palliative Medicine. 35, 10, p. 1878-1888 11 p.

    Research output: Contribution to journalJournal articlepeer-review

  21. Published

    Palliative care integration for patients with advanced chronic obstructive pulmonary disease (COPD): Identifying essential components using participatory action research

    Fusi-Schmidhauser, T., Froggatt, K. & Preston, N., 1/12/2021, In: Palliative Medicine. 35, 10, p. 1933-1940 8 p.

    Research output: Contribution to journalJournal articlepeer-review

  22. Published

    Experiences of staff providing specialist palliative care during COVID-19: A multiple qualitative case study

    Bradshaw, A., Dunleavy, L., Garner, I., Preston, N., Bajwah, S., Cripps, R., Fraser, L., Maddocks, M., Hocaoglu, M., Murtagh, F. E. M., Oluyase, A., Sleeman, K. E., Higginson, IJ. & Walshe, C., 20/11/2021, In: medRxiv.

    Research output: Contribution to journalJournal article

  23. Forthcoming

    Change in activity of palliative care services during the Covid-19 pandemic: a multi-national survey (CovPall)

    Dunleavy, L., Preston, N. & Walshe, C., 17/11/2021, (Accepted/In press) In: Journal of Palliative Medicine.

    Research output: Contribution to journalJournal articlepeer-review

  24. Published

    Undertaking Research Using Online Nominal Group Technique: Lessons from an International Study (RESPACC)

    Mason, S., Ling, J., Mosoiu, D., Arantzamendi, M., Tserkezoglou, A. J., Predoiu, O. & Payne, S., 17/11/2021, In: Journal of Palliative Medicine. 24, 12, p. 1867-1871 5 p.

    Research output: Contribution to journalJournal articlepeer-review

  25. Published

    MyPal ADULT study protocol: A randomised clinical trial of the MyPal ePRO-based early palliative care system in adult patients with haematological malignancies

    Scarfò, L., Karamanidou, C., Doubek, M., Garani-Papadatos, T., Didi, J., Pontikoglou, C., Ling, J., Payne, C., Papadaki, H. A., Rosenquist, R., Stavroyianni, N., Payne, S., Ghia, P., Natsiavas, P., Maramis, C. & Stamatopoulos, K., 2/11/2021, In: BMJ Open. 11, 11, 10 p., e050256.

    Research output: Contribution to journalJournal articlepeer-review

  26. E-pub ahead of print

    “Resuscitate and Push”: End-of-Life Care Experiences of Healthcare Staff in the Emergency Department – A Hermeneutic Phenomenological Study

    Bayuo, J., Anago, E. K., Agyei, F. B., Salifu, Y., Kyei Baffour, P. & Atta Poku, C., 29/10/2021, (E-pub ahead of print) In: Journal of Palliative Care.

    Research output: Contribution to journalJournal articlepeer-review

  27. Published

    What are the emotional experiences of being a volunteer in palliative and end-of-life care settings? a systematic review and thematic synthesis

    Coleman, H. & Walshe, C., 30/09/2021, In: Journal of Pain and Symptom Management. 62, 3, p. 232-247 16 p.

    Research output: Contribution to journalJournal articlepeer-review

  28. E-pub ahead of print

    Prohibit, protect, or adapt? The changing role of volunteers in palliative and hospice care services during the COVID-19 pandemic. A multinational survey (CovPall).

    Walshe, C., Garner, I., Dunleavy, L., Preston, N., Bradshaw, A., Cripps, R., Bajwah, S., Sleeman, K., Hocaoglu, M., Murtagh, F., Oluyase, A., Fraser, L. & Irene, H., 8/09/2021, (E-pub ahead of print) In: International Journal of Health Policy and Management.

    Research output: Contribution to journalJournal articlepeer-review

  29. Published

    Smiles behind the masks: A systematic review and narrative synthesis exploring how family members of seriously ill or dying patients are supported during infectious disease outbreaks

    Bloomer, M. & Walshe, C., 1/09/2021, In: Palliative Medicine. 35, 8, p. 1452-1467 16 p.

    Research output: Contribution to journalJournal articlepeer-review

  30. Published

    The challenges of caring for people dying from COVID-19: a multinational, observational study (CovPall)

    Oluyase, A., Hocaoglu, M., Cripps, R., Maddocks, M., Walshe, C., Fraser, L., Preston, N., Dunleavy, L., Bradshaw, A., Murtagh, F., Bajwah, S., Sleeman, K. & Irene, H., 1/09/2021, In: Journal of Pain and Symptom Management. 62, 3, p. 460-4470 11 p.

    Research output: Contribution to journalJournal articlepeer-review

  31. Published

    Hospitalisation in the last month of life and in-hospital death of nursing home residents: A cross-sectional analysis of six European countries

    Honinx, E., Piers, R. D., Onwuteaka-Philipsen, B. D., Payne, S., Szczerbińska, K., Gambassi, G., Kylänen, M., Deliens, L., Van Den Block, L. & Smets, T., 31/08/2021, In: BMJ Open. 11, 8, 12 p., e047086.

    Research output: Contribution to journalJournal articlepeer-review

  32. Published

    Large differences in the organization of palliative care in nursing homes in six European countries: findings from the PACE cross-sectional study

    PACE consortium, 25/08/2021, In: BMC Palliative Care. 20, 1, 131.

    Research output: Contribution to journalJournal articlepeer-review

  33. Forthcoming

    Equal but inequitable: response of specialist palliative care and hospice services to people from ethnic minority groups with COVID-19- an observational study (CovPall)

    Bajwah, S., Koffman, J., Hussein, J., Bradshaw, A., Hocaoglu, M., Fraser, L., Oluyase, A., Allwin, C., Dunleavy, L., Preston, N., Cripps, R., Maddocks, M., Sleeman, K., Irene, H., Walshe, C. & Murtagh, F., 17/08/2021, (Accepted/In press) In: BMJ Supportive and Palliative Care.

    Research output: Contribution to journalJournal articlepeer-review

  34. Forthcoming

    A systematic review with thematic synthesis of the experience of hospitalization in people with advanced chronic obstructive pulmonary disease

    Bakthavatsalu, B., Walshe, C. & Simpson, J., 16/08/2021, (Accepted/In press) In: COPD.

    Research output: Contribution to journalJournal articlepeer-review

  35. Published

    Developing and evaluating online COVID-centric advance care planning training and information resources for nursing staff and family members in nursing homes: The Necessary Discussions Study Protocol

    Harding, A., Preston, N., Doherty, J., Cousins, E., Varey, S., McCann, A., Harrison Dening, K., Finucane, A., Carter, G., Mitchell, G. & Brazil, K., 9/08/2021, In: BMC Geriatrics. 21, 8 p., 456.

    Research output: Contribution to journalJournal articlepeer-review

  36. Published

    Exploring the experience of recurrence with advanced cancer for people who perceived themselves to be cancer free: a grounded theory study

    Economou, D., Walshe, C. & Brearley, S., 31/07/2021, In: Supportive Care in Cancer. 29, 7, p. 3885-3894 10 p.

    Research output: Contribution to journalJournal articlepeer-review

  37. Published

    MyPal: Designing and Evaluating Digital Patient-Reported Outcome Systems for Cancer Palliative Care in Europe

    Payne, S. A., Moore, D. C. & Stamatopoulos, K., 31/07/2021, In: Journal of Palliative Medicine. 24, 7, p. 962-964 3 p.

    Research output: Contribution to journalEditorialpeer-review

  38. Published

    Peer Mentors for People with Advanced Cancer: Lessons Learnt from Recruiting and Training Peer Mentors for a Feasibility Randomized Controlled Trial

    Walshe, C., Roberts, D., Calman, L., Appleton, L., Croft, R., Perez Algorta, G., Skevington, S., Lloyd-Williams, M. & Grande, G., 31/07/2021, In: Journal of Cancer Education. 36, 4, p. 710-718 9 p.

    Research output: Contribution to journalJournal articlepeer-review

  39. Published

    Technology in Palliative Care (TIP): the identification of digital priorities for palliative care research using a modified Delphi method

    Nwosu, A., McGlinchey, T., Sanders, J., Stanley, S., Palfrey, J., Lubbers, P., Chapman, L., Finucane, A. & Mason, S., 3/07/2021, In: medRxiv.

    Research output: Contribution to journalJournal article

  40. Published

    Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services

    Bradshaw, A., Dunleavy, L., Walshe, C., Preston, N., Cripps, R., Hocaoglu, M., Bajwah, S., Maddocks, M., Oluyase, A., Sleeman, K. E., Higginson, I. J., Fraser, L. & Murtagh, F., 1/07/2021, In: Palliative Medicine. 35, 7, p. 1225-1237 13 p.

    Research output: Contribution to journalJournal articlepeer-review

  41. Published

    ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall)

    CovPall Study Team, Dunleavy, L., Preston, N., Bajwah, S., Bradshaw, A., Cripps, R., Fraser, L., Maddocks, M., Hocaoglu, M., Murtagh, F. EM., Oluyase, A., Sleeman, K., Higginson, I. J. & Walshe, C., 31/05/2021, In: Palliative Medicine. 35, 5, p. 814-829 16 p.

    Research output: Contribution to journalJournal articlepeer-review

  42. Published

    Constructing a new role for family carers and volunteers providing care towards the end of life: An Action Research approach exploring a new model of hospice care

    Walshe, C., Barnes, H., Turner, M. & Hughes, S., 31/05/2021, In: Health & Social Care in the Community. 29, 3, p. 837-845 9 p.

    Research output: Contribution to journalJournal articlepeer-review

  43. E-pub ahead of print

    Women's experiences of advanced breast cancer in a resource-limited Arab context: A Stakian multi-case study

    Fearon, D., Hughes, S. & Brearley, S., 21/05/2021, (E-pub ahead of print) In: Psycho-Oncology.

    Research output: Contribution to journalJournal articlepeer-review

  44. Published

    Length of stay and palliative care: Understanding long-term care facility residents in Europe

    Collingridge Moore, D., 19/05/2021, Lancaster University. 378 p.

    Research output: ThesisDoctoral Thesis

  45. Published

    Constructivist Stakian Multicase Study: Methodological Issues Encountered in Cross-Cultural Palliative Care Research

    Fearon, D., Hughes, S. & Brearley, S. G., 6/05/2021, In: International Journal of Qualitative Methods. 20

    Research output: Contribution to journalJournal articlepeer-review

  46. Published

    Hearing the voices of children diagnosed with a life-threatening or life-limiting illness and their parents’ accounts in a palliative care setting: A qualitative study

    Ciobanu, E. & Preston, N., 1/05/2021, In: Palliative Medicine. 35, 5, p. 886-892 7 p.

    Research output: Contribution to journalJournal articlepeer-review

  47. Published

    Hospital-based social workers’ perceptions of generalist- and specialist-level palliative social work activities

    Firn, J., Preston, N. & Walshe, C., 1/05/2021, In: Journal of Social Work. 21, 3, p. 416-434 19 p.

    Research output: Contribution to journalJournal articlepeer-review

  48. Published

    Potentially Inappropriate Treatments at the End of Life in Nursing Home Residents: Findings From the PACE Cross-Sectional Study in Six European Countries

    PACE consortium, 22/04/2021, In: Journal of Pain and Symptom Management. 61, 4, p. 732-742 11 p.

    Research output: Contribution to journalJournal articlepeer-review

  49. Forthcoming

    Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

    Bayly, J., Bradshaw, A., Fettes, L., Omarjee, M., Talbot-Rice, H., Walshe, C., Sleeman, K., Bajwah, S., Dunleavy, L., Hocaoglu, M., Oluyase, A., Garner, I., Cripps, R., Preston, N., Fraser, L., Murtagh, F., Irene, H. & Maddocks, M., 19/04/2021, (Accepted/In press) In: medRxiv.

    Research output: Contribution to journalJournal article

  50. Published

    MyPal-Child study protocol: An observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients

    Meyerheim, M., Karamanidou, C., Payne, S., Garani-Papadatos, T., Sander, A., Downing, J., Stamatopoulos, K., Ling, J., Payne, C., Scarfò, L., Lokaj, P., Maramis, C. & Graf, N., 13/04/2021, In: BMJ Open. 11, 4, 9 p., e045226.

    Research output: Contribution to journalJournal articlepeer-review

  51. Published

    Clinical Aspects of Palliative Sedation in Prospective Studies: A Systematic Review

    Arantzamendi, M., Belar, A., Payne, S., Rijpstra, M., Preston, N., Menten, J., Van der Elst, M., Radbruch, L., Hasselaar, J. & Centeno, C., 1/04/2021, In: Journal of Pain and Symptom Management. 61, 4, p. 831-844 14 p.

    Research output: Contribution to journalJournal articlepeer-review

  52. Published

    Evaluating the use of video communication technology in a hospital specialist palliative care team during the COVID-19 pandemic

    Crosby, B., Hanchanale, S., Stanley, S. & Nwosu, A., 31/03/2021, In: AMRC Open Research. 3, 5

    Research output: Contribution to journalJournal article

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