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All Outputs (20)

Talking about death and dying: Findings from deliberative discussion groups with members of the public (2022)
Journal Article
Wilson, E., Caswell, G., Turner, N., & Pollock, K. (2024). Talking about death and dying: Findings from deliberative discussion groups with members of the public. Mortality, 29(1), 176-192. https://doi.org/10.1080/13576275.2022.2136515

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs along... Read More about Talking about death and dying: Findings from deliberative discussion groups with members of the public.

How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial (2022)
Journal Article
Kodba-Čeh, H., Lunder, U., Bulli, F., Caswell, G., van Delden, J. J. M., Kars, M. C., …ACTION Consortium. (2022). How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial. European Journal of Cancer Care, 31(6), Article e1371. https://doi.org/10.1111/ecc.13719

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially s... Read More about How can advance care planning support hope in patients with advanced cancer and their families: A qualitative study as part of the international ACTION trial.

Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial (2020)
Journal Article
Korfage, I. J., Carreras, G., Arnfeldt Christensen, C. M., Billekens, P., Bramley, L., Briggs, L., …Rietjens, J. A. C. (2020). Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial. PLoS Medicine, 17(11), Article e1003422. https://doi.org/10.1371/journal.pmed.1003422

Background: Advance care planning (ACP) supportsindividuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomized clinical trials of ACP in patients with adva... Read More about Advance care planning in patients with advanced cancer: A 6-country, cluster-randomised clinical trial.

A Relative Absence: Exploring Professional Experiences of Funerals Without Mourners (2020)
Journal Article
Turner, N., & Caswell, G. (2022). A Relative Absence: Exploring Professional Experiences of Funerals Without Mourners. OMEGA - Journal of Death and Dying, 85(4), 868-886. https://doi.org/10.1177/0030222820959960

© The Author(s) 2020. When someone dies, it is usual for relatives to gather at a funeral to embody a collective act of eulogy for the deceased and stand against the finality of death. When someone who lived alone dies alone at home, it is not always... Read More about A Relative Absence: Exploring Professional Experiences of Funerals Without Mourners.

Saudi service users’ perceptions and experiences of the quality of their mental health care provision in the Kingdom of Saudi Arabia (KSA): A qualitative inquiry (2020)
Journal Article
Al Mousa, Y., Callaghan, P., Michail, M., & Caswell, G. (2021). Saudi service users’ perceptions and experiences of the quality of their mental health care provision in the Kingdom of Saudi Arabia (KSA): A qualitative inquiry. International Journal of Mental Health Nursing, 30(1), 300-316. https://doi.org/10.1111/inm.12784

© 2020 The Authors. International Journal of Mental Health Nursing published by John Wiley & Sons Australia, Ltd on behalf of Australian College of Mental Health Nurses Inc This paper presents, as part of a larger mixed-methods design, a study gene... Read More about Saudi service users’ perceptions and experiences of the quality of their mental health care provision in the Kingdom of Saudi Arabia (KSA): A qualitative inquiry.

Ethical challenges in researching and telling the stories of recently deceased people (2020)
Journal Article
Caswell, G., & Turner, N. (2021). Ethical challenges in researching and telling the stories of recently deceased people. Research Ethics, 17(2), 162-175. https://doi.org/10.1177/1747016120952503

© The Author(s) 2020. This paper explores ethical challenges encountered when conducting research about, and telling, the stories of individuals who had died before the research began. Cases were explored where individuals who lived alone had died al... Read More about Ethical challenges in researching and telling the stories of recently deceased people.

An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study (2020)
Journal Article
Wilson, E., Caswell, G., Latif, A., Anderson, C., Faull, C., & Pollock, K. (2020). An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study. BMC Palliative Care, 19, Article 66. https://doi.org/10.1186/s12904-020-0537-z

BACKGROUND: The management of medicines towards the end of life can place increasing burdens and responsibilities on patients and families. This has received little attention yet it can be a source of great difficulty and distress patients and famili... Read More about An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study.

Trained facilitators’ experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial (2019)
Journal Article
Zwakman, M., On behalf of the ACTION consortium, Pollock, K., Bulli, F., Caswell, G., Červ, B., …Kars, M. C. (2019). Trained facilitators’ experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial. BMC Cancer, 19(1), Article 1026. https://doi.org/10.1186/s12885-019-6170-7

Abstract Background: In oncology, Health Care Professionals often experience conducting Advance Care Planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial,... Read More about Trained facilitators’ experiences with structured advance care planning conversations in oncology: an international focus group study within the ACTION trial.

Moral ambiguity in media reports of dying alone (2019)
Journal Article
Turner, N., & Caswell, G. (2020). Moral ambiguity in media reports of dying alone. Mortality, 25(3), 266-281. https://doi.org/10.1080/13576275.2019.1657388

More older people are living alone in the UK, thereby increasing the prospect of dying alone at home. Lone deaths tend to be regarded as bad deaths, in that they contravene notions of accompaniment and open awareness espoused in UK end of life care p... Read More about Moral ambiguity in media reports of dying alone.

Managing medicines for patients dying at home: a review of family caregivers’ experiences (2018)
Journal Article
Wilson, E., Caswell, G., Turner, N., & Pollock, K. (2018). Managing medicines for patients dying at home: a review of family caregivers’ experiences. Journal of Pain and Symptom Management, 56(6), 962-974. https://doi.org/10.1016/j.jpainsymman.2018.08.019

Context: Increased life expectancy, technical advances in treatment and symptom control, and the extension of palliative care in community settings not only lengthen life, but make it possible for many patients to be cared for, and to die, at home. M... Read More about Managing medicines for patients dying at home: a review of family caregivers’ experiences.

‘I’ve no fear of dying alone’: exploring perspectives on living and dying alone (2017)
Journal Article
Caswell, G., & O'Connor, M. (2019). ‘I’ve no fear of dying alone’: exploring perspectives on living and dying alone. Mortality, 24(1), 17-31. https://doi.org/10.1080/13576275.2017.1413542

Dying alone is portrayed as undesirable in terms of policy, health and social care provision, the wishes of family and friends, and in popular culture. Despite this, people do often die alone, both in institutional and domestic settings. This paper r... Read More about ‘I’ve no fear of dying alone’: exploring perspectives on living and dying alone.

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers (2017)
Journal Article
Caswell, G., Hardy, B., Ewing, G., Kennedy, S., & Seymour, J. (2019). Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers. BMJ Supportive and Palliative Care, 9(1), 1-7. https://doi.org/10.1136/bmjspcare-2017-001317

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support... Read More about Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers.

The costs, resource use, and cost-effectiveness of Clinical Nurse Specialist (CNSs) led interventions for patients with palliative care needs: a systematic review of international evidence (2017)
Journal Article
Salamanca-Balen, N., Seymour, J., Caswell, G., Whynes, D., & Tod, A. (2017). The costs, resource use, and cost-effectiveness of Clinical Nurse Specialist (CNSs) led interventions for patients with palliative care needs: a systematic review of international evidence. Palliative Medicine, https://doi.org/10.1177/0269216317711570

Background: Patients with palliative care (PC) needs do not access specialist palliative care services according to their necessities. Clinical Nurse Specialists (CNS) working across a variety of fields are playing an increasingly important role in t... Read More about The costs, resource use, and cost-effectiveness of Clinical Nurse Specialist (CNSs) led interventions for patients with palliative care needs: a systematic review of international evidence.

Lung cancer diagnosed following an emergency admission: exploring patient and carer perspectives on delay in seeking help (2017)
Journal Article
Caswell, G., Seymour, J., Crosby, V., Hussain, A., Manderson, C., Farnan, S., …Wilcock, A. (2017). Lung cancer diagnosed following an emergency admission: exploring patient and carer perspectives on delay in seeking help. Supportive Care in Cancer, 25(7), 2259-2266. https://doi.org/10.1007/s00520-017-3633-8

Purpose Compared to others, patients diagnosed with lung cancer following an emergency, unplanned admission to hospital (DFEA) have more advanced disease and poorer prognosis. Little is known about DFEA patients’ beliefs about cancer and its sympt... Read More about Lung cancer diagnosed following an emergency admission: exploring patient and carer perspectives on delay in seeking help.

Advance care planning, a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study (2016)
Journal Article
Rietjens, J. A. C., Korfage, I. J., Dunleavy, L., Preston, N. J., Jabbarian, L. J., Christensen, C. A., …van der Heide, A. (2016). Advance care planning, a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study. BMC Cancer, 16(264), https://doi.org/10.1186/s12885-016-2298-x

Background: Awareness of preferences regarding medical care should be a central component of the care of patients with advanced cancer. Open communication can facilitate this but can occur in an ad hoc or variable manner. Advance care planning (ACP)... Read More about Advance care planning, a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study.

Lung cancer diagnosed following an emergency admission: Mixed methods study of the management, outcomes and needs and experiences of patients and carers (2016)
Journal Article
Wilcock, A., Crosby, V., Hussain, A., McKeever, T. M., Manderson, C., Farnan, S., …Seymour, J. (2016). Lung cancer diagnosed following an emergency admission: Mixed methods study of the management, outcomes and needs and experiences of patients and carers. Respiratory Medicine, 114, 38-45. https://doi.org/10.1016/j.rmed.2016.03.006

Background In the UK, although 40% of patients with lung cancer are diagnosed following an emergency admission (EA), data is limited on their needs and experiences as they progress through diagnostic and treatment pathways. Methods Prospective... Read More about Lung cancer diagnosed following an emergency admission: Mixed methods study of the management, outcomes and needs and experiences of patients and carers.

Agency in the context of social death: dying alone at home (2015)
Journal Article
Caswell, G., & O'Connor, M. (in press). Agency in the context of social death: dying alone at home. Contemporary Social Science, 10(3), https://doi.org/10.1080/21582041.2015.1114663

Each year a number of bodies are found of people who have died alone at home and whose absence from daily life has not been noticed. Media reports tend either to cast these individuals as deviant, or wider society as having abandoned them to a lonely... Read More about Agency in the context of social death: dying alone at home.

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study (2015)
Journal Article
Caswell, G., Pollock, K., Harwood, R., & Porock, D. (in press). Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study. BMC Palliative Care, 14(1), Article 35. https://doi.org/10.1186/s12904-015-0032-0

Background: This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers’ perspective. The age at which people in the UK die is increasing and many conti... Read More about Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.

Lung cancer diagnosed following emergency admission: a mixed methods study protocol to improve understanding of patients’ characteristics, needs, experiences and outcomes (2013)
Journal Article
Wilcock, A., Crosby, V., Freer, S., Freemantle, A., Caswell, G., & Seymour, J. (2013). Lung cancer diagnosed following emergency admission: a mixed methods study protocol to improve understanding of patients’ characteristics, needs, experiences and outcomes. BMC Palliative Care, 12(May), Article 5. https://doi.org/10.1186/1472-684X-12-24

Background Lung cancer is the leading cause of death from cancer in England. About 40% of patients with lung cancer are diagnosed following an emergency admission (DFEA) to hospital. DFEA is more common in women, and more likely with increasing age... Read More about Lung cancer diagnosed following emergency admission: a mixed methods study protocol to improve understanding of patients’ characteristics, needs, experiences and outcomes.