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All Outputs (27)

Providing life-sustaining treatments at home for those with Motor Neurone Disease: A qualitative study of bereaved family members’ experiences of responsibility (2025)
Journal Article
Wilson, E., Palmer, J., Kaltsakas, G., Lee, J.-S., & Faull, C. (2025). Providing life-sustaining treatments at home for those with Motor Neurone Disease: A qualitative study of bereaved family members’ experiences of responsibility. Palliative Medicine, 39(5), 584-593. https://doi.org/10.1177/02692163251327866

Background: Motor neurone disease is an incurable neurodegenerative condition that progressively impairs motor function. It affects mobility, speech, swallowing and breathing, leading to significant dependence on others. Home mechanical ventilation c... Read More about Providing life-sustaining treatments at home for those with Motor Neurone Disease: A qualitative study of bereaved family members’ experiences of responsibility.

The role and value of a hospice night support service in supporting out-of-hours domiciliary care: A qualitative study of staff perspectives (2025)
Journal Article
Pollock, K., Field-Richards, S. E., O'Connor, M., Wilson, E., & Kristian, P. The role and value of a hospice night support service in supporting out-of-hours domiciliary care: A qualitative study of staff perspectives. Health Open Research, 7, Article 4. https://doi.org/10.12688/healthopenres.13775.1

Background

It is important to develop an adequate evidence base regarding the resources needed to meet the complex care needs of patients dying at home, and how care might best be resourced and coordinated. Currently, however, there is little info... Read More about The role and value of a hospice night support service in supporting out-of-hours domiciliary care: A qualitative study of staff perspectives.

Experiences of End-of-Life Decision-Making in Equine Veterinary and Charity Teams (2025)
Journal Article
Cameron, A., Geldard, M., Mair, T., England, G., Burford, J., Freeman, S., Pollock, K., & Wilson, E. (2025). Experiences of End-of-Life Decision-Making in Equine Veterinary and Charity Teams. Animals, 15(5), Article 678. https://doi.org/10.3390/ani15050678

Veterinary and charity teams are frequently involved in equine end-of-life decisions. These can cause ethical dilemmas and emotional burdens and complicate communication with owners. Semi-structured focus groups explored experiences of making decisio... Read More about Experiences of End-of-Life Decision-Making in Equine Veterinary and Charity Teams.

The impact of home mechanical ventilation on the time and manner of death for those with Motor Neurone Disease (MND): a qualitative study of bereaved family members (2024)
Journal Article
Caswell, G., & Wilson, E. (2024). The impact of home mechanical ventilation on the time and manner of death for those with Motor Neurone Disease (MND): a qualitative study of bereaved family members. Social Science and Medicine, 360, Article 117345. https://doi.org/10.1016/j.socscimed.2024.117345

Motor neurone disease (MND) is a progressive neurodegenerative disorder which is ultimately terminal. It causes muscle weakness which can lead to the need for assistance in breathing, for some with the disease. This paper draws on qualitative researc... Read More about The impact of home mechanical ventilation on the time and manner of death for those with Motor Neurone Disease (MND): a qualitative study of bereaved family members.

Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review (2024)
Journal Article
Turner, N., Faull, C., Palmer, J., Armstrong, A., Bedford, J., Turner, M. R., & Wilson, E. (2024). Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review. Brain Sciences, 14(8), Article 821. https://doi.org/10.3390/brainsci14080821

Tracheostomy ventilation (TV) can increase survival time for people living with motor neurone disease (MND); however, the use of TV varies between countries. Concerns regarding anticipated quality of life (QoL) are among the reasons given by healthca... Read More about Understanding Quality of Life for People with Motor Neurone Disease Who Use Tracheostomy Ventilation and Family Members: A Scoping Review.

‘Beyond the Reach of Palliative Care’: A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying (2024)
Journal Article
Pollock, K., Caswell, G., Turner, N., & Wilson, E. (2024). ‘Beyond the Reach of Palliative Care’: A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying. Qualitative Health Research, 34(14), 1428-1441. https://doi.org/10.1177/10497323241246705

The demands and costs of health care resulting from increasingly ageing populations have become a major public health issue in the United Kingdom and other industrially developed nations. Concern with cost containment and shortage of resources has pr... Read More about ‘Beyond the Reach of Palliative Care’: A Qualitative Study of Patient and Public Experiences and Anticipation of Death and Dying.

Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease (2024)
Journal Article
Wilson, E., & Turner, N. (2024). Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease. International Journal of Qualitative Methods, 23, https://doi.org/10.1177/16094069241251537

This article explores the challenges and adaptations we undertook to engage people with different communication needs, specifically those living with motor neurone disease (MND), in qualitative research interviews. While interviewing those in advance... Read More about Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease.

End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives (2024)
Journal Article
Wilson, E., Palmer, J., Armstrong, A., Messer, B., Presswood, E., & Faull, C. (2024). End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives. BMC Palliative Care, 23(1), Article 115. https://doi.org/10.1186/s12904-024-01443-1

Background
Motor Neurone Disease (MND) leads to muscle weakening, affecting movement, speech, and breathing. Home mechanical ventilation, particularly non-invasive ventilation (NIV), is used to alleviate symptoms and support breathing in people livi... Read More about End of life decision making when home mechanical ventilation is used to sustain breathing in Motor Neurone Disease: patient and family perspectives.

Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol (2023)
Journal Article
Wilson, E., Turner, N., Faull, C., Palmer, J., Turner, M. R., & Davidson, S. (2023). Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol. BMJ Open, 13(3), Article e071624. https://doi.org/10.1136/bmjopen-2023-071624

Introduction: Home mechanical ventilation can be used to manage symptoms of breathlessness and sustain life for people living with motor neuron disease (plwMND). In the UK, less than 1% of plwMND use tracheostomy ventilation (TV). This contrasts with... Read More about Understanding living with tracheostomy ventilation for motor neuron disease and the implications for quality of life: a qualitative study protocol.

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.

‘It’s Not Like in the Films’: Bereaved People’s Experiences of the Deathbed Vigil (2022)
Journal Article
Caswell, G., Wilson, E., Turner, N., & Pollock, K. (2022). ‘It’s Not Like in the Films’: Bereaved People’s Experiences of the Deathbed Vigil. OMEGA - Journal of Death and Dying, https://doi.org/10.1177/00302228221133413

This paper explores how people enact and experience the deathbed vigil when someone close to them is dying. It draws on qualitative interviews with 34 bereaved people carried out as part of a wider study exploring public perceptions of death and dyin... Read More about ‘It’s Not Like in the Films’: Bereaved People’s Experiences of the Deathbed Vigil.

Scoping review of end-of-life decision-making models used in dogs, cats and equids (2022)
Journal Article
Cameron, A., Pollock, K., Wilson, E., Burford, J., England, G., & Freeman, S. (2022). Scoping review of end-of-life decision-making models used in dogs, cats and equids. Veterinary Record, 191(4), Article e1730. https://doi.org/10.1002/vetr.1730

Background: End-of-life decisions for companion animals can be stressful for veterinarians and owners, and when delayed result in poor animal welfare. Delayed euthanasia has been identified as a particularly prominent issue for horses. This scoping r... Read More about Scoping review of end-of-life decision-making models used in dogs, cats and equids.

Managing medicines at the end of life: a position paper for health policy and practice (2021)
Journal Article
Latif, A., Faull, C., Waring, J., Wilson, E., Anderson, C., Avery, A., & Pollock, K. (2021). Managing medicines at the end of life: a position paper for health policy and practice. Journal of Health Organization and Management, 35(9), 368-377. https://doi.org/10.1108/JHOM-11-2020-0440

Purpose: The impact of population ageing is significant, multifaceted and characterised by frailty and multi-morbidity. The COVID-19 pandemic has accelerated care pathways and policies promoting self-management and home-based care. One under-research... Read More about Managing medicines at the end of life: a position paper for health policy and practice.

Managing medicines at the end of life: a position paper for health policy and practice (2021)
Journal Article
Latif, A., Faull, C., Waring, J., Wilson, E., Anderson, C., Avery, A., & Pollock, K. (2021). Managing medicines at the end of life: a position paper for health policy and practice. Journal of Health Organization and Management, 35(9), 368-377. https://doi.org/10.1108/JHOM-11-2020-0440

Purpose The impact of population aging is significant, multifaceted and characterised by frailty and multi-morbidity. The COVID-19 pandemic has accelerated care pathways and policies promoting self-management and home-based care. One under-researched... Read More about Managing medicines at the end of life: a position paper for health policy and practice.

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study (2021)
Journal Article
Pollock, K., Wilson, E., Caswell, G., Latif, A., Caswell, A., Avery, A., Anderson, C., Crosby, V., & Faul, C. (2021). Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study. Health Services and Delivery Research, 9(14), 1-162. https://doi.org/10.3310/hsdr09140

Background
More effective ways of managing symptoms of chronic and terminal illness enable patients to be cared for, and to die, at home. This requires patients and family caregivers to manage complex medicines regimens, including powerful painkille... Read More about Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study.

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.

An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study. An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study. (2019)
Preprint / Working Paper
Wilson, E., Caswell, G., Latif, A., Anderson, C., Faull, C., & Pollock, K. An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study. An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study

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. An exploration of the experiences of professionals supporting patients approaching the end of life in medicines management at home. A qualitative study..

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.

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites (2018)
Journal Article
Johnston, B., Patterson, A., Bird, L., Wilson, E., Almack, K., Mathews, G., & Seymour, J. (2018). Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites. BMC Palliative Care, 17(1), https://doi.org/10.1186/s12904-018-0281-9

Background:
The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnershi... Read More about Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites.