Outputs (15)

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 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.