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All Outputs (24)

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.

Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops (2024)
Journal Article
Mitchell, S., Turner, N., Fryer, K., Aunger, J., Beng, J., Couchman, E., Leach, I., Bayly, J., Gardiner, C., Sleeman, K. E., & Evans, C. J. (2024). Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops. Palliative Medicine, 38(8), 830-841. https://doi.org/10.1177/02692163241248962

Background:
Inequalities in access to palliative and end of life care are longstanding. Integration of primary and palliative care has the potential to improve equity in the community. Evidence to inform integration is scarce as research that consid... Read More about Integration of primary care and palliative care services to improve equality and equity at the end-of-life: Findings from realist stakeholder workshops.

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.

A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research (2024)
Journal Article
Mitchell, S., Turner, N., Fryer, K., Beng, J., Ogden, M. E., Watson, M., Gardiner, C., Bayly, J., Sleeman, K. E., & Evans, C. J. (2024). A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research. Research Involvement and Engagement, 10(1), Article 19. https://doi.org/10.1186/s40900-023-00525-3

Background: There are marked inequalities in palliative care provision. Research is needed to understand how such inequalities can be addressed, so that everyone living with advanced illness can receive the care they need, when they need it. Research... Read More about A framework for more equitable, diverse, and inclusive Patient and Public Involvement for palliative care research.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study (2024)
Journal Article
Leach, I., Mayland, C. R., Turner, N., & Mitchell, S. (2024). Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study. British Journal of General Practice, 74(739), e88-e95. https://doi.org/10.3399/BJGP.2023.0071

Background Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly frail ol... Read More about Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study.

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.

Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery (2022)
Journal Article
Turner, N., Wahid, A., Oliver, P., Gardiner, C., Chapman, H., Khan, D., Boyd, K., Dale, J., Barclay, S., Mayland, C. R., & Mitchell, S. J. (2023). Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery. Palliative Medicine, 37(2), 235-243. https://doi.org/10.1177/02692163221140435

Background: The need for end-of-life care in the community increased significantly during the COVID-19 pandemic. Primary care services, including general practitioners and community nurses, had a critical role in providing such care, rapidly changing... Read More about Role and response of primary healthcare services in community end-of-life care during COVID-19: Qualitative study and recommendations for primary palliative care delivery.

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.

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools (2022)
Journal Article
Mayland, C. R., Sunderland, K. A., Cooper, M., Taylor, P., Powell, P. A., Zeigler, L., Cox, V., Gilman, C., Turner, N., Flemming, K., & Fraser, L. K. (2022). Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools. Palliative Medicine, 36(8), 1186-1206. https://doi.org/10.1177/02692163221105599

Background:
The circumstances and care provided at the end of a child’s life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to en... Read More about Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-Pall): a qualitative interview study protocol (2022)
Journal Article
Mitchell, S., Leach, I., Turner, N., & Mayland, C. R. (2022). Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-Pall): a qualitative interview study protocol. BMJ Open, 12(6), Article e062500. https://doi.org/10.1136/bmjopen-2022-062500

Introduction More people are living with multimorbidity, defined as two or more long-term physical or mental health conditions. Multimorbidity is associated with poor quality of life and high treatment burden. Palliative care identification tools hav... Read More about Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-Pall): a qualitative interview study protocol.

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.

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.

‘My life's properly beginning’: young people with a terminally ill parent talk about the future (2020)
Journal Article
Turner, N. (2020). ‘My life's properly beginning’: young people with a terminally ill parent talk about the future. Sociology of Health and Illness, 42(5), 1171-1183. https://doi.org/10.1111/1467-9566.13086

This paper explores how young people who are living with a parent who is dying talk about the future. Drawing on a qualitative, interview study, I argue that young people are able to move imaginatively beyond the death of a parent, and in doing so, t... Read More about ‘My life's properly beginning’: young people with a terminally ill parent talk about the future.

What do family caregivers want from domiciliary care for relatives living with dementia? a qualitative study (2020)
Journal Article
Pollock, K., Wilkinson, S., Perry-Young, L., Turner, N., & Schneider, J. (2021). What do family caregivers want from domiciliary care for relatives living with dementia? a qualitative study. Ageing and Society, 41(9), 2060-2073. https://doi.org/10.1017/S0144686X20000185

In the current ecology of care, social, rather than medical, support is critical in enabling frail older people to live at home. This paper reports findings from a qualitative study about how home care workers (HCWs) support persons with dementia li... Read More about What do family caregivers want from domiciliary care for relatives living with dementia? a qualitative study.

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.

The subjective world of home care workers in dementia: an “order of worth” analysis (2019)
Journal Article
Travers, C., Schneider, J., Pollock, K., Wilkinson, S., Perry-Young, L., & Turner, N. (2019). The subjective world of home care workers in dementia: an “order of worth” analysis. Home Health Care Services Quarterly, 38(2), 96-109. https://doi.org/10.1080/01621424.2019.1578715

The perspective of domiciliary workers is needed to recruit a high-quality workforce and meet growing demand. An English ethnographic study yielded extensive insights. To structure analysis of the study data, we apply a method developed by politica... Read More about The subjective world of home care workers in dementia: an “order of worth” analysis.

‘Going the extra mile’ for older people with dementia: Exploring the voluntary labour of homecare workers (2018)
Journal Article
Turner, N., Schneider, J., Pollock, K., Travers, C., Perry-Young, L., & Wilkinson, S. (2018). ‘Going the extra mile’ for older people with dementia: Exploring the voluntary labour of homecare workers. Dementia, https://doi.org/10.1177/1471301218817616

Homecare workers provide essential physical, social and emotional support to growing numbers of older people with dementia in the UK. Although it is acknowledged that the work can sometimes be demanding, some homecare workers regularly ‘go the extra... Read More about ‘Going the extra mile’ for older people with dementia: Exploring the voluntary labour of homecare workers.