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All Outputs (21)

Expanding Qualitative Interviewing for Studies Involving Adults With Different Communication Needs: Reflections on Research With People Living With Motor Neurone Disease (2024)
Journal Article

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

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

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

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.

Family and health-care professionals managing medicines for patients with serious and terminal illness at home: a qualitative study (2021)
Journal Article

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

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)
Working Paper

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..

Anticipatory prescribing for end of life care in the community: a survey of community nurses in England (2016)
Journal Article

Anticipatory prescribing is increasingly common in the UK, yet little is known about nurses’ roles in the process. As part of a wider study to explore this, a postal survey of 575 community/district, nursing home and palliative care nurses was undert... Read More about Anticipatory prescribing for end of life care in the community: a survey of community nurses in England.

Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life (2015)
Journal Article

Background: Advance care planning (ACP) enables patients to consider, discuss and, if they wish, document their wishes and preferences for future care, including decisions to refuse treatment, in the event that they lose capacity to make decisions fo... Read More about Care and communication between health professionals and patients affected by severe or chronic illness in community care settings: a qualitative study of care at the end of life.