The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis

Regan, Laurence; Preston, Nancy; Eccles, Fiona; Simpson, Jane

doi:10.1080/13607863.2017.1396578

Cited by 8 publications

(12 citation statements)

References 51 publications

(40 reference statements)

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“…8 Family members are often the primary caregivers for PwALS and relationships between PwALS and their family members play a significant role in the decision-making process. 16 The transitions that PwALS experience significantly affect their caregiver's mental health and physical well-being, as well as the caregiver's relationship with the PwALS. 17 This study uses a qualitative descriptive approach to gather information from PwALS and caregivers to understand how PwALS and caregivers experience transitions throughout their ALS journey and how those transitions affect their QOL.…”

Section: Introductionmentioning

confidence: 99%

Transitions in Amyotrophic Lateral Sclerosis: Patient and Caregiver Experiences

Munan

Luth

Genuis

et al. 2020

Can. J. Neurol. Sci.

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Background: Amyotrophic lateral sclerosis (ALS) presents many transitions for persons/people with ALS (PwALS) and their caregivers. Transitions are passages from one life phase, condition, or status to another. We used qualitative methods to understand how PwALS and caregivers experience transitions throughout their ALS journey. Methods: PwALS and their caregivers were recruited from a multidisciplinary ALS clinic in Edmonton, Canada. We recruited patients at the stage of ALS that home mechanical ventilation, a feeding tube, and/or assistive communication technology had been offered. Semi-structured interviews were audio-recorded, transcribed, and analyzed using qualitative thematic analysis. Results: We interviewed 14 PwALS and 15 caregivers and identified 5 recurring themes. The importance of community was identified by many PwALS and caregivers who expressed feelings of loneliness and isolation. Most caregivers were spouses and couples navigated a change in their relationship roles as one spouse transitioned to becoming a caregiver while the other transitioned to dependency. The caregiver spouses reported a sense of “total responsibility” that encompassed continual vigilance for the PwALS’s well-being, managing their household and finances. PwALS and caregivers reported transitioning to reliance on life-sustaining medical devices; early adoption and information on these devices increased their quality of life. Participants also wanted more and earlier information on advanced care planning. PwALS and caregivers identified adapting to new forms of communication as a necessity. Conclusion: ALS presents many transitions for PwALS and caregivers. Understanding these transitions is important for ALS healthcare professionals who seek to implement best care practices.

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Section: Introductionmentioning

confidence: 99%

Transitions in Amyotrophic Lateral Sclerosis: Patient and Caregiver Experiences

Munan

Luth

Genuis

et al. 2020

Can. J. Neurol. Sci.

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“…Any framework for improving palliative care for people with motor neurone disease and their carers (or palliative care more widely) should take account of individual variability and the need for autonomy. 65 In relation to individual's experiences through the disease trajectory, preparation for each phase should ideally take place within the previous phase. Recent work identifying physical triggers for palliative care for those with progressive neurodegenerative conditions could help support this integration.…”

Section: Main Findings Of the Studymentioning

confidence: 99%

“…Such lack of knowledge is an area identified for development from the review and is reflected elsewhere in the literature. 63,65 Carers additionally recognised the potential need for support after death and talked of how lack of palliative care or palliative care occurring only late in the disease process impacted on their bereavement.…”

Section: Main Findings Of the Studymentioning

confidence: 99%

“…Key to ensuring a sense of control is enabling individuals to maintain their autonomy. 65 Support for patients and carers, both individually and as a pair, is vital to helping people adjust to such loss and maintain a sense of control. 67 The holistic and broad nature of support available through palliative care services can provide a path through loss, anticipatory grief and into bereavement.…”

Section: Main Findings Of the Studymentioning

confidence: 99%

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The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Flemming

Turner

Bolsher³

et al. 2020

Palliat Med

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Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.

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“…From a clinical point of view, all the disorders of the body nervous system are defined as neurological diseases and are characterized by a variety of symptoms. These span from altered levels of consciousness to problems of thought, feeling or behavior, cognitive deficits, confusion, poor coordination, loss of sensation, and paralysis [ 1 , 2 , 3 ]. Given the dramatically high number of people afflicted with slow progressive loss of one or more functions of the NS, the social impact of these illnesses is upsetting.…”

Section: Introductionmentioning

confidence: 99%

Could Proteomics Become a Future Useful Tool to Shed Light on the Mechanisms of Rare Neurodegenerative Disorders?

et al. 2018

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Very often the clinical features of rare neurodegenerative disorders overlap with those of other, more common clinical disturbances. As a consequence, not only the true incidence of these disorders is underestimated, but many patients also experience a significant delay before a definitive diagnosis. Under this scenario, it appears clear that any accurate tool producing information about the pathological mechanisms of these disorders would offer a novel context for their precise identification by strongly enhancing the interpretation of symptoms. With the advent of proteomics, detection and identification of proteins in different organs/tissues, aimed at understanding whether they represent an attractive tool for monitoring alterations in these districts, has become an area of increasing interest. The aim of this report is to provide an overview of the most recent applications of proteomics as a new strategy for identifying biomarkers with a clinical utility for the investigation of rare neurodegenerative disorders.

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The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis

Cited by 8 publications

References 51 publications

Transitions in Amyotrophic Lateral Sclerosis: Patient and Caregiver Experiences

Transitions in Amyotrophic Lateral Sclerosis: Patient and Caregiver Experiences

The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Could Proteomics Become a Future Useful Tool to Shed Light on the Mechanisms of Rare Neurodegenerative Disorders?

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