Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

Linse, Katharina; Aust, Elisa; Günther, René; Hermann, Andreas

doi:10.3390/jcm11010254

Cited by 8 publications

(25 citation statements)

References 79 publications

(126 reference statements)

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“…Although the measurement tools used varied greatly, the most used tool was the Amyotrophic Lateral Sclerosis Functional Rating Scale to measure symptom severity 17,19,20 . These studies showed that both caregivers and care recipients gave similar ratings of the impact of symptom severity.…”

Section: Resultsmentioning

confidence: 99%

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

Mossa,

Mayahara,

Emezue

et al. 2023

J Hosp Palliat Nurs

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Neurodegenerative disorders affect over 6 million people in the United States. A subset of these patients experiences symptoms that progress rapidly, along with a 5- to 10-year life expectancy (amyotrophic lateral sclerosis). This subgroup often becomes dependent on family caregivers. Managing care demands at the end of life that are brought on by rapid disease progression has a negative impact on caregiver quality of life. The purpose of this integrative review is to highlight the gaps in the existing body of research on the effect of neuropalliative care on quality of life of this caregiver population. A total of 13 articles met inclusion criteria and were selected for review. The most frequently occurring themes and findings in the literature shed light on neuropalliative care and provided some insight into both caregivers and patients' perspective at the end of life. What sets this population apart from caregivers and patients of other terminal diseases is the nature of disease progression and the rapid life adjustments that come along with it. Integration of neuropalliative has shown to provide additional support for caregivers and patients; however, it remains underused. To promote equitable access to these services, it is necessary to address several structural barriers.

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Section: Resultsmentioning

confidence: 99%

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

Mossa,

Mayahara,

Emezue

et al. 2023

J Hosp Palliat Nurs

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“…Better quality of care, in addition to improving end-of-life for people with ALS themselves, would also help reduce the heavy burden on relatives. 27 …”

Section: Discussionmentioning

confidence: 99%

‘Intensive palliative care’: a qualitative study of issues related to nurses’ care of people with amyotrophic lateral sclerosis at end-of-life

et al. 2023

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Background: Amyotrophic lateral sclerosis (ALS) is currently an incurable and fatal disease, which often comes with a high symptom burden at the end-of-life stage. Little is known about nurses’ experiences in this context. Objective: To explore the experience of nurses caring for people with ALS at end-of-life. Design: A qualitative multiple-case study design. Method: Individual semi-structured interviews were conducted between February and August 2022 with nurses from Quebec, Canada, who had provided care to at least one person living with ALS at the end-of-life in the past 12 months. The content analysis method was used for data analysis and within-case and cross-case analyses were conducted, as well as comparative analyses according to the type of position held by the participants that determined the cases: (1) home care, (2) hospital and (3) palliative care home. Results: Participating in the study were 24 nurses: 9 were from home care, 8 from hospitals and 7 from palliative care homes. Five main themes were identified: (1) identifying the end-of-life period, (2) communication issues, (3) supporting the need for control, (4) accompanying in the fight culture and (5) the extent of the need for care. A sixth theme was also added in order to report the need expressed by nurses to improve their care of patients living with ALS at end-of-life. Conclusions: Although nurses’ experiences varied among the different settings, the study identifies the pressing need for better education and, above all, more resources when caring for a person living with ALS at end-of-life. Future research should explore the experiences of other members of the healthcare team and test interventions designed to improve the quality of life and end-of-life of people living with ALS.

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“…[132][133][134] However, the out-of-pocket cost to patients can reach 10s of thousands of dollars a year, and the supportive care burden on family members can be crushing. 135,136 Given those considerations, less than 10% of people with advanced ALS in the U.S. elect to undergo tracheostomy for extended survival. 137 Regardless of indication, tracheostomy is not necessarily irreversible.…”

Section: Tracheostomymentioning

confidence: 99%

Practical Guide to Management of Long-Term Noninvasive Ventilation for Adults With Chronic Neuromuscular Disease

Hansen‐Flaschen

Ackrivo

2023

Respir Care

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Recent technological advances in respiratory support and monitoring have dramatically enhanced the utility of long-term noninvasive ventilation. Improvements in quality of life and prolonged survival at home have been demonstrated for several common chronic neuromuscular diseases. Many adults with progressive neuromuscular respiratory disease can now comfortably maintain normal ventilation at home to near total respiratory muscle paralysis without needing a tracheostomy. However, current practice in many communities falls short of that potential. Mastery of the new technology calls for detailed awareness of the respiratory cycle, expert knowledge of mechanical devices, facial interfaces, quantitative monitoring tools for home ventilation, and a willingness to stay current in a rapidly expanding body of clinical research. The depth and breadth of the expertise required to manage home assisted ventilation is giving rise to a new focused medical subspecialty in chronic respiratory failure at the interface between pulmonology, critical care, and sleep medicine. For clinicians seeking pragmatic "how to" guidance, this primer presents a comprehensive, physician-directed management approach to long-term noninvasive ventilation of adults with chronic neuromuscular respiratory disease. Bilevel devices, portable ventilators, ventilation modalities, terminology, and monitoring strategies are reviewed in detail. Building on that knowledge base, we present a step-by-step guide to initiation, refinement, and maintenance of home noninvasive ventilation that is tailored to patientcentered goals of therapy. The "quantitative" approach recommended here fully incorporates routine monitoring of home assisted ventilation using technologies that have only recently become widely available including cloud-based device telemonitoring and noninvasive measurements of blood gases. Strategies for troubleshooting and problem solving are included.

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Caregivers’ View of Socio-Medical Care in the Terminal Phase of Amyotrophic Lateral Sclerosis—How Can We Improve Holistic Care in ALS?

Cited by 8 publications

References 79 publications

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

‘Intensive palliative care’: a qualitative study of issues related to nurses’ care of people with amyotrophic lateral sclerosis at end-of-life

Practical Guide to Management of Long-Term Noninvasive Ventilation for Adults With Chronic Neuromuscular Disease

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