scholarly journals Coping Resources and Their Meanings for Ventilator-dependent Amyotrophic Lateral Sclerosis Patients Living at Home in Japan: Sources of Psychological Support, Happiness and Hope

2009 ◽  
Vol 29 (4) ◽  
pp. 32-40 ◽  
Author(s):  
Yuko Hirano
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Coping Resources ◽  
Psychological Support ◽  
Lateral Sclerosis ◽  
At Home

scholarly journals Brazilian Nursing and Psychology students' visits to patients with amyotrophic lateral sclerosis: prospective analysis

2019 ◽  
Vol 77 (11) ◽  
pp. 782-791
Author(s):  
Antonio Geraldo Abreu Filho ◽  
Leila Salomão Plata Cury Tardivo ◽  
Acary Souza Bulle Oliveira ◽  
Helga Cristina Almeida da Silva
Keyword(s):  
Quality Of Life ◽  
Amyotrophic Lateral Sclerosis ◽  
Health Professionals ◽  
Psychology Students ◽  
Physical Symptoms ◽  
Psychological Support ◽  
Life Questionnaire ◽  
Existential Wellbeing ◽  
Lateral Sclerosis

ABSTRACT Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease without a cure, but multidisciplinary treatment can maintain the quality of life (QOL) of persons with ALS (PALS). Despite health professionals possibly being affected by ALS in their care roles, little is known about the impact of ALS care on these professionals. Objective: To analyze the effects of interactions between PALS and Nursing/Psychology students. Methods: Over 12 weeks, 16 student pairs performed weekly 60-minute home visits to 16 PALS. Instruments used for analyses were the McGill Quality of Life Questionnaire for the PALS; and the Draw-a-Person test and the Desiderative Questionnaire for the students. All instruments were applied twice: at the beginning (pre-first visit) and at the end of the study (post-12 visits). Results: After 12 weeks, there was not a significant change in total QOL or its five domains (existential wellbeing, physical wellbeing, psychological wellbeing, physical symptoms, and support). Existential wellbeing/support domains contributed most to the QOL of the PALS (pre-first visit and post-12 visits). Students showed anxiety/impulsivity but preserved adequacy to reality, logical thinking and global perception with regard to the PALS. We found that students were psychologically fragile in some subgroups/moments. Conclusions: Students' visits to PALS may contribute to the maintenance of the QOL of the patients. Additionally, visits, with psychological support for the students, seem safe and could contribute to the students' psychological maturation as health professionals. Additional psychological support may be necessary for some students in fragile subgroups/moments.

Decision-making in the respiratory care of amyotrophic lateral sclerosis: should home mechanical ventilation be used?

1993 ◽  
Vol 7 (4_suppl) ◽  
pp. 49-64 ◽  
Author(s):  
Edward Anthony Oppenheimer
Keyword(s):  
Decision Making ◽  
Mechanical Ventilation ◽  
Amyotrophic Lateral Sclerosis ◽  
Respiratory Function ◽  
Ventilatory Support ◽  
Respiratory Care ◽  
Home Mechanical Ventilation ◽  
Lateral Sclerosis ◽  
At Home

As respiratory function starts to deteriorate in those with amyotrophic lateral sclerosis, one of the principal questions that has to be answered is whether it is appropriate to provide ventilatory support. Although expensive, it is perfectly feasible to provide this at home, and this article examines many of the issues surrounding home mechanical ventilation.

First assessment at home of amyotrophic lateral sclerosis (ALS) patients by a nutrition network in the French region of Limousin

2012 ◽  
Vol 13 (6) ◽  
pp. 538-543 ◽  
Author(s):  
Pierre Jesus ◽  
Aude Massoulard ◽  
Benoit Marin ◽  
Marie Nicol ◽  
Olivier Laplagne ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Als Patients ◽  
Lateral Sclerosis ◽  
French Region ◽  
At Home

scholarly journals The Relationship of Lower-Limb Muscle Force to Walking Ability in Patients With Amyotrophic Lateral Sclerosis

1999 ◽  
Vol 79 (7) ◽  
pp. 672-681 ◽  
Author(s):  
Diane U Jette ◽  
Mary D Slavin ◽  
Patricia L Andres ◽  
Theodore L Munsat
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Lower Extremity ◽  
Muscle Force ◽  
Research Unit ◽  
Walking Ability ◽  
Lower Extremity Muscle ◽  
Relationship Of ◽  
The Relationship ◽  
Lateral Sclerosis ◽  
At Home

Abstract Background and Purpose. The purpose of this study was to determine the level of muscle force associated with ability to walk in the community without assistance, in the community with assistance, or at home only in individuals with amyotrophic lateral sclerosis (ALS). Subjects and Methods. Percentage of predicted maximal muscle force (%PMF) of lower-extremity muscles was determined, and walking ability was categorized in 118 patients with ALS during periodic visits to the Neuromuscular Research Unit. Data were derived from consecutive visits in which subjects demonstrated declines in walking ability. Means for %PMF of each muscle group and a limb average were calculated at each consecutive visit. Results. The mean lower-extremity average %PMF was: (1) 54.01% (SD=12.76%) for subjects who walked independently in the community and 50.19% (SD=14.38%) during the next visit when these same subjects required assistance in the community (difference=3.82%, 95% confidence interval [CI][=] 2.45−5.19);(2) 37.52% (SD=15.17%) during the last visit that subjects walked with assistance in the community and 32.18% (SD=13.83%) during the next visit when they walked only at home (difference=5.33%, 95% CI=3.61–7.06); and (3) 19.12% (SD=9.08%) during the visit when subjects were last able to ambulate at home versus 13.70% (SD=7.36%) when they became unable to walk (difference=5.42%, 95% CI=2.97−7.96). Conclusion and Discussion. The findings suggest there are required levels of lower-extremity muscle force for various categories of walking ability. Variations in forces within and between categories of walking ability, however, indicate the complexity of this relationship.

At Home and on Demand Mechanical Cough Assistance Program for Patients With Amyotrophic Lateral Sclerosis

2010 ◽  
Vol 89 (5) ◽  
pp. 401-406 ◽  
Author(s):  
Michele Vitacca ◽  
Mara Paneroni ◽  
Debora Trainini ◽  
Luca Bianchi ◽  
Giuliano Assoni ◽  
...  
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Assistance Program ◽  
On Demand ◽  
Lateral Sclerosis ◽  
At Home

Dying at home: a way of maintaining control for the person with ALS/M N D

1993 ◽  
Vol 7 (4_suppl) ◽  
pp. 65-68 ◽  
Author(s):  
Myrna K Moore
Keyword(s):  
Amyotrophic Lateral Sclerosis ◽  
Dying At Home ◽  
Lateral Sclerosis ◽  
At Home

Control is a key issue for patients with amyotrophic lateral sclerosis, and caring for them in their own homes is often an essential part of remaining in control. This goal can usually be achieved if all resources are correctly used.

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