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1.  Meditation Training for People with Amyotrophic Lateral Sclerosis and Their Caregivers 
Abstract
Objectives: Amyotrophic lateral sclerosis (ALS) is a progressive and fatal neurodegenerative disease that is clinically characterized by progressive weakness leading to death by respiratory insufficiency, usually within three years. Although the patient's intellect and personality usually remain unimpaired, as the disease progresses, the patient becomes immobile, develops wasting, and speech becomes impaired, often resulting in social isolation and a high degree of psychological suffering. Mindfulness meditation has proven to be effective technique for reducing distress in many chronic diseases. However, to date, no study has investigated the effect of mindfulness meditation on patients with ALS.
Design: A mindfulness meditation training program for ALS patients needs to consider the particularities of ALS symptoms, including the loss of muscular functions and difficulties in respiration, together with the subsequent emotional impairments. With these caveats in mind, a modified protocol, based on original mindfulness meditation interventions, has been created specifically for the ALS population.
This article describes the protocol and preliminary results.
doi:10.1089/acm.2013.0268
PMCID: PMC3994974  PMID: 24328393
2.  Respiratory function of people with amyotrophic lateral sclerosis and caregiver distress level: a correlational study 
Background
Amyotrophic Lateral Sclerosis (ALS) is a rare, fatal neurodegenerative disorder with no curative treatment characterized by degeneration of motor neurons involving a progressive impairment of motor and respiratory functions. Most patients die of ventilator respiratory failure. Caregivers have a great influence on the patient”s quality of life as well as on the quality of care. Home influence of the caregiver on patient care is notable. To date, no study has investigated how psychological issues of caregivers would influence respiratory variables of ALS patients. The study aimed at finding out if there is a relationship between the respiratory function of ALS patients and the level of distress of their caregivers.
Methods
A cross-sectional study was conducted to investigate respiratory issues (PCF and FVC) and the perception of social support of ALS patients. Caregivers filled questionnaires about trait anxiety, depression, and burden of care. Forty ALS patients and their caregivers were recruited.
Results
FVC and PCF were positively related to patient perception of social support and negatively related to caregiver anxiety, depression, and burden.
Discussion
The distress of ALS caregivers is related to patient respiratory issues. The first and more intuitive explanation emphasizes the impact that the patient’s clinical condition has with respect to the caregiver. However, it is possible to hypothesize that if caregivers feel psychologically better, their patient’s quality of life improves and that a condition of greater well-being and relaxation could also increase ventilatory capacity. Furthermore, care management could be carried out more easily by caregivers who pay more attention to the patient's respiratory needs.
Conclusion
Patient perception of social support and caregiver distress are related to respiratory issues in ALS.
doi:10.1186/1751-0759-6-14
PMCID: PMC3472192  PMID: 22721255
Quality of life; Bio-psycho-social interaction; Amyotrophic lateral sclerosis; Non-invasive ventilation; Health care; Caregivers

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