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Ventilator dependence and expressions of need: A study of patients with amyotrophic lateral sclerosis in Japan [An article from: Social Science & Medicine]
Book Details
PublisherElsevier
ISBN / ASINB000RR7IYC
ISBN-13978B000RR7IY1
AvailabilityAvailable for download now
Sales Rank11,743,818
MarketplaceUnited States 🇺🇸
Description
This digital document is a journal article from Social Science & Medicine, published by Elsevier in . The article is delivered in HTML format and is available in your Amazon.com Media Library immediately after purchase. You can view it with any web browser.
Description:
This research examined the experience of Amyotrophic Lateral Sclerosis (ALS) patients who depend on an invasive mechanical ventilator in Japan. We investigated their difficulties in expressing their needs, their desires and wishes, and their sources of support and happiness. We examined the relationship between these factors and patient demographics, and hope as an indicator of successful adaptation to the illness experience (assessed by the Herth Hope Index). Interview results guided the formation of an anonymous questionnaire distributed to patients by mail. We interviewed 27 patients and their families and surveyed 157 respondents with a questionnaire. Most patients experienced multiple categories of difficulties, which correlated with reduced hope. More severe physical symptoms correlated with more emotional and social difficulties. Notable findings included a high prevalence of unalleviated pain, fear or experience of ventilator difficulties, and fear of burdening others. Having more sources of psychosocial support and happiness was associated with greater hope. Living at home was associated with fewer social difficulties. No patients claimed additional sources of support without claiming family or professional caregiver support, suggesting their mediation may be crucial in maintaining other social connections. Users of computer communication reported more sources of support and happiness and less frustration from difficulty expressing themselves. The most common reported desires, following a cure for ALS, related to the happiness of the patients' families, and a desire not to burden them. We also found that invasive mechanical ventilation (IMV) had been initiated emergently in 30.1% of patients without patient or family consent. Our results provide an insight into the world of this challenged population, elucidating the difficulties they face, and clarifying the role of support and other factors in maintaining hope. We identify concrete areas to which increased attention should be directed in patient care.
Description:
This research examined the experience of Amyotrophic Lateral Sclerosis (ALS) patients who depend on an invasive mechanical ventilator in Japan. We investigated their difficulties in expressing their needs, their desires and wishes, and their sources of support and happiness. We examined the relationship between these factors and patient demographics, and hope as an indicator of successful adaptation to the illness experience (assessed by the Herth Hope Index). Interview results guided the formation of an anonymous questionnaire distributed to patients by mail. We interviewed 27 patients and their families and surveyed 157 respondents with a questionnaire. Most patients experienced multiple categories of difficulties, which correlated with reduced hope. More severe physical symptoms correlated with more emotional and social difficulties. Notable findings included a high prevalence of unalleviated pain, fear or experience of ventilator difficulties, and fear of burdening others. Having more sources of psychosocial support and happiness was associated with greater hope. Living at home was associated with fewer social difficulties. No patients claimed additional sources of support without claiming family or professional caregiver support, suggesting their mediation may be crucial in maintaining other social connections. Users of computer communication reported more sources of support and happiness and less frustration from difficulty expressing themselves. The most common reported desires, following a cure for ALS, related to the happiness of the patients' families, and a desire not to burden them. We also found that invasive mechanical ventilation (IMV) had been initiated emergently in 30.1% of patients without patient or family consent. Our results provide an insight into the world of this challenged population, elucidating the difficulties they face, and clarifying the role of support and other factors in maintaining hope. We identify concrete areas to which increased attention should be directed in patient care.
