TY - JOUR
T1 - Ventilator dependence and expressions of need
T2 - A study of patients with amyotrophic lateral sclerosis in Japan
AU - Hirano, Yuko Mandai
AU - Yamazaki, Yoshihiko
AU - Shimizu, Junichi
AU - Togari, Taisuke
AU - Bryce, Thomas James
N1 - Funding Information:
This research was made possible by a 2002 general grant from the Japan ALS Association's ALS Fund as well as a 2002 Basic Research Grant (A) from the Ministry of Education, Sports, Culture, Science and Technology. We express our heartfelt gratitude to everyone who contributed to or cooperated with this study, including, first and foremost, the courageous patients, their families, and caregivers, as well as members of the Japan ALS Association and the Department of Health Sociology at the University of Tokyo.
PY - 2006/3
Y1 - 2006/3
N2 - 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.
AB - 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.
KW - Amyotrophic lateral sclerosis
KW - Difficulties
KW - Expression
KW - Hope
KW - Invasive mechanical ventilator
KW - Japan
KW - Psychosocial support
UR - http://www.scopus.com/inward/record.url?scp=32044458197&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=32044458197&partnerID=8YFLogxK
U2 - 10.1016/j.socscimed.2005.08.015
DO - 10.1016/j.socscimed.2005.08.015
M3 - Article
C2 - 16263201
AN - SCOPUS:32044458197
SN - 0277-9536
VL - 62
SP - 1403
EP - 1413
JO - Ethics in Science and Medicine
JF - Ethics in Science and Medicine
IS - 6
ER -