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

Abstract

Purpose : To provide a basis for improving hope, for amyotrophic lateral sclerosis patients who depend on tracheostomy invasive positive pressure ventilation during home health care, by investigating sources of psychological support and happiness as a coping resource. These factors followed by assessment of relationship to hope as an indicator of successful adaptation to the illness experience.Method : Initial surveys were conducted from which we developed a questionnaire that was mailed to respondents and returned anonymously. We obtained valid responses from 121 subjects for the written survey to ascertain sources of psychological support and sources of happiness. The level of hope was assessed using the Herth Hope Index (HHI), which measures desire to live and meaningfulness of life.Results : A majority of patients (90%) identified someone who provided psychological sup-port or some source of happiness. Only 13% of patients reported help from both 'family' and 'medical staff or professional caregivers,' 'friends or acquaintances' and other 'supporters,' while 22% of patients described not only 'environmental comforts,' but also 'human interactions,' 'learning information about ALS' and 'activities.' Users of computer communication reported more sources of support and happiness. Patients describing more sources had higher levels of hope.Conclusion : This research reveals that psychological support and happiness as coping Purpose : To provide a basis for improving hope, for amyotrophic lateral sclerosis patients who depend on tracheostomy invasive positive pressure ventilation during home health care, by investigating sources of psychological support and happiness as a coping resource. These factors followed by assessment of relationship to hope as an indicator of successful adaptation to the illness experience.Method : Initial surveys were conducted from which we developed a questionnaire that was mailed to respondents and returned anonymously. We obtained valid responses from 121 subjects for the written survey to ascertain sources of psychological support and sources of happiness. The level of hope was assessed using the Herth Hope Index (HHI), which measures desire to live and meaningfulness of life.Results : A majority of patients (90%) identified someone who provided psychological support or some source of happiness. Only 13% of patients reported help from both 'family' and 'medical staff or professional caregivers,' 'friends or acquaintances' and other 'supporters,' while 22% of patients described not only 'environmental comforts,' but also 'human interactions,' 'learning information about ALS' and 'activities.' Users of computer communication reported more sources of support and happiness. Patients describing more sources had higher levels of hope.Conclusion : This research reveals that psychological support and happiness as coping resources are structured from near sources such as family to outside sources such as activities and patients describing more outside sources had higher levels of hope. These patients will be able to promote the quality of life. These results show that care should include providing these effective resources such as relating to the outside and using a computer. This approach has the potential to help patients recovering or promoting a life-sustaining sense of hope.