Purpose: To investigate the current difficulties, desires and their meanings in amyotrophic lateral sclerosis patients who depend on tracheostomy invasive positive pressure ventilation at home. Difficulties, desires and meanings were assessed in relationship to hope as an indicator of a will to live.
Method: We performed interview surveys, then used the results to craft a questionnaire that was mailed to potential respondents. We obtained valid responses from 121 anonymous subjects for the written survey. The level of hope was assessed using the Herth Hope Index (HHI), which measures desire to live and meaningfulness of life.
Results: Most patients suffered multiple kinds of daily emotional/spiritual, physical and social difficulties. Eighty percent of patients suffered frustration due to: difficulty communicating, fear that both family's burden of care and surrounding's burden, and physical pain due to remaining in the same physical position for prolonged periods of time all of which correlated with lower levels of hope. All patients described desires in some form. Eighty percent of patients described desires to: live at home, have a cure for ALS and decrease the burden of care on their families. These factors didn't correlate with higher levels of hope.
Conclusion: These results show that care should focus on coping difficulties and desires, not only which most patients describe, but also which correlated with the levels of hope. This double-pronged approach has the potential to help these patients living at home maintain or recover a life-sustaining sense of hope.
View full abstract