It is well documented that amyotrophic lateral sclerosis (ALS) patients experience significant suffering upon loss of motor function; however, there has been hardly any study of how such patients face their disease and cope with it. The life-line method is a useful non-verbal, visual interview method for retrospectively assessing life experience over time. The goal of this study is to elucidate the factors governing coping and life re-structuring of ALS patients under tracheotomy invasive positive pressure ventilation (TPPV). We studied changes in and correlations among psychological well-being, demographic characteristics, and physical or psychosocial factors at three time points: pre-onset, psychological nadir, and time of study. Questionnaires were sent to 47 patients selected in a manner to ensure varied background factors, followed by semi-structured interviews at their residences based on questionnaire answers.
Results may be summarized as follows. First, psychological wellbeing dramatically worsened for all participants after onset, and although recovery is possible significant recovery is difficult. Second, while the psychological nadir was the period of physical and care-based uncertainty surrounding TPPV placement, the physical nadir was the time of the study, at which point patientsʼ physical function was lowest albeit stable, and with a stable care environment. Third, although the point of psychological nadir was marked by increasing physical subjective symptoms, decreasing sources of joy, decreasing hope, worsening of family economic status, and more people providing psychological support, at the time of the study subjective physical symptoms, hope and family economic status improved, together with more people providing psychological support. Fourth, at the time of the study there was a correlation between psychological wellbeing and use of Internet, email, and computer-assisted communication, hope, and sources of joy. Finally, subjects whose life-lines belonged to the groups of “No recovery,” “Recovery followed by second exacerbation,” or “Recovered but remained within negative range (limited recovery),” exhibited physical and psychosocial levels of wellbeing no better at the time of the study than during their nadir.
Our study suggests that assisting ALS patients in coping with their disease and re-constructing their lives consists of first attenuating factors impeding psychosocial recovery. At the same time, the factors we identify which can help promote recovery suggest concrete directions for patient support.