Purpose: It is well documented that amyotrophic lateral sclerosis (ALS) patients experience significant suffering upon loss of motor function; however, there has been extremely little 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. Further, longitudinal research is required to improve validity and deepen understanding of subjects. The purpose of the current study is to use elucidate psychological changes over time and related factors in ALS patients under Tracheostomy, Invasive Positive Pressure Ventilation (TPPV).
Methods: Questionnaires were sent 3 years following the previous survey to 22 ALS patients using TPPV selected in a manner to ensure varied background factors. These questionnaires were followed by semi-structured interviews at their residences or other locations based on questionnaire answers.
Results:The psychological status of all subjects deteriorated after onset, but subsequent patterns diverged into main patterns: steady improvement following the initial deterioration, first signs of recovery while still in the “worsened or stagnated” state, initial recovery followed by a second deterioration, and a persistent “worsened or stagnated” state. The following qualitative factor domains affected psychological status for 3 years in both positive and negative ways: lifestyle factors (the most influential), personal relationships, disease coping, physical impairment and symptoms, roles, experience, and economic factors. These seven domains were divided into 12 positive or negative factors each, some of which were in opposition to each other. Analysis revealed different factors operating on each of the main psychological status patterns. The recovery of psychological status was spurred by adequate medical or nursing services, maintaining sources of enjoyment or meaning, and ascribing positive meaning to disease and cognitive coping; the initial recovery was spurred by support from other people; the recovery was impeded by worsening physical impairment and symptoms, and inadequate medical or nursing services; the initial recovery was impeded by inadequate medical or nursing services, and anxiety about caregiving burden on family.
Conclusions: It is inevitable that ALS patients using TPPV will experience psychological fluctuations. Given this fact, aiding in the task of coping and re-constructing their lives consists of mitigating factors which impede psychological recovery, and enhancing factors which promote recovery.