Exploring amyotrophic lateral sclerosis patients’ experiences of psychological distress during the disease course in China: a qualitative study

Abstract

Objective This study aims to explore the psychological distress course of Chinese amyotrophic lateral sclerosis (ALS) patients after the onset of the disease and to provide targeted nursing guidance.Design The interview content was analysed qualitatively. We used seven steps of Colaizzi’s method to analyse the participants’ data.Setting Wuhan, China, Traditional Chinese Medicine Hospital.Participants A semistructured face-to-face interview were performed among 22 people with ALS from the motor neuron disease rehabilitation centre of a tertiary Chinese medicine hospital in China.Result This study included a total of 22 participants, from whom three main themes regarding the psychological distress trajectory of ALS patients were extracted from the interview data: ‘Time begins to run out’ include tormented and restless waiting and shock and doubt in ALS disease confirmation, ‘Family out of control’ include the burden of stigma and function loss, the burden of missing family roles, the burden of marriage’s emotional needs and the burden of offspring health, ‘Way forward’ include struggle between live and death and struggle between quality of life and the value of life.Conclusion This study outlines the psychologically distressing journey of ALS patients. Studies have pointed out the need for targeted care to address patients’ various sources of psychological distress to improve their quality of life and coping ability, increase their psychological resilience and reconstruct their life beliefs.