RESUMO
AIMS AND OBJECTIVES: This study aims to gain a comprehensive understanding of the illness experience of amyotrophic lateral sclerosis (ALS) patients in China and the meaning they attach to those experiences. BACKGROUND: ALS is a progressive and fatal neurodegenerative disorder that significantly impacts individuals and families. There is a large number of patients with ALS in China. However, little is known about how they live with ALS. DESIGN: Phenomenological qualitative research was performed among twenty people with ALS from the neurology department of a tertiary hospital in China. Colaizzi's method was used to analyse the participants' data. The Consolidated Criteria for Reporting Qualitative Research (COREQ) was used as a guideline to secure accurate and complete reporting of the study. RESULTS: We proposed three themes and eight subthemes on the illness experience of participants: (1) life countdown: 'my body was frozen' (body out of control and inward suffering); (2) family self-help: 'we kept an eye on each other' (family warmth and hardship, and supporting the supporter); and (3) reconstruction of life: 'what was the meaning of my life' (learning to accept, rebuilding self-worth, resetting the priority list and living in the moment). CONCLUSIONS: In the family self-help model, patients are prompted to turn from negative mentalities to search for meaning in life actively. Healthcare providers need to attach importance to the family self-help model to alleviate the pressure on medical resources. RELEVANCE TO CLINICAL PRACTICE: Healthcare providers should encourage patients to play a supportive role in the family and provide more care support and professional care knowledge guidance to caregivers, to promote the formation of the family self-help model which might help to improve the experience of patients and families.
