Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Jun 8;14(6):e082398.
doi: 10.1136/bmjopen-2023-082398.

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

Yiqing Yu  1 , Lijuan Zeng  1 , Man Wu  1 , Chaoyang Li  1 , Yufei Qiu  1 , Jiali Liu  1 , Fen Yang #  2   3 , Peng Xia #  4   5   6
Affiliations

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

Yiqing Yu et al. BMJ Open. .

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.

Keywords: Motor neurone disease; Psychological Stress; QUALITATIVE RESEARCH.

PubMed Disclaimer

Conflict of interest statement

Competing interests: None declared.

Similar articles

See all similar articles

Cited by

References

    1. Appel V, Stewart SS, Smith G, et al. . A rating scale for Amyotrophic lateral sclerosis: description and preliminary experience. Ann Neurol 1987;22:328–33. 10.1002/ana.410220308 - DOI - PubMed
    1. Lai EC, Felice KJ, Festoff BW, et al. . Effect of recombinant human insulin-like growth factor-I on progression of ALS. A placebo-controlled study. Neurology 1997;49:1621–30. 10.1212/wnl.49.6.1621 - DOI - PubMed
    1. Haverkamp LJ, Appel V, Appel SH. Natural history of Amyotrophic lateral sclerosis in a database population. validation of a scoring system and a model for survival prediction. Brain 1995;118 (Pt 3):707–19. 10.1093/brain/118.3.707 - DOI - PubMed
    1. Hanhisuanto M, Solje E, Jokela M, et al. . Amyotrophic lateral sclerosis (ALS) in southwestern and Eastern Finland. Neuroepidemiology 2023;57:238–45. 10.1159/000531238 - DOI - PubMed
    1. Puopolo M, Bacigalupo I, Piscopo P, et al. . Prevalence of Amyotrophic lateral sclerosis in Latium region, Italy. Brain Behav 2021;11:e2378. 10.1002/brb3.2378 - DOI - PMC - PubMed

Publication types