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Academic Journal of Medicine & Health Sciences, 2026, 7(1); doi: 10.25236/AJMHS.2026.070113.

From the Perspective of Medical Staff: Attitudes toward Pain and End-of-Life Issues in Children with Locked-in Syndrome

Author(s)

Chunyan Yang1,2, Jianan Xie1,2, Meiqi Li3, Wangshan Huang1, Steven Laureys3,4, Haibo Di1

Corresponding Author:
Haibo Di
Affiliation(s)

1International Vegetative State and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China

2School of Nursing, Hangzhou Normal University, Hangzhou, China

3Hangzhou First People's Hospital, Hangzhou, China

4Joint International Research Unit on Consciousness, CERVO Brain Research Centre, Laval University, Quebec, Canada

Abstract

Locked-in syndrome (LIS), caused by brainstem lesions or severe neurological disorders, is characterized by preserved consciousness and cognition despite complete loss of motor function. In the context of pain management and end-of-life decision-making for pediatric LIS patients, healthcare professionals face ethical challenges shaped by divergent viewpoints. This study examines whether professional medical background influences such perspectives. We surveyed healthcare professionals across six provinces and municipalities in China between July 2023 and November 2024 to investigate their attitudes toward the ethics of life-sustaining treatment in LIS, yielding 628 valid responses. Chi‑square tests and binary logistic regression were used for statistical analysis. The mean age of respondents was 33 years; most were young adults (44.4%) and female (64.5%). Professional composition included nurses (26.8%), neurologists or neuroscience researchers (21.4%), other clinicians (19.8%), rehabilitation therapists (15.2%), other staff (14.2%), and medical students (1.7%). Most respondents (87.3%) agreed that children with LIS can perceive pain. Binary logistic regression revealed that the number of children respondents had was significantly associated with their judgment of pain perception in pediatric LIS. Regarding the withdrawal of life-sustaining treatment, 73.6% of respondents expressed negative attitudes. Regression analysis showed that monthly income was significantly associated with attitudes toward treatment withdrawal. Chi‑square tests revealed a significant association between pain perception and approval of treatment withdrawal from a third‑person perspective (χ² = 7.152, p = 0.007), whereas no such association was observed from a first‑person perspective. Further regression models demonstrated that monthly income, professional role, and number of children were significantly associated with the willingness to sustain life‑support treatment. Healthcare professionals’ views on pain perception and life-sustaining treatment for pediatric LIS are influenced by their personal characteristics. These attitudinal differences reflect both ethical values and clinical judgments regarding the subjective experience of pediatric patients. Ethical decision‑making therefore requires comprehensive and multi‑stakeholder deliberation.

Keywords

Locked-in Syndrome; Children; Pain; Life-sustaining treatment; Ethics

Cite This Paper

Chunyan Yang, Jianan Xie, Meiqi Li, Wangshan Huang, Steven Laureys, Haibo Di. From the Perspective of Medical Staff: Attitudes toward Pain and End-of-Life Issues in Children with Locked-in Syndrome. Academic Journal of Medicine & Health Sciences (2026), Vol. 7, Issue 1: 87-94. https://doi.org/10.25236/AJMHS.2026.070113.

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