脊髓损伤神经源性肠道功能障碍患者主要照顾者全程参与肠道管理需求的质性研究

doi:10.3969/j.issn.1006-9771.2025.08.013

摘要/Abstract

摘要：

目的了解脊髓损伤神经源性肠道功能障碍患者的主要照顾者对全程参与患者肠道管理的需求。

方法采用目的抽样法，选取江苏省人民医院2024年1月至12月收治的9例脊髓损伤神经源性肠道功能障碍患者的主要照顾者为研究对象，通过面对面的半结构化访谈，采用Colaizzi 7步分析法分析、归纳和提炼主题。

结果共提炼出3个主题和8个亚主题：肠道管理专业知识与技能标准的需求(肠道训练知识缺乏、获取知识能力不足、医疗机构标准不一)；参与肠道训练躯体能力与决策能力的需求(参与精力不足、决策行为单一、过度依赖医护人员)；以及对治疗获益渴望与心理自信建设的需求(担心患者预后、担心患者过度依赖药物)。

结论临床医护人员应关注神经源性肠道功能障碍患者的主要照顾者全程参与患者肠道管理的实际需求及面临的困难，构建针对性的培训方案，加强主要照顾者技能及知识培训，提升他们的自主性和责任感，从而更好实现康复目标。

关键词: 脊髓损伤, 神经源性肠道功能障碍, 主要照顾者, 全程肠道管理, 护理, 质性研究

Abstract:

Objective To investigate the needs of the main caregivers of patients with spinal cord injury following neurogenic bowel dysfunction to participate in the whole process of intestinal management.

Methods Nine main caregivers of patients with spinal cord injury in Jiangsu Province Hospital from January to December, 2024 were selected with objective sampling method. They were investigated face-to-face semi-structured in-depth interviews, and the data were analyzed, summarized and extracted by Colaizzi 7-step analysis method.

Results Three themes and eight sub-themes were extracted: the needs of professional knowledge and skills standards in intestinal management (lack of intestinal training knowledge, lack of ability to acquire knowledge and different standards of medical institutions); the needs of physical ability and decision making ability participating in intestinal training (lack of participation, single decision-making behavior, excessive dependence on medical personnel); the desire for therapeutic benefits and the needs for building psychological confidence (concerns about the patient's prognosis, overdependence on medication).

Conclusion Clinical medical staff should pay attention to the actual needs and difficulties faced by the main caregivers of patients with neurogenic bowel dysfunction to participate in the entire intestinal management, and construct targeted training programs, strengthen the skills and knowledge training, to enhance their autonomy and responsibility, to achieve the rehabilitation goal better.

Key words: spinal cord injury, neurogenic bowel dysfunction, primary caregiver, whole intestinal management, nurse, qualitative study

中图分类号:

R651.2

任良湘, 梅培培, 毛二莉, 汤一帆, 王雪, 叶义清. 脊髓损伤神经源性肠道功能障碍患者主要照顾者全程参与肠道管理需求的质性研究[J]. 《中国康复理论与实践》, 2025, 31(8): 965-971.

REN Liangxiang, MEI Peipei, MAO Erli, TANG Yifan, WANG Xue, YE Yiqing. Needs of full participation in intestinal management for primary caregivers of patients with neurogenic bowel dysfunction after spinal cord injury: a qualitative study[J]. Chinese Journal of Rehabilitation Theory and Practice, 2025, 31(8): 965-971.

图/表 1

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主要照顾者						患者
编号	性别	年龄	文化程度	与患者的关系	居住地	性别	年龄/岁
P1	女	55	本科	母子	城市	男	30
P2	女	62	高中	夫妻	城市	男	66
P3	男	67	小学	父子	农村	男	32
P4	女	55	小学	夫妻	城市	男	56
P5	女	59	小学	夫妻	城市	男	57
P6	女	60	大专	夫妻	城市	男	61
P7	女	58	大学	夫妻	城市	男	58
P8	女	42	小学	夫妻	农村	男	42
P9	男	59	小学	亲戚	农村	男	57