肌萎缩侧索硬化症患者居家护理知识需求调查及分析

Investigation and analysis of home care needs of patients with Amyotrophic Lateral Sclerosis

目的:调查肌萎缩侧索硬化症(AmyotrophicLateralSclerosis,ALS)患者及其主要照顾者的居家护理知识需求。方法:于2020年6月至2021年5月便利抽取北京某三级甲等医院及某罕见病慈善机构中心ALS患者及其主要照顾者为调查对象,采用一般资料调查表、对居家护理知识需求调查表、肌萎缩侧索硬化症功能评分量表进行调查并分析。结果:共回收有效问卷203份,其中包括101份ALS患者的调查问卷和102份主要照顾者的。ALS患者及其主要照顾者参加过居家护理知识培训的比例分别为23.76%和25.49%;获取居家护理知识途径均是首先以网络知识为主,其次是通过医务人员。相对ALS患者而言,主要照顾者对居家护理知识培训需求更高(P=0.032),单维度需求最高的是“呼吸道护理”。ALS患者及其主要照顾者希望获取知识的途径均是首先以视频播放为主,其次是微信公众号/微信群。结论:ALS患者及其主要照顾者对居家护理相关知识需求率较高,建议相关部门加大对其居家护理知识的宣教力度,尤其是呼吸道居家护理方面,可通过视频播放或微信公众号/微信群等新媒体推送方式进行培训。

Objective:To investigate the knowledge needs of home care in patients with Amyotrophic Lateral Sclerosis and care needs from their primary caregivers.Methods:From June 2020 to May 2021,eligible patients with Amyotrophic Lateral Sclerosis and their primary caregivers in a tertiary grade A hospital in Beijing were included in this study following convenient sampling.Information about patients and their primary caregivers were collected using questionnaires,and their care needs were collected using the home care knowledge demand questionnaire.Results:A total of 203 valid questionnaires were collected during the study period,including 101 patients with Amyotrophic Lateral Sclerosis and 102 primary caregivers.There were 23.76%an 25.49%of ALS patients and their primary caregivers participated in home care knowledge training,respectively.Based on participants’response,the main method in acquiring home care knowledge was online resources,followed by medical staff.Compared with patients with Amyotrophic Lateral Sclerosis,the primary caregivers had a higher demand for home care knowledge training(P=0.032),with"respiratory care"being scored as the highest.Meanwhile,patients with ALS and their primary caregivers reported that they preferred to acquire knowledge through video playback first,followed by WeChat public account/WeChat group.Conclusion:ALS patients and their primary caregivers have a high demand for knowledge on home care.It is recommended that relevant departments should increase the dissemination of health education on home care knowledge,especially contents on respiratory home care,which can be conducted through video or Wechat public account/Wechat group and other methods to meet patients’needs.