Abstract：
BACKGROUND: Effective communication is essential for high-quality multiple sclerosis (MS)-related healthcare, but significant knowledge and practice gaps remain in this area. The aim of this study was to explore facilitators and barriers of communication about MS reported by members of the MS community.
METHODS: We conducted an exploratory mixed method study analysing self-reported facilitators and barriers to communication among MS community members participating in a free international online course about MS (called Understanding MS) who commented on an optional discussion board. We quantitatively compared commenters with course participants who did not comment and, among commenters, compared health information consumers (people with MS, caregivers) and suppliers (healthcare providers, service providers, researchers) using chi square and t-tests. We evaluated free text discussion board responses for emergent themes, comparing and contrasting consumer and supplier responses.
RESULTS: We found that the sociodemographic characteristics of commenters (n = 262) were similar to course participants overall including age, sex and MS community role. However, among commenters, consumers (n = 152) were about 9 years older than suppliers (n = 57) on average (mean age consumers 52.9 years; suppliers 44.0 years p<0.001), and were less likely to have a university degree (p = 0.004) or live in Australia (the course host country representing almost 60% of the cohort; p<0.001). Nonetheless, consumers and suppliers listed similar facilitators for communication about MS: honesty, kindness/empathy/compassion, openness, and effective listening. Consumers further prioritized clarity and patience. Consumers were also more likely to list barriers to communication, commonly listing the following barriers: encountering a lack of knowledge about MS, the invisible symptoms of MS, uncertainty about the appropriate amount of communication, and concern about being perceived as complaining and/or burdening others. Finally, consumers also discussed communication as a means to educate others about MS.
CONCLUSIONS: Effective communication remains a challenge in the MS community, particularly between health information suppliers and health information consumers. The results of this exploratory study highlight areas that should be considered when developing communication strategies for MS community members. A larger confirmatory study of MS health information consumers and suppliers that uses focus groups and individual interviews could be conducted to further explore these emerging themes.
METHODS: We conducted an exploratory mixed method study analysing self-reported facilitators and barriers to communication among MS community members participating in a free international online course about MS (called Understanding MS) who commented on an optional discussion board. We quantitatively compared commenters with course participants who did not comment and, among commenters, compared health information consumers (people with MS, caregivers) and suppliers (healthcare providers, service providers, researchers) using chi square and t-tests. We evaluated free text discussion board responses for emergent themes, comparing and contrasting consumer and supplier responses.
RESULTS: We found that the sociodemographic characteristics of commenters (n = 262) were similar to course participants overall including age, sex and MS community role. However, among commenters, consumers (n = 152) were about 9 years older than suppliers (n = 57) on average (mean age consumers 52.9 years; suppliers 44.0 years p<0.001), and were less likely to have a university degree (p = 0.004) or live in Australia (the course host country representing almost 60% of the cohort; p<0.001). Nonetheless, consumers and suppliers listed similar facilitators for communication about MS: honesty, kindness/empathy/compassion, openness, and effective listening. Consumers further prioritized clarity and patience. Consumers were also more likely to list barriers to communication, commonly listing the following barriers: encountering a lack of knowledge about MS, the invisible symptoms of MS, uncertainty about the appropriate amount of communication, and concern about being perceived as complaining and/or burdening others. Finally, consumers also discussed communication as a means to educate others about MS.
CONCLUSIONS: Effective communication remains a challenge in the MS community, particularly between health information suppliers and health information consumers. The results of this exploratory study highlight areas that should be considered when developing communication strategies for MS community members. A larger confirmatory study of MS health information consumers and suppliers that uses focus groups and individual interviews could be conducted to further explore these emerging themes.
摘要：
背景：有效的沟通对于与多发性硬化症（MS）相关的高质量医疗保健至关重要，但这方面的知识和实践差距很大。这项研究的目的是探索MS社区成员报告的MS的促进者和沟通障碍。
方法：我们进行了一项探索性混合方法研究，分析了参加有关MS（称为了解MS）的免费国际在线课程的MS社区成员之间自我报告的主持人和沟通障碍，该课程在可选的讨论板上发表了评论。我们定量比较了评论者和未发表评论的课程参与者，在评论者中，比较健康信息消费者(患有MS的人，护理人员)和供应商(医疗保健提供者，服务提供商,研究人员)使用卡方检验和t检验。我们评估了免费文本讨论板对紧急主题的回应，比较和对比消费者和供应商的反应。
结果：我们发现，评论者（n=262）的社会人口统计学特征与课程参与者总体相似，包括年龄，性别和MS社区角色。然而,在评论者中，消费者(n=152)平均比供应商(n=57)大9岁(平均年龄消费者52.9岁；供应商44.0岁p<0.001)，并且不太可能拥有大学学位（p=0.004）或居住在澳大利亚（课程东道国占队列的近60％；p<0.001）。尽管如此，消费者和供应商列出了类似的促进者，用于沟通MS：诚实，善良/同情/同情，开放性,有效的倾听。消费者进一步优先考虑清晰度和耐心。消费者也更有可能列出沟通障碍，通常列出以下障碍：遇到缺乏关于MS的知识，MS的隐形症状，关于适当通信量的不确定性，并担心被视为抱怨和/或给他人带来负担。最后,消费者还讨论了交流作为教育他人有关MS的一种手段。
结论：有效的沟通仍然是MS社区的挑战，特别是在健康信息提供者和健康信息消费者之间。这项探索性研究的结果强调了在为MS社区成员制定沟通策略时应考虑的领域。可以使用焦点小组和个人访谈对MS健康信息消费者和供应商进行更大的验证性研究，以进一步探索这些新兴主题。
方法：我们进行了一项探索性混合方法研究，分析了参加有关MS（称为了解MS）的免费国际在线课程的MS社区成员之间自我报告的主持人和沟通障碍，该课程在可选的讨论板上发表了评论。我们定量比较了评论者和未发表评论的课程参与者，在评论者中，比较健康信息消费者(患有MS的人，护理人员)和供应商(医疗保健提供者，服务提供商,研究人员)使用卡方检验和t检验。我们评估了免费文本讨论板对紧急主题的回应，比较和对比消费者和供应商的反应。
结果：我们发现，评论者（n=262）的社会人口统计学特征与课程参与者总体相似，包括年龄，性别和MS社区角色。然而,在评论者中，消费者(n=152)平均比供应商(n=57)大9岁(平均年龄消费者52.9岁；供应商44.0岁p<0.001)，并且不太可能拥有大学学位（p=0.004）或居住在澳大利亚（课程东道国占队列的近60％；p<0.001）。尽管如此，消费者和供应商列出了类似的促进者，用于沟通MS：诚实，善良/同情/同情，开放性,有效的倾听。消费者进一步优先考虑清晰度和耐心。消费者也更有可能列出沟通障碍，通常列出以下障碍：遇到缺乏关于MS的知识，MS的隐形症状，关于适当通信量的不确定性，并担心被视为抱怨和/或给他人带来负担。最后,消费者还讨论了交流作为教育他人有关MS的一种手段。
结论：有效的沟通仍然是MS社区的挑战，特别是在健康信息提供者和健康信息消费者之间。这项探索性研究的结果强调了在为MS社区成员制定沟通策略时应考虑的领域。可以使用焦点小组和个人访谈对MS健康信息消费者和供应商进行更大的验证性研究，以进一步探索这些新兴主题。
