PDF(Pubmed)
Abstract：
Existing health care research, including serious illness research, often underrepresents individuals from historically marginalized communities. Capturing the nuanced perspectives of individuals around their health care communication experiences is difficult. New research strategies are needed that increase engagement of individuals from diverse backgrounds.
The aim of this study was to develop a mixed methods approach with qualitative online forums to better understand health communication experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals; older adults; and people with low income, disability, or serious illness.
We used a multiphase mixed methods, community-informed research approach to design study instruments and engage participants. We engaged a diverse group of collaborators with lived experience of navigating the health care system who provided feedback on instruments, added concepts for testing, and offered guidance on creating a safe experience for participants (phase 1). We conducted a national quantitative survey between April and May 2021 across intrapersonal, interpersonal, and systems-level domains, with particular focus on interpersonal communication between patients and clinicians (phase 2). We conducted two asynchronous, qualitative online forums, a technique used in market research, between June and August 2021, which allowed us to contextualize the learnings and test concepts and messages (phase 3). Using online forums allowed us to probe more deeply into results and hypotheses from the survey to better understand the \"whys\" and \"whats\" that surfaced and to test public messages to encourage action around health.
We engaged 46 community partners, including patients and clinicians from a Federally Qualified Health Center, to inform study instrument design. In the quantitative survey, 1854 adults responded, including 50.5% women, 25.2% individuals over 65 years old, and 51.9% individuals with low income. Nearly two-thirds identified as non-Hispanic white (65.7%), 10.4% identified as non-Hispanic Black, and 15.5% identified as Hispanic/Latino. An additional 580 individuals participated in online forums, including 60.7% women, 17.4% individuals over 65 years old, and 49.0% individuals with low income. Among the participants, 70.3% identified as non-Hispanic white, 16.0% as non-Hispanic Black, and 9.5% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the forums.
We achieved modest overrepresentation of people who were over 65 years old, identified as non-Hispanic Black, and had low income in our online forums. The size of the online forums (N=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Individuals who identify as Hispanic/Latino remained underrepresented, likely because the online forums were offered only in English. Overall, our findings demonstrate the feasibility of using the online forum qualitative approach in a mixed methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions.
The aim of this study was to develop a mixed methods approach with qualitative online forums to better understand health communication experiences of individuals, including people from groups historically marginalized such as Black and Latino individuals; older adults; and people with low income, disability, or serious illness.
We used a multiphase mixed methods, community-informed research approach to design study instruments and engage participants. We engaged a diverse group of collaborators with lived experience of navigating the health care system who provided feedback on instruments, added concepts for testing, and offered guidance on creating a safe experience for participants (phase 1). We conducted a national quantitative survey between April and May 2021 across intrapersonal, interpersonal, and systems-level domains, with particular focus on interpersonal communication between patients and clinicians (phase 2). We conducted two asynchronous, qualitative online forums, a technique used in market research, between June and August 2021, which allowed us to contextualize the learnings and test concepts and messages (phase 3). Using online forums allowed us to probe more deeply into results and hypotheses from the survey to better understand the \"whys\" and \"whats\" that surfaced and to test public messages to encourage action around health.
We engaged 46 community partners, including patients and clinicians from a Federally Qualified Health Center, to inform study instrument design. In the quantitative survey, 1854 adults responded, including 50.5% women, 25.2% individuals over 65 years old, and 51.9% individuals with low income. Nearly two-thirds identified as non-Hispanic white (65.7%), 10.4% identified as non-Hispanic Black, and 15.5% identified as Hispanic/Latino. An additional 580 individuals participated in online forums, including 60.7% women, 17.4% individuals over 65 years old, and 49.0% individuals with low income. Among the participants, 70.3% identified as non-Hispanic white, 16.0% as non-Hispanic Black, and 9.5% as Hispanic/Latino. We received rich, diverse input from our online forum participants, and they highlighted satisfaction and increased knowledge with engagement in the forums.
We achieved modest overrepresentation of people who were over 65 years old, identified as non-Hispanic Black, and had low income in our online forums. The size of the online forums (N=580) reflected the voices of 93 Black and 55 Hispanic/Latino participants. Individuals who identify as Hispanic/Latino remained underrepresented, likely because the online forums were offered only in English. Overall, our findings demonstrate the feasibility of using the online forum qualitative approach in a mixed methods study to contextualize, clarify, and expound on quantitative findings when designing public health and clinical communications interventions.
摘要：
背景：现有的医疗保健研究，包括重病研究,往往低估了历史上被边缘化社区的个人。很难捕捉个人围绕其医疗保健交流经历的细微差别观点。需要新的研究策略，以增加来自不同背景的个人的参与。
目的：本研究的目的是通过定性在线论坛开发一种混合方法方法，以更好地了解个人的健康交流经验，包括来自历史上被边缘化的群体的人，如黑人和拉丁裔人；老年人；和低收入人群，残疾,或严重的疾病。
方法：我们使用了多相混合方法，社区知情的研究方法来设计研究工具和参与参与者。我们聘请了一群不同的合作者，他们有丰富的医疗保健系统导航经验，他们提供了关于仪器的反馈，添加了测试概念，并为参与者提供了创建安全体验的指导（第一阶段）。我们在2021年4月至5月之间进行了一项全国性的定量调查，人际关系,和系统级域，特别关注患者和临床医生之间的人际沟通（第二阶段）。我们进行了两个异步，定性在线论坛，一种用于市场研究的技术，在2021年6月至8月之间，这使我们能够将学习和测试概念和消息的背景化（第3阶段）。使用在线论坛使我们能够更深入地调查调查结果和假设，以更好地了解浮出水面的“为什么”和“什么”，并测试公共信息以鼓励围绕健康采取行动。
结果：我们邀请了46个社区合作伙伴，包括来自联邦合格健康中心的患者和临床医生，为研究仪器设计提供信息。在定量调查中，1854名成年人回答说：包括50.5%的女性,65岁以上的人占25.2%,51.9%的低收入人群。近三分之二的人被认定为非西班牙裔白人（65.7%），10.4％被确定为非西班牙裔黑人，15.5%的人被认定为西班牙裔/拉丁裔。另有580人参加网上论坛,包括60.7%的女性，17.4%65岁以上的人，和49.0%的低收入个人。在参与者中，70.3%被认定为非西班牙裔白人，16.0%为非西班牙裔黑人，9.5%为西班牙裔/拉丁裔。我们收到了富人，来自我们在线论坛参与者的不同输入，他们强调了对参与论坛的满意度和更多的知识。
结论：我们在65岁以上的人群中取得了适度的代表性，被认定为非西班牙裔黑人,在我们的在线论坛上收入很低。在线论坛的规模（N=580）反映了93名黑人和55名西班牙裔/拉丁裔参与者的声音。被认定为西班牙裔/拉丁美洲人的个人人数仍然不足，可能是因为在线论坛仅以英语提供。总的来说,我们的研究结果表明，在混合方法研究中使用在线论坛定性方法的可行性，澄清，并阐述了设计公共卫生和临床沟通干预措施时的定量结果。
目的：本研究的目的是通过定性在线论坛开发一种混合方法方法，以更好地了解个人的健康交流经验，包括来自历史上被边缘化的群体的人，如黑人和拉丁裔人；老年人；和低收入人群，残疾,或严重的疾病。
方法：我们使用了多相混合方法，社区知情的研究方法来设计研究工具和参与参与者。我们聘请了一群不同的合作者，他们有丰富的医疗保健系统导航经验，他们提供了关于仪器的反馈，添加了测试概念，并为参与者提供了创建安全体验的指导（第一阶段）。我们在2021年4月至5月之间进行了一项全国性的定量调查，人际关系,和系统级域，特别关注患者和临床医生之间的人际沟通（第二阶段）。我们进行了两个异步，定性在线论坛，一种用于市场研究的技术，在2021年6月至8月之间，这使我们能够将学习和测试概念和消息的背景化（第3阶段）。使用在线论坛使我们能够更深入地调查调查结果和假设，以更好地了解浮出水面的“为什么”和“什么”，并测试公共信息以鼓励围绕健康采取行动。
结果：我们邀请了46个社区合作伙伴，包括来自联邦合格健康中心的患者和临床医生，为研究仪器设计提供信息。在定量调查中，1854名成年人回答说：包括50.5%的女性,65岁以上的人占25.2%,51.9%的低收入人群。近三分之二的人被认定为非西班牙裔白人（65.7%），10.4％被确定为非西班牙裔黑人，15.5%的人被认定为西班牙裔/拉丁裔。另有580人参加网上论坛,包括60.7%的女性，17.4%65岁以上的人，和49.0%的低收入个人。在参与者中，70.3%被认定为非西班牙裔白人，16.0%为非西班牙裔黑人，9.5%为西班牙裔/拉丁裔。我们收到了富人，来自我们在线论坛参与者的不同输入，他们强调了对参与论坛的满意度和更多的知识。
结论：我们在65岁以上的人群中取得了适度的代表性，被认定为非西班牙裔黑人,在我们的在线论坛上收入很低。在线论坛的规模（N=580）反映了93名黑人和55名西班牙裔/拉丁裔参与者的声音。被认定为西班牙裔/拉丁美洲人的个人人数仍然不足，可能是因为在线论坛仅以英语提供。总的来说,我们的研究结果表明，在混合方法研究中使用在线论坛定性方法的可行性，澄清，并阐述了设计公共卫生和临床沟通干预措施时的定量结果。
