Center for Health Policy and Inequalities Research, Duke University, Durham, North Carolina, USA.
University of Arkansas for Medical Sciences, Little Rock, Arkansas, USA.
Ear Hear. 2023;44(5):1078-1087. doi: 10.1097/AUD.0000000000001348. Epub 2023 Mar 24.
The aim of this study is to present an explanatory model of hearing loss in the Bering Strait region of Alaska in order to contextualize the results of a cluster randomized trial and propose implications for regional hearing-related health care.
To promote ecological validity, or the generalizability of trial findings to real world experiences, qualitative methods (focus groups and interviews) were used within a mixed methods cluster randomized trial evaluating school hearing screening and follow-up processes in 15 communities in the Bering Strait region of Alaska. Focus groups were held between April and August 2017, and semistructured interviews were conducted between December 2018 and August 2019. Convenience sampling was used for six of the 11 focus groups to capture broad community feedback. Purposive sampling was used for the remaining five focus groups and for all interviews to capture a variety of experiences with hearing loss. Audio recordings of focus groups and interviews were transcribed, and both notes and transcripts were deidentified. All notes and transcripts were included in the analysis. The constant comparative method was used to develop a codebook by iteratively moving between transcripts and preliminary themes. Researchers then used this codebook to code data from all focus groups and interviews using qualitative analysis software (NVIVO 12, QSR International) and conducted thematic analyses to distill the findings presented in this article.
Participants in focus groups (n = 116) and interviews (n = 101) shared perspectives in three domains: etiology, impact, and treatment of hearing loss. Regarding etiology, participants emphasized noise-induced hearing loss but also discussed infection-related hearing loss and various causes of ear infections. Participants described the impact of hearing loss on subsistence activities, while also detailing social, academic, and economic consequences. Participants described burdensome treatment pathways that are repetitive and often travel and time intensive. Communication breakdowns within these pathways were also described. Some participants spoke positively of increased access via onsite hearing health care services in "field clinics" as well as via telemedicine services. Others described weaknesses in these processes (infrequent field clinics and communication delays in telemedicine care pathways). Participants also described home remedies and stigma surrounding the treatment for hearing loss.
Patient-centered health care requires an understanding of context. Explanatory models of illness are context-specific ways in which patients and their networks perceive and describe the experience of an illness or disability. In this study, we documented explanatory models of hearing loss to foster ecological validity and better understand the relevance of research findings to real-life hearing-related experiences. These findings suggest several areas that should be addressed in future implementation of hearing health care interventions elsewhere in rural Alaska, including management of repetitious treatments, awareness of infection-mediated hearing loss, mistrust, and communication breakdowns. For hearing-related health care in this region, these findings suggest localized recommendations for approaches for prevention and treatment. For community-based hearing research, this study offers an example of how qualitative methods can be used to generate ecologically valid (i.e., contextually grounded) findings.
本研究旨在提出一个关于阿拉斯加白令海峡地区听力损失的解释模型，以便将一项群组随机对照试验的结果置于特定背景下，并为该地区与听力相关的健康护理提出启示。
为了提高试验结果的生态有效性，即推广到现实世界经验的可推广性，在一项评估阿拉斯加白令海峡地区 15 个社区学校听力筛查和随访过程的群组随机对照试验中，采用了定性方法（焦点小组和访谈）。焦点小组于 2017 年 4 月至 8 月间进行，半结构式访谈于 2018 年 12 月至 2019 年 8 月间进行。便利抽样用于 11 个焦点小组中的 6 个，以获取广泛的社区反馈。其余 5 个焦点小组和所有访谈均采用目的抽样，以获取各种听力损失的经验。焦点小组和访谈的音频记录被转录，笔记和抄本均被匿名处理。所有笔记和抄本都包含在分析中。通过在转录本和初步主题之间反复移动，使用恒定性比较方法开发了一个代码本。研究人员随后使用该代码本对所有焦点小组和访谈的数据进行编码，使用定性分析软件（NVIVO 12，QSR International），并进行主题分析，以提炼本文中呈现的发现。
焦点小组（n=116）和访谈（n=101）的参与者在三个领域分享了观点：听力损失的病因、影响和治疗。关于病因，参与者强调了噪声引起的听力损失，但也讨论了与感染相关的听力损失和各种耳部感染的原因。参与者描述了听力损失对生计活动的影响，同时详细说明了社会、学术和经济后果。参与者描述了繁琐的治疗途径，这些途径往往是重复的，而且经常需要旅行和时间。这些途径中的沟通障碍也被描述出来。一些参与者对“实地诊所”提供的现场听力保健服务以及远程医疗服务增加了可及性表示肯定，而另一些参与者则描述了这些流程中的弱点（实地诊所不频繁，远程医疗护理途径中的沟通延迟）。参与者还描述了听力损失治疗的家庭疗法和耻辱感。
以患者为中心的医疗保健需要了解背景。疾病的解释模型是患者及其网络感知和描述疾病或残疾经历的特定方式。在这项研究中，我们记录了听力损失的解释模型，以促进生态有效性，并更好地理解研究结果与现实生活中的听力相关经验的相关性。这些发现表明，在阿拉斯加农村地区未来实施听力保健干预措施时，应关注几个方面，包括治疗的重复性管理、对感染引起的听力损失的认识、不信任和沟通障碍。对于该地区的听力保健，这些发现为预防和治疗建议提供了本地化的建议。对于社区为基础的听力研究，本研究提供了一个例子，说明如何使用定性方法产生生态有效性（即与背景相关）的发现。
