Mount Sinai Health System, Institute for Health Care Delivery Science, New York, New York, USA.
Department of Population Health Science and Policy, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
J Eval Clin Pract. 2022 Feb;28(1):159-168. doi: 10.1111/jep.13609. Epub 2021 Aug 11.
The emotional health of patients with inflammatory bowel disease (IBD) is critical to self-management, but has been difficult to elucidate in routine care. Patients are often unsure how to communicate their preferences and concerns to their providers in ways that could directly inform shared decision making. Photovoice is an established research methodology used to give vulnerable patients a voice through photographic expression, but has not been previously used in gastroenterology or in IBD.
To determine the acceptability and feasibility of using Photovoice in an IBD clinic.
Patients with IBD took photos in response to open-ended prompts, participated in a focus group, and brainstormed ways to share their experience with clinicians.
Enrolled IBD patients received a digital camera, training on basic usage and 10 open-ended prompts related to management of their IBD. Participants completed one-hour in-depth interviews about their photos, which were audio-recorded and professionally transcribed. Three analysts coded transcripts for themes using qualitative analysis software QSR NVivo 11. A subset of patients participated in a focus group about their Photovoice experience. Gastroenterologists were interviewed, using patient photos as prompts, to evaluate feasibility of using Photovoice in the clinic.
Eleven patients completed the interviews, with five participating in the focus group. Patients shared and discussed a total of 118 photographs. We identified two major themes: disease burden and patient - provider communication. Five IBD physicians reviewed select patient photos and suggested ways to incorporate Photovoice into clinical practice.
Photovoice may be a feasible methodology for patients with IBD and acceptable for providers to use in a clinical setting.
Photovoice may help providers identify patient concerns and make their communication more patient-centred.
炎症性肠病（IBD）患者的情绪健康对自我管理至关重要，但在常规护理中很难阐明。患者通常不确定如何以能够直接为共同决策提供信息的方式向其提供者传达其偏好和关注点。影像叙事是一种已确立的研究方法，用于通过摄影表达赋予弱势患者声音，但尚未在胃肠病学或 IBD 中使用过。
确定在 IBD 诊所使用影像叙事的可接受性和可行性。
IBD 患者根据开放式提示拍摄照片，参加焦点小组，并集思广益，寻找与临床医生分享他们的经验的方法。
入组的 IBD 患者收到了一部数码相机，接受了有关基本使用和 10 个与 IBD 管理相关的开放式提示的培训。参与者完成了关于他们照片的一个小时深入访谈，这些访谈被录音并专业转录。三位分析师使用定性分析软件 QSR NVivo 11 对转录本进行主题编码。一部分患者参加了关于他们的影像叙事体验的焦点小组。使用患者的照片作为提示，对胃肠病学家进行了访谈，以评估在诊所中使用影像叙事的可行性。
11 名患者完成了访谈，其中 5 名参加了焦点小组。患者总共分享和讨论了 118 张照片。我们确定了两个主要主题：疾病负担和医患沟通。五名 IBD 医生审查了精选的患者照片，并提出了将影像叙事纳入临床实践的方法。
影像叙事可能是 IBD 患者的一种可行方法，也可以接受提供者在临床环境中使用。
影像叙事可以帮助提供者识别患者的关注点，并使他们的沟通更加以患者为中心。
