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Disempowering Language in Online Patient Education Materials for People with Type 1 Diabetes: Progress on a Summative Content Analysis
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Abstract
Objectives: Type 1 diabetes (T1D) is a complex chronic disease requiring ongoing self-management. Patient education aims to empower people to set goals and choose behaviors that accommodate patients’ lives and support optimal health outcomes. The use of disempowering language, however, can undermine self-management and psychosocial outcomes. Disempowering language includes stigmatizing, blaming, and condition-first words or phrases. The objective of this study is to assess T1D online patient education materials (PEMs) for the presence of disempowering language using summative content analysis. This poster reports the sampling protocol and data collection from Phase 1 of the content analysis.
Methods: Summative content analysis quantifies word frequencies (Phase 1) and explores the context of usage (Phase 2). We developed, tested, and refined a sampling protocol for Phase 1. Included PEMs were publicly available, specific to T1D, intended as patient education, available for download, and relevant to newly diagnosed patients. Advertisements, multimedia, resource lists, and manuals were excluded. Disempowering terms and term categories were selected from published diabetes language guidelines. The term categories included Control, Diabetic, Imperatives, Prevent, and Test. Voyant Tools was used to identify the disempowering terms within each PEM. A data collection tool was designed and used to measure how frequently terms were used in each PEM.
Results: Results of the sampling protocol produced 255 unique online PEMs from six Google search strings used to harvest the sample. Each PEM was screened by two independent researchers and variances were resolved by a third researcher. Twenty-nine PEMs were identified for inclusion. All PEMs in the sample used disempowering terms. The highest frequency was in the term category, Imperatives, representing 54% of the total number of disempowering terms used in the sample. Analysis of the results is ongoing.
Conclusions: The refined sampling protocol produced a small but robust data set of unique online PEMs representative of freely available materials patients would encounter online, when searching for general diagnosis information about T1D. The data collection tool used to measure the frequency of disempowering terms in the sample was effective, identifying disempowering terminology use across the sample. Disempowering terms from the data collection tool will be further assessed in Phase 2, which will contextualize the use of those terms and similarly identified words and phrases.
Description
This poster was presented on April 2, 2025 at The Institute for Public Health and Medicine's Public Health Summit 2025, held at the Northwestern Feinberg School of Medicine, Robert H. Lurie Medical Research Center, Chicago, IL.
Date
2025
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Keywords
Diabetes, Empowering language, Patient education