“I feel like I'm being talked to like an equal”: Diabetes language matters to adults with diabetes, a mixed-methods study

IF 3.2 3区医学 Q2 ENDOCRINOLOGY & METABOLISM

Diabetic Medicine Pub Date : 2024-08-16 DOI:10.1111/dme.15424

Eloise Litterbach, Elizabeth Holmes-Truscott, Shikha Gray, Jennifer Halliday, Renza Scibilia, Timothy Skinner, Jane Speight

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Abstract

Aim

To explore reactions to and preferences for words/phrases used in communications about diabetes among adults with diabetes and parents of children with diabetes.

Methods

Eligible adults (aged 18+ years) living with diabetes, or parenting a child with diabetes, were recruited via social media to complete an online cross-sectional, mixed-methods survey. Study-specific items were used to examine 22 commonly used diabetes words/phrases in terms of participants' cognitive perceptions (‘helpful’, ‘respectful’, ‘accurate’, ‘harmful’, ‘judgmental’ and ‘inaccurate’) and emotional reactions (‘optimistic’, ‘motivated’, ‘supported’, ‘understood’, ‘offended’, ‘blamed’, ‘distressed’ and ‘angry’). Open-ended questions invited further feedback on (non-)preferred language and its impact(s). Data were analysed using descriptive statistics and inductive thematic analysis.

Results

Participants (N = 865) included adults with diabetes (type 1: n = 519; type 2: n = 180, other types: n = 48) and parents of children with diabetes (n = 118). Words/phrases most commonly associated with negative perceptions/emotional responses were ‘non-compliant’ (60% judgmental; 47% felt blamed) and ‘…good/bad’ (54% judgmental; 43% blamed). Positive perceptions were reported for ‘managing diabetes’ (73% helpful, 47% felt understood), ‘person with diabetes’ (72% respectful; 49% understood), ‘…within/outside target range’ (60% helpful, 44% understood), and ‘condition’ (58% respectful; 43% understood). Participants' qualitative responses illuminated perceptions, experiences and impacts across five themes: (1) accuracy and simplicity; (2) identity; (3) blame, judgement and stigma; (4) respect and trust and; (5) support, hope and feeling understood. Themes were consistent across diabetes types.

Conclusions

These findings provide novel evidence into (non-)preferred, and potential (negative and positive) impacts of, commonly used diabetes words/phrases, supporting the international #LanguageMatters movement.

Abstract Image

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"我感觉自己被平等地对待"：糖尿病语言对成年糖尿病患者的影响，一项混合方法研究。

目的：探讨成年糖尿病患者和糖尿病患儿家长对糖尿病传播中使用的词汇/短语的反应和偏好：通过社交媒体招募符合条件的成年糖尿病患者（18 岁以上）或糖尿病患儿家长，完成一项在线横断面混合方法调查。调查采用特定研究项目，从参与者的认知感知（"有益的"、"尊重的"、"准确的"、"有害的"、"评判的 "和 "不准确的"）和情绪反应（"乐观的"、"积极的"、"支持的"、"理解的"、"冒犯的"、"责备的"、"痛苦的 "和 "愤怒的"）方面对 22 个常用糖尿病词汇/短语进行了研究。开放式问题还请与会者就（非）首选语言及其影响提供进一步反馈。采用描述性统计和归纳主题分析法对数据进行了分析：参与者（N = 865）包括成人糖尿病患者（1 型：n = 519；2 型：n = 180；其他类型：n = 48）和儿童糖尿病患者的父母（n = 118）。最常与负面看法/情绪反应相关的词语/短语是 "不遵守规定"（60%的人做出判断；47%的人感到自责）和"......好/坏"（54%的人做出判断；43%的人感到自责）。对 "管理糖尿病"（73% 有帮助，47% 感觉被理解）、"糖尿病患者"（72% 尊重；49% 理解）、"...在目标范围内/外"（60% 有帮助，44% 理解）和 "病情"（58% 尊重；43% 理解）的看法是积极的。参与者的定性回答揭示了五个主题的看法、经验和影响：(1) 准确性和简单性；(2) 身份；(3) 指责、评判和污名化；(4) 尊重和信任；(5) 支持、希望和感觉被理解。不同糖尿病类型的主题是一致的：这些研究结果提供了新的证据，证明了糖尿病常用词/短语的（非）首选性和潜在（消极和积极）影响，支持了国际 #LanguageMatters 运动。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Diabetic Medicine 医学-内分泌学与代谢

CiteScore

7.20

自引率

5.70%

发文量

229

审稿时长

3-6 weeks

期刊介绍： Diabetic Medicine, the official journal of Diabetes UK, is published monthly simultaneously, in print and online editions. The journal publishes a range of key information on all clinical aspects of diabetes mellitus, ranging from human genetic studies through clinical physiology and trials to diabetes epidemiology. We do not publish original animal or cell culture studies unless they are part of a study of clinical diabetes involving humans. Categories of publication include research articles, reviews, editorials, commentaries, and correspondence. All material is peer-reviewed. We aim to disseminate knowledge about diabetes research with the goal of improving the management of people with diabetes. The journal therefore seeks to provide a forum for the exchange of ideas between clinicians and researchers worldwide. Topics covered are of importance to all healthcare professionals working with people with diabetes, whether in primary care or specialist services. Surplus generated from the sale of Diabetic Medicine is used by Diabetes UK to know diabetes better and fight diabetes more effectively on behalf of all people affected by and at risk of diabetes as well as their families and carers.”