目的:探讨糖尿病成人和糖尿病儿童父母对糖尿病交流中使用的单词/短语的反应和偏好。
方法:符合条件的成年人(18岁以上)患有糖尿病,或者养育一个患有糖尿病的孩子,通过社交媒体招募来完成在线横截面,混合方法调查。研究特定的项目被用来检查22个常用的糖尿病单词/短语,以参与者的认知感知(“有帮助”,\'尊重\',\'准确\',\'有害\',\'判断性\'和\'不准确\')和情绪反应(\'乐观\',\'动机\',\'supported\',\'理解\',\'冒犯了\',\'被指责\',\'苦恼\'和\'生气\')。开放式问题邀请对(非)首选语言及其影响的进一步反馈。使用描述性统计和归纳主题分析对数据进行分析。
结果:参与者(N=865)包括患有糖尿病的成年人(1型:n=519;2型:n=180,其他类型:n=48)和患有糖尿病的儿童的父母(n=118)。与负面看法/情绪反应最常见的单词/短语是“不合规”(60%的判断性;47%的人感到受到指责)和“...好/坏”(54%的判断性;43%的指责)。据报道,“管理糖尿病”有积极的看法(73%有帮助,47%的人感到理解),“糖尿病患者”(72%尊重;49%理解),\'...在/在目标范围之外\'(60%有帮助,44%的理解),和“条件”(58%尊重;43%理解)。参与者的定性回答照亮了感知,跨越五个主题的经验和影响:(1)准确性和简单性;(2)身份;(3)责备,判断和污名;(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。
结论:这些发现为(非)首选,和潜在的(负面和正面)影响,常用的糖尿病单词/短语,支持国际#LanguageMatters运动。
OBJECTIVE: 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.