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

AbstractAimTo explore reactions to and preferences for words/phrases used in communications about diabetes among adults with diabetes and parents of children with diabetes.MethodsEligible 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.ResultsParticipants (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.ConclusionsThese findings provide novel evidence into (non‐)preferred, and potential (negative and positive) impacts of, commonly used diabetes words/phrases, supporting the international #LanguageMatters movement.