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

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

doi:10.1111/dme.15424

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

Diabet Med. 2024 Aug 16:e15424. doi: 10.1111/dme.15424. Online ahead of print.

Authors

Eloise Litterbach^{1

2

3}, Elizabeth Holmes-Truscott^{1

2

3

4}, Shikha Gray^{1

2}, Jennifer Halliday^{1

2

3}, Renza Scibilia⁵, Timothy Skinner^{1

2

6}, Jane Speight^{1

2

3}

Affiliations

¹ School of Psychology, Deakin University, Geelong, Victoria, Australia.
² The Australian Centre for Behavioural Research in Diabetes, Diabetes Victoria, Carlton, Victoria, Australia.
³ Institute for Health Transformation, Deakin University, Geelong, Victoria, Australia.
⁴ Australian Centre for Accelerating Diabetes Innovations, Melbourne Medical School, University of Melbourne, Melbourne, Victoria, Australia.
⁵ Breakthrough T1D, New York, USA.
⁶ Department of Psychology, University of Copenhagen, Copenhagen, Denmark.

PMID: 39150048
DOI: 10.1111/dme.15424

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.

Keywords: clinical care; health communication; psychosocial aspects; social stigma.

Grants and funding

Diabetes Australia