Background: Self-care is a major component of diabetes care and can influence outcomes. It is recognised that some people with diabetes experience distress relating to their diabetes, separate from depression, and that distress can impact on self-care.

Methods: Participants were NZ adults with insulin-treated diabetes. This mixed methods methodological study utilised a postal questionnaire comprising the Patient Activation Measure (as a proxy indicator of active self-care), the Diabetes Distress Scale (DDS) and Provider Communication and Decision-making items. A subset was purposively sampled for a telephone or face to face interview to further explore these constructs.

Results: The study questionnaire was completed by 220//982 participants (response rate 22%). The mean age was 62 years (SD = 13.69) and 54% were males. Most were NZ European (94%) with a mean duration of diabetes 20 years (M = 19.8, SD = 12.5); 61% had type 2 diabetes and HbA1c ranged 5.5 – 12.3% (M = 7.9%, SD = 1.23). The mean health activation score was 63.44 (SD = 18.1) from a possible range of 1 - 100 suggesting participants self-rated a high level of health activation. A low level of diabetes distress was reported with a mean of 2.00 (SD = 0.92) from a possible range of 1-6. Thematic analysis of interview data revealed considerable distress across many facets of life not revealed through quantitative exploration using the DDS.

Conclusions: Participants in this study described considerable distress relating to the self-care of their diabetes which affected their ability to fully participate in self-care activities. Given the degree of distress, assessment of this should be included in as a part of routine assessment.