Patient, family and provider experiences with a very low-carbohydrate approach for type 1 diabetes

Abstract

Background: Adoption of a very low-carbohydrate (VLC) approach to aid in type 1 diabetes (T1D) management has recently gained momentum; however, there is limited research to guide its optimal implementation and concerns about sustainability and safety.
Aim: This study characterises the lived experiences of adult patients and caregivers of children with T1D who follow a VLC approach and patients’ diabetes medical providers (DMPs).
Setting: Online surveys were fielded internationally to members of the Facebook group TypeOneGrit who follow the VLC approach.
Methods: We performed applied thematic analysis of data based on responses to six open-ended survey questions. Multidisciplinary consensus coding was conducted, culminating in iterative higher-level qualitative analysis to generate a thematic depiction of participant experiences.
Results: A total of 931 responses from 155 adult patients, 112 caregivers and 61 DMPs were included. Analysis yielded four cluster themes: (1) Predominantly negative patient and caregiver experiences within the medical system with regard to the VLC approach, (2) mainly positive patient and caregiver experiences with the VLC approach despite challenges, (3) desire for widespread dissemination of information on the VLC approach and (4) acknowledgement of the positive attributes of the VLC approach and/or patient or family by DMPs, amid DMP concern over potential or encountered adverse outcomes.
Conclusion: This study produced valuable insights on the perceptions and experiences of adult patients, caregivers of children with T1D and patients’ DMPs with regard to the VLC approach.
Contribution: The VLC approach can be a viable adjunctive method for T1D management but requires increased understanding and support.