P-514: Emotional impacts of ketosis, hyperketonemia, diabetic ketoacidosis, and ketone monitoring on caregivers of youth living with T1D: a qualitative study
A Albanese-O’Neill, J Sherr, C Wysham, R Bergenstal, J Rosen, K A Willoughby, B De Los Santos, Y Poon, C CagleAbstract
Background
Diabetic ketoacidosis (DKA) is a life-threatening acute complication of type 1 diabetes (T1D).
Objectives
Despite how serious elevated ketones are, caregiver experiences surrounding ketone monitoring remain underexplored; therefore, this study sought to characterize caregivers’ perspectives
Methods
Twelve US-based caregivers of children <13 y/o living with T1D participated in 60-minute semi-structured interviews. Interviews explored caregiver experiences related to ketosis, hyperketonemia, ketone monitoring, and management to prevent DKA. Interviews were audio recorded, transcribed verbatim, and analyzed thematically in NVivo using a combined inductive and deductive coding approach guided by Grounded Theory principles and the constant comparative method. The study was IRB-approved.
Results
A recurring theme of chronic emotional and psychological burden emerged. In preparation for potential ketone events, many caregivers described the cumulative mental toll of continuous diabetes and ketone vigilance, such as overnight monitoring, managing illness, and persistent fears of DKA, which affected work, sleep, and overall wellbeing. As ketone levels escalate and require testing and active management, caregivers reported that stress often intensified, and in general, discussed how the social pressure from others (including other caregivers) heightened feelings of scrutiny around diabetes management decisions. Future readiness concerns were also prominent, with caregivers expressing uncertainty about the transition to independent ketone self-management by their child, adding another layer of emotional strain. Illustrative quotes are presented in Table 1.
Conclusions
Caregivers of youth living with T1D experience substantial emotional and psychological impact related to ketone monitoring and management to prevent DKA. These findings highlight the need for approaches to ketone monitoring that reduce caregiver burden, while supporting safe and timely care leveraging clear DKA mitigation plans.