Around-the-clock: Caregiving at Night for Juveniles Living with Type 1 Diabetes – A Systematic Review

Abstract

Caring for children with Type 1 Diabetes (T1D) can require round-the-clock attention but this aspect of the caregiving experience is underexplored in the literature, as a result no clinical care guidelines exist. With little acknowledgment of the impact that nocturnal caregiving has on caregivers, clinical care provision offers very limited support to caregivers who may be living with this significant burden for years. This systematic review aimed to explicate nocturnal caregiving practice (NCP) by identifying and synthesising all the relevant peer-reviewed research to establish the extent and nature of NCP while exploring the impacts for caregivers. The review also enquires into the perceived value of technology for supporting NCP and examines potential solutions for mitigating the burden.Thirty-one studies met inclusion criteria, comprising 3,547 caregivers. 88% of caregivers engaged in NCP, though frequency was very variable. Over 50% of participants (19-80%) were failing to get adequate sleep and 54% reported poor sleep quality. Powerful qualitative testimony detailed adverse impacts; exhaustion, difficulty making illness-management decisions, negative impacts on mood and physical health. Benefits from technology were equivocal. Evidence regarding predictors and associations for NCP, such as patient age, was contradictory. 83% of authors recommended that sleep be routinely addressed in clinic, which is not current practice.This review provides clear evidence that NCP in T1D is pervasive with significant negative impacts on caregivers. These secondary impacts of juvenile T1D need to be acknowledged so that care guidelines can be modified and psychosocial supports can be developed for use in clinical treatment environments.