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 around-the-clock attention but there is little acknowledgment of the impact that nocturnal caregiving can have on caregivers in clinical care provision. This systematic review aimed to (1) explicate nocturnal caregiving practice (NCP) by identifying and synthesising peer-reviewed research to establish the prevalence and nature of NCP, (2) explore the impacts of NCP for caregivers, (3) evaluate the perceived value of technology for supporting NCP, and (4) examine potential solutions for mitigating NCP burden. In January, 2022, the databases CINAHL, MEDLINE, Web of Science, PsycINFO, Scopus and EMBASE were searched to identify peer-reviewed studies, published in English since 1997, which addressed NCP for juveniles with T1D. Quantitative, qualitative and mixed-methods studies were included. Risk of bias analysis was carried out using the quality assessment with diverse studies tool. Where possible, quantitative data were aggregated. Qualitative data was subjected to a narrative synthesis, using thematic analysis. Thirty-one studies met inclusion criteria, comprising 3,547 caregivers. 88% of caregivers engaged in NCP, though frequency was variable. Over 50% of participants (19-80%) failed to get adequate sleep and 54% reported poor sleep quality. Qualitative testimony detailed adverse impacts of NCP; 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.