Sleep and Night-time Caregiving in Parents of Children and Adolescents with Type 1 Diabetes Mellitus – A Qualitative Study

ABSTRACT

Background

Type 1 diabetes mellitus (T1DM) is a common chronic illness of childhood, with parents assuming considerable responsibility for night-time diabetes caregiving. This qualitative study explored diabetes-related factors affecting, and solutions proposed to improve, parental sleep.

Participants

10 mothers and 10 fathers of children ≤18 years of age with T1DM in Otago, New Zealand.

Methods

Semi-structured individual interviews were audio-recorded, transcribed, and systematically coded for themes. Parents completed the Pittsburgh Sleep Quality Index (PSQI) and habitual sleep of parents and children were assessed via 7-day actigraphy.

Results

Parents (n = 20) and their children with T1DM (n = 16) were aged between 32 and 54 years, and 1 and 17 years, respectively. PSQI revealed poor quality sleep in 13/20 parents. A range of diabetes-related factors, including glucose monitoring and fear of hypoglycemia, contributed to parental sleep disturbance, including awakenings and the perception of “sleeping lightly”. Two distinct time periods resulted in greater sleep disturbance, notably, following T1DM diagnosis and when transitioning to using a new diabetes technology. Factors influencing maternal and paternal sleep were similar, but, generally, mothers described greater night-time care burden and sleep disturbance. While the use of diabetes technologies was generally advocated to improve parental sleep and the provision of nocturnal T1DM care, they were also perceived to potentially contribute to parental sleep disturbance.

Conclusions

Pediatric diabetes care teams should be aware of diabetes-related factors potentially affecting parental sleep, the mixed impacts of diabetes technologies, and consider tailored parental support and education to reduce the burden of nocturnal care.

Abbreviations

CGM, Continuous glucose monitoring; CSII, Continuous subcutaneous insulin infusion (via an insulin pump); FAP, Flash-augmented pump; FGM, Flash glucose monitoring; iCGM, Intermittent continuous glucose monitoring; MDI, Multiple daily injections; NBGM, Nocturnal blood glucose monitoring; NZDep2013, New Zealand Deprivation Index 2013; PSQI, Pittsburgh Sleep Quality Index; SAP, Sensor-augmented pump; SMBG, Self-monitoring blood glucose; SPT, Sleep Period Time; T1DM, Type 1 diabetes mellitus, WASO, Wake After Sleep Onset.

Acknowledgments

The authors wish to thank all the parents and their children for their insights and contribution to the study.

Disclosure statement

No potential conflict of interest was reported by the authors.

Ethics approval

The study was approved by the University of Otago Health and Disability Ethics Committee (Ethics ref: H17/129)

Supplementary material

Supplemental data for this article can be accessed here.

Additional information

Funding

This work was supported by a Dunedin School of Medicine Summer Scholarship;Phyllis Paykel Memorial Scholarship; and the Australasian Paediatric Endocrinology Group.