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.

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