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Nighttime caregiving behaviors among parents of young children with Type 1 diabetes: associations with illness characteristics and parent functioning.

Publication: Families, Systems & Health
Publication Date: 01-MAR-09
Format: Online
Delivery: Immediate Online Access
Full Article Title: Nighttime caregiving behaviors among parents of young children with Type 1 diabetes: associations with illness characteristics and parent functioning.(Report)

Article Excerpt
Parents of young children with Type 1 diabetes describe daily management as relentless. Nighttime caregiving, including nocturnal blood glucose monitoring (NBGM), occurs and may increase parents" anxiety and stress. The goal of this study was to examine the frequency of NBGM among parents of young children with Type 1 diabetes, and to identify children's illness characteristics and parents' fear of hypoglycemia, anxiety, and parenting stress associated with nighttime monitoring. Parents (N = 71) of children with Type 1 diabetes ages 2 to 6 completed questionnaires to assess frequency of NBGM, illness characteristics and health outcomes, and parent concern. Approximately one third of parents reported regularly monitoring their child's blood glucose level after their child was asleep. Frequency of NBGM was positively associated with basal-bolus regimen, longer illness duration, and increased parent-reported anxiety and parenting stress (p < .05). NBGM is prevalent among parents of young children with Type 1 diabetes, suggesting that parents' nighttime caregiving practices and resulting sleep disruption should be routinely addressed in clinical practice. Further investigations of NBGM, child health outcomes, and parent quality of life are warranted.

Keywords: Type 1 diabetes, young children, caregivers, sleep, parenting stress

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Caring for a young child with a chronic illness is an "around the clock job. The requirements of nighttime management and monitoring in addition to daily tasks can be particularly detrimental to parent functioning. Sleep disruption, depression, decreased quality of life, and fatigue have been noted among parents of children with a number of chronic illnesses, including epilepsy, atopic dermatitis, cystic fibrosis, and asthma (Chamlin et al., 2005; Cottrell & Khan, 2005; Fiese, Winter, Sliwinski, & Anbar, 2007; Meltzer & Mindell, 2006). For example, in a sample of children with cystic fibrosis and ventilator dependency, parental sleep disruption due to worry about child illness or nighttime management behaviors (i.e., waking up to check ventilator machine or administer medication) mediated the relationship between child health status and parent-reported depression and fatigue (Meltzer & Mindell, 2006). Caregiving responsibilities that affect sleep in parents of young children are of particular interest because parenting young children can be exhausting independent of the additional responsibility of nighttime chronic illness management (Sullivan-Bolyai, Knafl, Deatrick, & Grey, 2003). However, when examining family functioning in a young child population, exploration of nighttime management behaviors is a critical, yet often overlooked, area of research.

MANAGEMENT OF DIABETES IN YOUNG CHILDREN

One of the most common chronic illnesses in childhood is Type 1 diabetes, with a prevalence of 1 of every 400 to 600 children (EURODIAB, 2000). Management of diabetes in young children (ages 6 years and younger) is an emerging area of inquiry (Kiess et al., 1998) given that recent trends indicate that the most rapid rise of incidence of Type 1 diabetes is in this age group (EURODIAB, 2000). Proper diabetes management at any age requires continuous effort on the part of parents and children. However, for parents of young children, the burden is more pronounced because parents must assume the majority of responsibility for diabetes-related tasks, including frequent blood glucose (BG) monitoring, administration of insulin injections, carbohydrate counting, and prevention of hyperglycemia and hypoglycemia (Kiess et al., 1998).

Research exploring parent functioning in the context of diabetes management has consistently reported higher rates of anxiety and stress as compared with parents of healthy children (Lewin et al., 2005; Wysocki, Huxtable, Linscheid, & Wayne, 1989). Child age is an important moderating factor given that parents of younger children with diabetes report more symptoms of pediatric parenting stress, anxiety, depression, and general distress than parents of older children (Stallwood, 2005; Streisand, Swift, Wickmark, Chen, & Holmes, 2005). Worry about hypoglycemia may also play a role as increased fear of hypoglycemia has been related to increased parent report of stressful events and more difficulty coping with stressors (Streisand et al., 2005). Studies are beginning to parcel out specific tasks related to diabetes management and their impact on parent functioning; for example, Powers and colleagues (2002) found a significant, positive relationship between parenting stress and child mealtime problem behaviors in a sample of parents of young children with Type 1 diabetes. However, relatively few studies have examined the role of nighttime caregiving and its impact on parent anxiety and stress.

NIGHTTIME DIABETES MANAGEMENT AND HYPOGLYCEMIA

Parents of young children with Type 1 diabetes report significant sleep disruption and chronic sleep deprivation due to worry about diabetes care and monitoring for hypoglycemia (Sullivan-Bolyai, Deatrick, Gruppuso, Tamborlane, & Grey, 2002). In a recent study of parents of young children, the most frequently endorsed parent worry was a low blood sugar while their child was asleep (Patton, Dolan, Henry, & Powers, 2007). Metabolic research confirms that parents of young children have legitimate concerns. Severe hypoglycemia, which can be related to loss of consciousness and seizure activity (Ryan, Gurtunca, & Becker, 2005), is more prevalent in young children (Porter, Keating, Byrne, & Jones, 1997) and more common at night (Amin et al., 2003). Moreover, nocturnal hypoglycemia occurs more often in children with better metabolic control (i.e., lower HbAlc; Porter et al., 1997), further complicating a parent's ability to achieve a balance between optimal BG management and day-to-day health and safety.

In an effort to detect nocturnal hypoglycemia, parents of young children may develop...

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