Physiologic Challenges

Following diagnosis, approximately 69% of young children experience a temporary restoration of beta cell function (i.e., honeymoon period) as a result of insulin therapy, during which less insulin is required. Yet, 90% of young children no longer fall into this category 12 months post-diagnosis [12]. Thus, parents must quickly adapt to a new T1D regimen and changing physiological needs. Young children also exhibit increased insulin sensitivity, susceptibility to hypoglycemia, and potentially long-term neuropsychological effects due to difficulties meeting treatment goals and longer disease duration. The burden of T1D management and resulting parental worry about acute and chronic complications likely contributes to daily BG management challenges and parent stress [13-15, 7].

Research on the neurocognitive consequences of early-onset T1D and related glycemic variability is emerging. Recently, the DirecNet research group published several papers comparing brain structure and neuropsychological functioning in a group of young children (ages 4-<10) with T1D to age-matched healthy controls. Using structural magnetic resonance imaging, Marzelli and colleagues found that young children with T1D with a history of significant hyperglycemia evidenced decreased gray matter volume as compared to healthy control participants in key brain regions associated with cognitive capacities [16]. The association between glycemic variability, particularly hyperglycemia, and cognitive function was more pronounced in young children with earlier onset and longer duration of diabetes, further highlighting the vulnerability of the developing brain in this age group [17]. In this same sample from the DirecNet study, Cato and colleagues reported trending associations among executive functioning, learning/memory, and hyperglycemia, suggesting that structural brain changes in youth with diabetes have a subtle, yet measurable, impact on cognition as soon as two years after the onset of T1D [18]. Additional research on the long-term cognitive impact of T1D and hyperglycemia in early childhood is needed.

The very young age at diagnosis during a critical period of rapid neurological growth contributes to significant concerns regarding hypoglycemia as well. For a variety of reasons, including lack of expressive language skills and cognitive immaturity, young children may be unable to reliably detect and/or report early symptoms of hypoglycemia [9]. Parents may struggle to discriminate between behavioral cues signifying a low or high BG level and normal developmental (mis)behavior such as temper tantrums [19], which can interfere with proper T1D management [20]. Further, young children's cognitive capacities make it difficult for them to grasp complex, higher-order concepts typically associated with formal, logical thought, including time and cause and effect. Given the concrete reasoning skills and limited problem-solving abilities of young children, adherence to the T1D treatment regimen may, in fact, seem like punishment [21]. The young child's limited cognitive ability to cope with daily regimen demands may also lead to aggression, resistance to BG checks or injections/site changes, or somatic complaints [19].

Nutrition

Dietary intake and mealtime behaviors play an integral role in overall T1D management. Postprandial glycemia is noted to be one of the most important predictors of HbA1c and is associated with the onset of complications [22]. Research has demonstrated that common childhood eating patterns, such as consuming a breakfast with a high glycemic index (i.e., cereal with milk), can have a substantial impact on glycemic control throughout the day and following night [23-25]. However, it can be difficult for children to eat appropriately balanced and nutritious meals at scheduled mealtimes under the best of circumstances, as transient food preferences and food refusal are typical even for healthy young children [26]. Insulin dosage, which is largely based on predicted food consumption, can be difficult to estimate in advance. Many parents therefore choose to administer insulin after a meal is consumed in order to avoid hypoglycemia if too little food is eaten, despite the fact that T1D control may be compromised by not administering the insulin pre-meal [27].

Eating behavior has been the focus of several descriptive studies of young children with T1D. Parents of children with T1D report greater negative child mealtime behaviors compared to parents of controls, including longer meal duration, poor appetite, and oppositional behavior [28]. Observational studies by Patton and colleagues found that problematic parent and child behaviors occurred, on average, for nearly half of videotaped family meals [29]. Further, Patton and colleagues videtapted 3 or more meals in 39 young children with T1D and found significant associations between glycemic control and child behaviors of ‘play and away,’ suggesting that disruptive behavior at meals may impact glycemic control [30]. In our own work with parents of young children with T1D, more frequent child feeding problems were similarly associated with a lower percentage of daily BG levels in range and poorer glycemic control [31]. Dietary quality of young children with T1D is also poorer than their healthy peers, as recent studies indicate that young children with T1D have diets lower in fruits/vegetables and higher in saturated fats, placing them at higher risk for cardiovascular disease [32]. Pickiness and dietary neophobia also impact dietary quality and variety (although not glycemic control directly) in older children with T1D [33].

Initial Adjustment following Diagnosis

At diagnosis, parents must quickly become experts in T1D management while simultaneously teaching others about proper care and ensuring that their child maintains a similar developmental trajectory as before diagnosis [43]. Smaldone and Ritholz completed semi-structured interviews with 14 parents of children diagnosed with T1D in toddlerhood and found that the diagnosis period was frought with overwhelming feelings of fear, worry, and self-doubt. Parents also reported feelings of isolation, as it was difficult for family members and friends to understand diabetes care and participate in T1D care [41]. Research has indicated that elevated levels of distress are common during the initial months after diagnosis of T1D, including increased prevalence of post-traumatic stress, anxiety, and depressive symptoms [44-46]. Providing increased support for parents of young children at the time of diagnosis may be critical to facilitate this initial adjustment period and beyond, as maternal distress at diagnosis predicts maternal distress even years later [47]. Sociodemographic markers, such as lower income levels or single parent households, can portend which parents are at risk for elevated psychosocial concerns at diagnosis [48, 49].

General and Disease-Specific Parent Distress

The demands and stresses of the diabetes regimen may have long-lasting effects on parents’ well-being and quality of life [50]. A recent systematic review of the psychological experience of parents of children with T1D found that 19% of parents endorsed significant distress 1 to 4 years after diagnosis [51]. The younger the child with diabetes, the greater the likely impact on parental psychosocial functioning [50, 52].

Parents of young children with T1D are at increased risk for depression, anxiety, and disease-specific indicators of well-being such as pediatric parenting stress and hypoglycemia fear. In a sample of 67 mothers of young children (ages 1-8) diagnosed with type 1 diabetes >6 months, 21% of mothers reported clinically significant symptoms of anxiety and 24% reported clinically significant symptoms of depression [53]. Similarly, our earlier descriptive study of 73 parents of young children (ages 2-6) with T1D found that 21% of parents endorsed significant symptoms of anxiety [20].

Symptoms of anxiety and depression are often related to parent report of frequency of, and difficulty with, stressors related to caring for a child with a chronic illness, or “pediatric parenting stress [20, 54].” Assessment of pediatric parenting stress captures interrelationships among three central features: (1) child health, (2) parental roles, responsibility, and burden, and (3) psychological and behavioral response and adaptation to illness [55]. Several investigations have found greater levels of parenting stress in parents of young children with T1 diabetes as compared to parents of older children with diabetes and healthy controls [28, 19, 20].

As noted earlier, young children are more susceptible to glycemic variability, including hypoglycemia, and cognitive and verbal immaturity presents an additional challenge to hypoglycemia identification in young children. As a result, parents often express significant fear of hypoglycemia that impacts daily T1D management and parental quality of life. Patton and colleagues revised the Hypoglycemia Fear Survey [56] for parents of young children and found that parents endorsed significant worry about hypoglycemia that impacted daily behaviors. For example, in a sample of 24 parents of young children (ages 2-8) on continuous subcutaneous insulin infusion (CSII), many parents reported significant worry about their child having a low BG level while asleep (63%) or while away from a parent (46%); in addition, 38% of parents reported significant worry about their child having a seizure and 38% reported worry that no one would be able to help their child during a hypoglycemic event [57]. Episodes of severe hypoglycemia can shake a parent's confidence to effectively manage diabetes, leading to increased anxiety, difficult sleeping, and heightened vigilance [39]. Parents may also change daily T1D management behaviors in response to hypoglycemia fear, as elevated worry about hypoglycemia has been related to higher daily BG levels in young children [58].

Parent-reported symptoms of anxiety and depression, pediatric parenting stress, and hypoglycemia fear are highly correlated. Patton and colleagues examined relations among depressive symptoms, pediatric parenting stress, and hypoglycemia fear in parents of 39 young children (ages 2-7) with T1D. Results indicated that depressive symptoms were associated with 58% of the variance in parent-reported frequency of pediatric parenting stress. Further, depressive symptoms and hypoglycemia fear were associated with 68% of the variance in parent-reported difficulty with pediatric parenting stress, highlighting the interrelationships among general depressive symptoms and disease-specific indicators of stress and worry related to T1D management [59]. Further, our own work has demonstrated that fathers who report high levels of pediatric parenting stress also report higher state anxiety, fear of hypoglycemia, and lower self-efficacy for diabetes care [60]. Parent stress and worry may increase during key developmental transitions for young children, such as starting school or going to summer camp [41].

Parent Sleep

Parents’ own sleep patterns are often disrupted when caring for a young child with T1D [61, 39]. Our studies have demonstrated that a significant percentage of parents of young children with T1D report poor sleep quality, with 36% of parents perceiving their sleep quality as “fairly bad” or “very bad.” Using baseline data from our ongoing randomized controlled trial (RCT), parents (n=134) reported an average of 6.19 hours of nightly sleep [62], far below the recommendations for adult sleep by the National Sleep Foundation [63]. Further, up to 42% of parents report routinely monitoring their child's blood glucose level after their child is asleep, which may significantly contribute to ongoing parent and child sleep disruption [64, 62]. Nighttime monitoring of BG levels has also been associated with increased anxiety and parenting stress, suggesting that daily T1D care demands may impact parental quality of life [65].

Impact of T1D on Children's Quality of Life/Emotional Functioning

Less research has systematically evaluated the impact of T1D on young children's quality of life. Studies with school-age children have demonstrated mixed results regarding whether youth with diabetes show significantly elevated stress and depression as compared to healthy controls [66, 67]. The DirecNet Study Group found that parents reported greater internalizing symptoms, including depression, anxiety, and somatization symptoms, in young children (ages 4-10) with T1D as compared to healthy controls [18]. A recent study evaluating routine behavioral and mental health screening in a pediatric diabetes clinic found that young children ages 4-7 were more likely to have parent-reported elevations on the Strengths and Difficulties Questionnaire (SDQ), suggesting that young children with T1D are at greater risk for psychological disorders such as anxiety or depression [68].

Greater parent difficulties also pose additional challenges for young children. In a large sample of 325 children ages 2-18, elevated parental fear of hypoglycemia was related to lower parent-reported child quality of life [69]. Greater reported pediatric parenting stress has been associated with more frequent child behavior problems [20] and mealtime misbehavior in young children with T1D [28]. Further, normative behavior problems, such as dawdling at meal times, refusing to eat food presented, and dawdling before bedtime, are perceived as more problematic for parents of young children with T1D as compared to normative samples [20].

On a positive note, research has consistently demonstrated that tools for diabetes management, such as insulin pumps or continuous glucose monitors, do not appear to negatively impact quality of life and may even improve quality of life in young children [70, 71]. Further, parents typically report high levels of satisfaction with such technologies for young children [72].

The authors were supported in part during the writing of this manuscript by NIH R01 DK080102 awarded to RS (Dr. Streisand is PI on an R01) and NIH K23DK099250 awarded to MM.