Fear of hypoglycemia is also a common occurrence for children and adolescents with Type 1 diabetes and their families [51
]. The earliest studies investigating FoH in the pediatric population adapted the adult HFS for use with children and their parents [52
]. The HFS for Parents (PHFS) and the HFS for Children (CHFS) have the same subscale structure as the adult version, comprised of both a behavior (B) subscale and a worry (W) subscale. The current version of the CHFS has ten items on the CHFS-B subscale (e.g., ‘keep blood sugars a little high to be on the safe side’) and 15 items on the CHFS-W subscale (e.g., ‘getting in trouble at school because of something that happens when my sugar is low’). The PHFS has ten items on the PHFS-B subscale (e.g., ‘avoid having my child being alone when his/her sugar is likely to be low’) and 15 items on the PHFS-W subscale (e.g., ‘child not having food, fruit or juice with him/her’).
Adequate reliability for the PHFS has been reported by several studies, with internal consistency ranging from 0.72 to 0.76 for the PHFS-B and 0.88 to 0.91 for the PHFS-W [29
]. In addition to the PHFS created by our research group, other researchers have independently modified the original HFS to assess parental actions to prevent hypoglycemia in their children, as well as their concerns about their children experiencing hypoglycemia [54
]. A more recent study [56
] modified the survey for assessment of FoH in parents of very young children with Type 1 diabetes, including toddlers (e.g., ‘Feed my child as soon as I feel or see the first signs of a low blood sugar.’). These modified parent versions have retained good internal consistency and test–retest reliability and they have yielded scores that were comparable to other published data [54
Compared with the parent and adult versions of the HFS, there is less research on the psychometric properties of the CHFS, but the available findings indicate adequate reliability. In a recent study of FoH in adolescents with Type 1 diabetes, Cronbach’s αs for the CHFS demonstrated adequate internal consistency for the CHFS-Total score and the CHFS-W (0.86 and 0.91, respectively), with lower internal consistency for the CHFS-B (0.54) [29
]. In another independent modification of the adult HFS for a study of FoH in Type 1 children attending diabetes camp [52
], the scale showed adequate internal consistency (Cronbach’s α coefficients 0.85, 0.64 and 0.88 for the CHFS-Total, CHFS-B and CHFS-W, respectively) and test–retest reliability.
Early studies using the PHFS found higher levels of FoH in mothers whose children experienced loss of consciousness owing to hypoglycemia, as well as those who were highly distressed by their children’s episodes during the night or in social situations [55
]. There is also some evidence showing that maternal FoH is higher for those with children on multiple daily injections compared with an insulin pump [49
]. In a study of mothers of younger children (2–8 year olds), maternal FoH did not correlate with child frequency of SH episodes, although this may have been attributable to an overall low rate of SH in the sample [56
]. However, a study of mothers of adolescents with Type 1 diabetes also found no relationship between frequency of SH in their children and FoH. Instead, the only predictor was mothers’ belief about whether or not their adolescent always carried fast-acting carbohydrate for hypoglycemic treatment [29
]. A total of two studies have investigated correlates of FoH in adolescents with Type 1 diabetes, both finding that, like adults, frequency of SH predicted FoH [29
]. Also similar to findings in adults, FoH in adolescents was associated with trait anxiety [29
]. No published studies have yet investigated predictors of FoH in younger children.
Only one previous study has compared levels of FoH in mothers of younger children and those of older children and found no significant differences in level of FoH [56
]. However, maternal FoH does appear to be significantly higher than paternal FoH, although it remains to be seen if this difference is clinically as well as statistically different [56
]. Perhaps not surprisingly, more than one study has found that levels of FoH in mothers of youths with Type 1 diabetes are significantly higher than the levels observed in adult patient populations [55
As in adults with Type 1 diabetes, there is an assumption that extreme FoH in either the parent or child can interfere with optimal diabetes management and control. That is, families with very high FoH may engage in more diabetes management behaviors to avoid hypoglycemia, which may lead to more frequent hyperglycemia. However, studies have, again, yielded inconsistent results. Several studies have investigated the relationship between FoH and diabetes control, based on the assumption that, if more FoH leads to more frequent hyperglycemia, HbA1c levels should be higher. Although some studies have not found an association between maternal or youth FoH and HbA1c levels [29
], others have reported a positive correlation between mothers’ FoH and their children’s glycemic control [55
]. Patton et al.
reported a correlation between higher PHFS-B subscale scores and youth’s HbA1c levels in mothers of young children with Type 1 diabetes, suggesting that parents of children in poorer metabolic control more frequently engage in behaviors to prevent hypoglycemia [56
Although the majority of studies have used the PHFS and CHFS to study FoH in the pediatric Type 1 diabetes population, other researchers have used alternative measures. In general, these studies have reported findings comparable to those yielded with the PHFS and CHFS. For example, Nordfeldt and Ludvigsson examined fear of SH in youth with Type 1 diabetes and their parents using a Visual Analogue Scale [60
], finding the highest levels of fear in youths who had experienced SH with unconsciousness and lower levels in those who experienced SH without unconsciousness. Kamps et al.
developed the Children’s Hypoglycemia Index to measure FoH in pediatric populations [61
]. Preliminary results indicated that the Children’s Hypoglycemia Index is a valid and reliable measure of youth FoH and that it significantly correlated with other measures of anxiety and FoH, including an early version of the CHFS [52