Depressive symptoms in mothers of infants identified as genetically at risk for type 1 diabetes.

OBJECTIVE: This study describes maternal depression associated with newborn genetic screening for type 1 diabetes after risk notification. RESEARCH DESIGN AND METHODS: Mothers of at-risk infants (n = 192), identified through newborn genetic screening as part of the Prospective Assessment of Newborns for Diabetes Autoimmunity study, were administered a structured telephone interview assessing maternal depressive symptoms 1 and 3.5 months after risk notification. Statistical analyses were conducted to examine predictors and correlates of maternal depressive symptoms. RESULTS: For the total sample, maternal depressive symptoms in response to infant risk status were not elevated at 1 and 3.5 months after risk notification. However, at the first interview, mothers from ethnic minority backgrounds (P < 0.002), with limited education (P < 0.001), and with postpartum depression symptomatology (P < 0.001) reported significantly more depressive symptoms in response to risk notification (r2 = 0.354). At the second interview, postpartum depression symptomatology remained a powerful predictor of depressive symptoms in response to risk notification (P < 0.001). In addition, certain coping styles (wishful thinking, self-blame, and seeking social support) were associated with increased depressive symptoms. A history of major depression was a correlate of both postpartum depressive symptomatology (r = 0.26) and maternal depressive response to risk notification (r = 0.21). CONCLUSIONS: For the most part, mothers of infants genetically at risk for type 1 diabetes do not appear to evidence elevated depressive symptoms. This suggests that most mothers are resilient when notified of infant risk. However, certain maternal characteristics such as ethnic minority status, less than a high school education, postpartum depression symptomatology, a history of major depression, and certain coping strategies (wishful thinking, self-blame, and seeking social support) appear to be associated with a more difficult maternal response to the news of an infant's increased genetic risk for type 1 diabetes.

Maternal efforts to prevent type 1 diabetes in at-risk children.

OBJECTIVE: The aim of this study was to assess maternal diabetes prevention efforts aimed at children identified as at risk through newborn genetic screening. RESEARCH DESIGN AND METHODS: A total of 192 mothers of children identified as at risk for type 1 diabetes through newborn genetic screening were administered a structured interview 3.6 +/- 0.8 years after risk notification. The interview assessed possible diabetes prevention behaviors across six domains: health surveillance, diet, physical activity, illness prevention, medications, and stress reduction. A mother's cognitive (diabetes risk perception and perceived control), affective (anxiety), and coping responses to the child's at-risk status were assessed. RESULTS: A total of 67% of mothers reported one or more diabetes prevention behaviors. Monitoring behaviors (e.g., watching for signs of diabetes and checking blood glucose) were the most common, reported in 59%, followed by modifications in the child's diet in 34% and physical activity in 14%. Potentially harmful prevention behaviors (e.g., limiting contact with other children, delaying immunizations, and giving medications including insulin) were rare. Mothers who engaged in diabetes prevention behaviors reported higher diabetes risk perception, greater anxiety, and more use of certain coping styles. Infants of these mothers were more likely to have a first-degree relative with diabetes. CONCLUSIONS: In the absence of known methods of preventing type 1 diabetes, most mothers of at-risk children report diabetes prevention behaviors. Such behaviors must be more carefully assessed to ensure accurate interpretation of data obtained from natural history studies and prevention trials.

Maternal anxiety associated with newborn genetic screening for type 1 diabetes.

OBJECTIVE: To describe maternal anxiety associated with newborn genetic screening for type 1 diabetes during the first year after risk notification. RESEARCH DESIGN AND METHODS: Mothers of at-risk infants (n = 435), identified through newborn genetic screening as part of the Prospective Assessment of Newborn for Diabetes Autoimmunity (PANDA) study, were administered a short form of the State Trait Anxiety Inventory (STAI) during telephone interviews approximately 3.5 weeks, 4 months, and 1 year after risk notification. Statistical analyses were conducted to examine predictors of maternal anxiety at each interview as well as changes in anxiety over time. RESULTS: For the total sample, initial state STAI scores were not elevated and declined further over time. However, Hispanic mothers, those with low levels of education, those who overestimated the child's risk for diabetes, and mothers of infants in the highest risk group exhibited significantly elevated initial state STAI scores. At 4 months, higher state STAI scores were associated with higher initial state STAI scores, single parent status, having an infant with a first-degree relative with diabetes, and overestimation of the child's actual risk. Initial and 4-month STAI scores remained predictive of STAI scores at 1 year. In addition, single mothers and mothers of female children reported higher STAI state scores 1 year after risk notification. CONCLUSIONS: For most mothers, newborn genetic screening to identify infants at increased risk for type 1 diabetes is not associated with significantly elevated maternal anxiety; anxiety further dissipates over time. However, anxiety levels vary considerably as a function of maternal ethnic status, education, marital status, maternal estimation of infant risk, and sex of the child and may be significantly elevated in some women.

Prospective assessment in newborns of diabetes autoimmunity (PANDA): maternal understanding of infant diabetes risk.

PURPOSE: To assess accuracy of mothers' understanding of their newborns' genetic risk for type 1 diabetes and to identify predictors of the comprehension and retention of genetic information. METHODS: Mothers of 435 newborns genetically screened at birth were informed of the infant's risk for type 1 diabetes using a standard script that provided both categorical and numerical risk information. The mothers' comprehension and retention of this information were assessed by structured interview on two occasions, approximately 3.6 weeks and approximately 3.9 months postnotification. RESULTS: At the initial interview, 73.1% of mothers gave a correct estimate of their child's genetic risk, 3.2% overestimated risk, 13.3% underestimated risk, and 10.3% could not recall risk at all. At the follow-up interview, fewer mothers (61.9%) correctly estimated their child's risk and more mothers (24.4%) underestimated their child's risk. Maternal accuracy was associated with maternal education, ethnic minority status, infant risk status, maternal ability to spontaneously recall both categorical and numerical risk estimates, and length of time since risk notification. Underestimation of risk was associated with maternal education, family history of diabetes, time since risk notification, and maternal anxiety about the baby's risk. CONCLUSION: The accuracy of mothers' recall of infant risk declines over time, with an increasing number of mothers underestimating the infant's risk. Effective risk communication strategies need to be developed and incorporated into genetic screening programs.