AbstractAim: The overall aim of the thesis was to examine the psychosocial effects and family reactions to participation in longitudinal studies with their children at high risk for type 1 diabetes. Additionally, we aimed to develop a shorter form for the children to measure their anxiety when thinking of their risk of developing type 1 diabetes, which could be used in The Environmental Determinants of Diabetes in the Young (TEDDY) study.Methods: We used parental questionnaires from the five-year visit in the Diabetes Prediction in Skåne study (DiPiS) to investigate parental anxiety when participating with their high-risk child. Anxiety was measured using the 6-item short State Anxiety Inventory (SAI) form, and logistic regression was used to examine factors associated with parental anxiety. The TEDDY cohort was used to develop a reliable and valid short form of the State Anxiety Subscale (SAI-CH) by using item-total correlation. The TEDDY cohort was also used to investigate parental study satisfaction and study visit compliance. Paper III identified factors associated with study satisfaction at two timepoints using multiple linear regression. In the last paper, we used variables collected in the first year of the study to identify, through multiple linear regression, those factors associated with study visit compliance in the subsequent three years.Results: In the DiPiS study, we found that most of the parents were not anxious when thinking about their child’s risk of type 1 diabetes. Anxiety levels were higher in mothers of children with islet autoantibodies and parents with a family history of type 1 diabetes, those with accurate risk perception, and those who experienced higher frequencies of worry. In the second paper, we described the development of a reliable and valid short 6-item form, which was subsequently chosen for continued use in the TEDDY study. Paper III revealed high overall parental study satisfaction in the TEDDY study, with mothers reporting higher mean satisfaction scores than fathers. Country of residence, staff consistency, the accuracy of parents’ perception of their child’s type 1 diabetes risk, and beliefs that something can be done to prevent diabetes in the child were all associated with higher study satisfaction for both mothers and fathers. In Paper IV, we identified modifiable and non-modifiable variables collected in the first year of TEDDY that were associated with study visit compliance in the three subsequent years. Mothers who completed fewer visits were likelier to be smokers and experience anxiety about their child’s type 1 diabetes risk. On the other hand, mothers who completed more visits were older, participating with their first-born child, had actively participating fathers, and were more satisfied with their study participation.Conclusion: Understanding the family’s reactions and experiences during participation in longitudinal screening studies can enhance our understanding of the study’s impact on the family. Attending to the collected information throughout the study can help provide families with the appropriate support, and information, and ultimately improve study satisfaction and visit compliance
