It Is What It Is ... You Don't Have to be Perfect: Life after T1D Diagnosis

Purpose: A T1D diagnosis can have a profound psychosocial impact on families, and adaptation post diagnosis is critical for long term well-being. This study sought to assess the psychosocial experiences of families during the first year following T1D diagnosis. Method: Focus groups and interviews with children diagnosed with T1D between 8-12 years of age within the past two years (n=10) and parents (n=16) were conducted to explore the feelings, challenges, and experiences of that first year. Transcripts were analyzed using thematic analysis and deductive coding. Results: Children reported fear of needles and concerns about their relationships with peers, family and teachers changing once people knew of their diagnosis. They expressed annoyance with the number of questions asked of them and the intrusion of diabetes tasks in activities. Children and parents experienced feelings of distress, isolation, and sadness during the first year and were overwhelmed by the amount of information they were required to master. Parents expressed distress over keeping their child safe while also managing the emotional burden of diagnosis. Parents reported frustration with their inability to recall the content of their diabetes education and the calculations necessary to maintain “ideal” blood sugars. After receiving formal education, families reported fear and anxiety around managing food and insulin, concern about hyper- and hypoglycemia, feeling overwhelmed by the practical demands, like supply management, and a general lack of support. Most parents felt the need for their child maintain perfect blood sugars and a sense of hopelessness in trying to do so. Conclusions: Prior research has shown that individuals who are overwhelmed, worried, or sleep-deprived find it more difficult to learn new content. Our results suggest the need for an alternate approach to education at diagnosis that provides families with increased psychosocial support in a way that assists families during this first year, a time of learning and change. Disclosure K. P. Garza: None. K. R. Howard: None. N. W. Smith: None. J. Weissberg-benchell: None. M. Feldman: None. Funding JDRF (2-SRA-2020-985-S-B)