Understanding the self-management experiences and support needs during pregnancy among women with pre-existing diabetes: a qualitative descriptive study

BACKGROUND: With the increasing prevalence of pre-existing type 1 and type 2 diabetes in pregnancy and their associated perinatal risks, there is a need to focus on interventions to achieve optimal maternal glycemia to improve pregnancy outcomes. One strategy focuses on improving diabetes self-management education and support for expectant mothers with diabetes. This study’s objective is to describe the experience of managing diabetes during pregnancy and identify the diabetes self-management education and support needs during pregnancy among women with type 1 and type 2 diabetes. METHODS: Using a qualitative descriptive study design, we conducted semi-structured interviews with 12 women with pre-existing type 1 or 2 diabetes in pregnancy (type 1 diabetes, n = 6; type 2 diabetes, n = 6). We employed conventional content analyses to derive codes and categories directly from the data. RESULTS: Four themes were identified that related to the experiences of managing pre-existing diabetes in pregnancy; four others were related to the self-management support needs in this population. Women with diabetes described their experiences of pregnancy as terrifying, isolating, mentally exhausting and accompanied by a loss of control. Self-management support needs reported included healthcare that is individualized, inclusive of mental health support and support from peers and the healthcare team. CONCLUSIONS: Women with diabetes in pregnancy experience feelings of fear, isolation and a loss of control, which may be improved through personalized management protocols that avoid “painting everybody with the same brush” as well as peer support. Further examination of these simple interventions may yield important impacts on women’s experience and sense of connection. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12884-023-05542-4.