Pre-existing diabetes, type 1 or type 2 diabetes, can be a challenge to manage during pregnancy. Due to the increased fetal and obstetrical risks from hyperglycemia, women are advised to keep blood glucose as close to normal as possible. Diabetes distress is the negative emotional experience of managing diabetes, with prevalence between 20-50% in non-pregnant adults with diabetes. As diabetes distress during pregnancy has not been well studied, the purpose of this study was to use a sequential explanatory mixed methods approach to understand the extent and impact of diabetes distress. This was achieved by first conducting a cross-sectional quantitative study with 76 women pre-existing diabetes. Diabetes distress was measured with the Problem Area in Diabetes (PAID) Scale and a score of 40 or higher indicated high diabetes distress. Women with both types of diabetes and high and low PAID scores were recruited to the second strand, which was an interpretive description qualitative study. Semistructured interviews were conducted with 18 women discuss their experiences of diabetes distress and managing diabetes in pregnancy. In the mixed methods analysis, it was observed that while diabetes distress was seen in 22.4% of women, the majority of women who took part in the qualitative interviews described themes of diabetes distress whether they had a high or low PAID distress score. Current diabetes distress tools are not validated for pregnancy, and qualitative findings indicate that diabetes distress during pregnancy is uniquely defined by worries for the baby. Development of a pregnancy-specific diabetes distress tool for integrated screening during pregnancy would be beneficial to better capture distress rates in this population. The counterpart to the qualitative findings of diabetes distress were findings of resiliency demonstrated by the participants. Further research is needed to better understand appropriate interventions to increase resiliency in pregnancy to mitigate diabetes distress. / Thesis / Doctor of Philosophy (PhD) / Women with type 1 and type 2 diabetes require intensive blood sugar control while they are pregnant in order to have a healthy pregnancy. While it is known that diabetes during pregnancy can be challenging emotionally, there is limited information about how diabetes distress affects this group. The aim of this thesis is to understand how many women report diabetes distress during pregnancy and how they perceive diabetes distress. This thesis includes a synthesis of the literature on mental health and psychosocial well-being, a study that administered surveys at one time during pregnancy, a study that used interviews to ask the same women about their experience of pregnancy with diabetes, and a study that mixed the survey and interview results. The results illuminate the extent to which diabetes distress affects women during pregnancy, informing future research that will help better screen for diabetes distress and improve clinical care during pregnancy.

Bakgrund: Diabetesbörda innefattar emotionella aspekter kopplade till diabetes och är korrelerat till sämre glykemisk kontroll samt suboptimal sjukdomshantering. Diabetesbörda är ett lågt prioriterat problem i diabetesvården och det föreligger ett stort mörkertal, därtill berörs diabetesbörda sparsamt i de svenska nationella riktlinjerna för diabetesvård. Syfte: Syftet var att undersöka samband mellan diabetesbörda och glykemisk kontroll, diabetesduration samt demografisk data hos personer med Diabetes mellitus typ 1.  Metod: Kvantitativ deskriptiv tvärsnittsstudie. Totalt inkluderades 69 personer. Examensarbetet utfördes på två diabetesmottagningar i Sverige. Studiedeltagarna besvarade enkäten Swe-PAID-20 samt frågor avseende kön, ålder och diabetesduration och aktuellt HbA1c registrerades. Data analyserades med icke-parametriska metoder. Resultat: Förhöjd diabetesbörda upplevdes av 20% av studiedeltagarna och 45% rapporterade något diabetesrelaterat problem som ganska allvarligt respektive mycket allvarligt. Högt HbA1c var korrelerat med behandlingsrelaterade problem samt stödrelaterade problem. Samband mellan diabetesbörda och övriga variabler samt skillnader mellan subgrupper påvisades inte.  Slutsats: Diabetesbörda är ett relativt vanligt förekommande problem i den undersökta populationen. Högt HbA1c påvisades vara en prediktor för behandling- och stödrelaterade problem. Ökad kunskap om diabetesbörda kan bidra till ökad personcentrering i diabetesvården, minskat lidande för den enskilde individen samt en resursbesparing för samhället genom att minska risken för komplikationer. Screening av diabetesbörda hos samtliga individer med T1D kan vara av värde, då diabetesbörda inte är mer vanligt förekommande i någon specifik grupp av personer. / Background: Diabetes distress includes emotional aspects linked to diabetes and correlates to poor glycemic control and suboptimal self-management. There is many unreported cases and diabetes distress is currently a low priority problem and is sparsely addressed in the Swedish national guidelines for diabetes care. Aim: The aim was to investigate the correlation between diabetes distress and glycemic control, duration of diabetes, and demographic data in people with Diabetes mellitus type 1. Method: A quantitative descriptive cross-sectional study. A total of 69 people were included. Data was collected from two diabetes clinics in Sweden. The participants answered the Swe-PAID-20 questionnaire and questions regarding gender, age, and diabetes duration and current HbA1c was noted. Data were analyzed using non-parametric methods. Main results: Increased diabetes distress was experienced by 20% of the participants and 45% reported a diabetes-related problem as a “somewhat serious problem” or a “serious problem”. Higher HbA1c correlated with treatment-related problems as well as support-related problems. Associations between diabetes distress and other variables and differences between subgroups were not detected. Conclusion: Diabetes distress was a relatively common problem in the studied population. Elevated HbA1c values indicated treatment and support related problems. Increased knowledge about diabetes distress can contribute to a more person-centered diabetes care, reduce suffering for the individual and save resources for society by reducing the risk of complications. Screening is important as diabetes distress is not more common in any specific population and helps to identify people in need of support.