A Qualitative Look at Feeling "Lost" During Pregnancy With Type 1 Diabetes

The risks and responsibilities of managing type 1 diabetes (T1D) increase for women as they experience pregnancy, labor, and childbirth, and these challenges continue after birth, according to new research that suggests healthcare professionals could alleviate women from some of these burdens.

The study, published by the International Journal of Qualitative Studies in Health and Well-being sought to describe healthcare for women with T1D during pregnancy, labor, birth, and up to 12 weeks postpartum in order to identify areas where women need support. The researchers used a phenomenological reflective lifeworld research approach, which began with 1 to 2 individual interviews with 10 Swedish women. The interviews took place during late pregnancy and up to 3 months after.

The interviews were transcribed and analyzed using this specialized research approach, which considers human experience in a way that forces the researcher to set aside assumptions.

Results showed that managing T1D becomes more intense during pregnancy and in the months that follow childbirth. This is due to the need to be even more vigilant than usual in monitoring blood glucose levels and dosing insulin, tasks the women performed mostly themselves, but which can also be performed by other healthcare professionals.

Of note, the women ranged in age from 27 to 37 and had lived with T1D between 14 and 26 years. Nine of the 10 women were first-time mothers, and this called for a particularly high level of emotional support. “The lived experience of having [T1D], being pregnant and giving birth, and of becoming a mother the first months after birth, appears as a period in which the woman to an even higher degree than usual must relate to her diabetes disease and the risks and responsibility that comes with it,” the authors wrote.

“For this to be possible, they needed a trustful and personal relationship with them. There was a need to be cared for, implying both receiving professional guidance, getting help to help oneself, and being taken care of,” they said.

Researchers uncovered a distinct feeling of being “lost” in the healthcare system, even during periods when they were surrounded by help from midwives or other healthcare professionals. Sometimes women received care from a diabetes specialist, and other times from a neonatal clinic. Women did not always know who was in charge or feel comfortable asking questions, and some reported being convinced that tests were repeated. This sensation changed over time, and thus the study divides findings in 3 different periods: pregnancy, labor and birth, and the postpartum period.

“In order to not feel lost, there was also a need to know and understand what was happening in care and why, to know who among the healthcare professionals was in charge and of what, and to sense that the healthcare professionals had control over the situation,” the authors wrote.

The study concluded that these results emphasize the importance of transforming care that puts women in control yet relieves them of some control. The authors noted the importance of person-centered care that encourages patients to be active in their care, rather than solely a recipient of care.

“Refined techniques to control the condition of the fetus and newborn, and the mother’s blood glucose and insulin dosages, cannot replace the personal interaction with healthcare professionals. These techniques, as we have shown, furthermore serve to emphasize the illness and the risks,” noted the authors. “Moreover, the complex situation that these women are in, both as experts on their illness and care and in need of care, requires a care that make women feel capable and responsible, but at the same time offers support and relieve them of their responsibility when needed.”

Reference

Dahlberg H and Berg M. The lived experiences of healthcare during pregnancy, birth, and three months after in women with type 1 diabetes mellitus. Int J Qual Stud Health Well-being. 2020;15(1):1698496. doi: 10.1080/17482631.2019.1698496.