Vara kvinna som barn – en kvalitativ intervjustudie om unga kvinnor med endometrios och deras upplevelser av kontakten med vården som barn

Sammanfattning: Endometriosis is an inflammatory disease where endometrium grows outside the uterus. It affects 10 percent of women, most presenting with symptoms during adolescence. The median age for diagnosis is 37 y/o, despite the early onset. Diagnosing endometriosis is difficult in children, and adolescents with endometriosis is an area in need of research. Previous studies have found that women with endometriosis have an unsatisfactory experience of healthcare, but the healthcare needs of children and adults are not identical. To increase knowledge of children with endometriosis, a qualitative study was conducted to describe young women’s experiences of healthcare encounters from a child perspective, how these encounters affected them, and how they wished their experiences were. Nine women (age 18-25) participated in semi-structured interviews which were transcribed and analyzed using content analysis. The women described health care providers’ (HCP) lack of knowledge, and being questioned and dismissed by the HCP. Trusting the HCP, and feeling unable to question their assessment, meant the women questioned themselves. This created a sense of hopelessness and being a burden, but some positive encounters also occurred where they felt acknowledged. Their healthcare encounters caused problems in other aspects of their childhood. Inadequate treatment limited their presence in school, participation in after-school activities, and time spent with friends. Not having an explanation for their symptoms meant school questioned them. The women described feeling questioned and misunderstood by people around them, amplifying the uncertainty of being an adolescent. They expressed wishes for better knowledge among HCP, and a clearer path to healthcare. The women also wished for better treatment from HCP, and receiving adequate treatment sooner. A general theme was that their healthcare encounters had a negative impact on their childhood and that the Womens’ Clinic did not account for the specific needs of the child.