KVINNORS UPPLEVELSE AV ATT LEVA MED POLYCYSTISKT OVARIESYNDROM - svåra symtom och avvisande bemötande från vården

Abstract

Background: Polycystic ovary syndrome (PCOS) is a common endocrine disorder, affecting up to one of five females in reproductive age. Common symptoms are hirsutism, overweight and infertility. Today's treatment options consist of life-style changes, and various medications for symptom relief. The high prevalence and complex nature of the disorder implies that the nurse will meet these patients in a wide variety of care contexts. To be able to give good and evidence-based care, the nurse needs adequate knowledge about women's experience of living with PCOS. Aim: The aim of this study is to explore the lived experience of women with PCOS. Method: A systematic literature review was conducted, consisting of 20 scientific, qualitative articles. Data analysis was made through the use of Friberg’s integrated compilation of qualitative articles, inspired by meta-synthesis. Results: Two main themes emerged, with three sub-themes each. The first main theme infers distress due to the disease and includes severe physical changes and destructive psychological impact, negative impact on relationships, and difficulties controlling and managing the diagnosis. The second main theme infers distress due to care and includes insufficient information, lack of support from health care, and the struggle to get a diagnosis. Conclusion: Hirsutism, overweight and infertility were described as the most common reasons for emotional distress, feeling less of a woman, and fear of the future. The difficulty in getting a diagnosis, insufficient information, lack of support, and lack of treatment options resulted in resignation and frustration. Person-centered care together with screening, assessment, counseling and peer-support groups have the possibility to better the care for women with PCOS. It’s important for the nurse to have good knowledge about PCOS, to be able to give adequate and evidence-based care and ease their suffering.