Information, counseling and support needs of women with premature ovarian insufficiency: Qualitative findings from Germany.

BackgroundPremature ovarian insufficiency (POI) affects approximately 3,5-3,7% of women under 40 and is associated with significant physical, psychological, and social consequences. Despite international evidence indicating substantial unmet needs in diagnosis, information, and support, little is known about the situation of affected women in Germany.ObjectivesThis study aimed to explore the information, counseling, and support needs of women with POI within the German healthcare context.DesignA qualitative study design using episodic interviews was employed.MethodsEight women diagnosed with POI between the ages of 28 and 38 were recruited via online forums, social media groups, a gynecological practice, and personal networks. Interviews were conducted by telephone, transcribed verbatim, and analyzed using qualitative content analysis with inductively developed categories.ResultsFour central themes emerged: (1) initial symptoms and diagnosis, (2) unmet information and counseling needs, (3) social support and barriers to open communication, and (4) challenges in the workplace. Participants described prolonged diagnostic pathways, insufficient medical sensitivity, and a lack of accessible, evidence-based information. Many sought information online or through peer networks due to inadequate professional guidance. Social support was identified as a key coping resource, while societal taboos surrounding menopause contributed to feelings of isolation. Workplace demands and expectations further exacerbated emotional and physical strain.ConclusionWomen with POI in Germany experience significant gaps in medical information, psychosocial support, and societal awareness. The findings underscore the importance of empathetic, patient-centered diagnostic processes, accessible information resources, and multiprofessional counseling services. Increasing public and workplace awareness is essential to reduce stigma and improve the quality of life for affected women.