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

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A qualitative study of eight German women with premature ovarian insufficiency identified unmet needs for medical information, counseling, and social support alongside workplace challenges.

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This qualitative study examined the information, counseling, and support needs of eight women in Germany diagnosed with premature ovarian insufficiency. Through episodic telephone interviews, researchers identified significant gaps in current healthcare provision, noting that patients often experience delayed diagnoses and insufficient psychosocial guidance regarding hormone replacement therapy. The findings highlight a strong demand for interdisciplinary care models that address medical, psychological, and social aspects to improve patient well-being. Relevance to endometriosis: listed as one indication for GnRH antagonists, though the paper's main focus is uterine fibroids.

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Abstract

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.
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Intro

Menopause is a hormonal transition process that affects all individuals with ovaries and a uterus, and thus nearly half of the world’s population. During menopause, hormonal changes occur as the body transitions from the reproductive to the post-menopausal phase of life. At the present, scientific literature does not offer one uniform definition of menopause. However, three or four stages are frequently distinguished: premenopause, perimenopause, menopause, and postmenopause. While premenopause refers to the period immediately before the hormonal transition, perimenopause describes the period in which the first hormonal fluctuations and thus changes in the menstrual cycle take place. During this period, the first symptoms, such as hot flashes, may also occur. Finally, menopause refers to the last few days of the final menstrual period. This is determined retroactively if no further bleeding occurs within 12 months. On average, in high-income countries, people with ovaries and uteruses experience their last menstrual period between the ages of 50 and 51. 1 The phase of postmenopause begins with the last menstrual period and denotes the end of reproductive fertility. In this phase, menstrual bleeding ceases; however, hot flashes and sleep disturbances may still occur, especially in the early stages of postmenopause. 2 In medicine, menopause occurring before the age of 40 is referred to as premature ovarian insufficiency (POI). Current meta-analyses show a POI prevalence of 3.5–3.7% among all women under the age of 40—significantly higher than previously assumed (earlier estimates: approx. 1%). This corresponds to approximately 3,500–3,700 affected women per 100,000 women in the relevant age group. International comparisons show regional differences between industrialized and developing countries, as well as an increasing prevalence of POI over the last 20 years. 3 , 4 Characteristics include amenorrhea and estrogen deficiency, with ovarian activity observed in about a quarter of cases. 5 The etiology is multifactorial; in addition to genetic, autoimmune, and metabolic causes, iatrogenic factors may play a role. 6 Other factors thought to contribute to POI include prolonged stress resulting from adverse life events related to work, family, and sleep problems. 7 However, in 70-90% of cases, the etiology remains unclear (idiopathic). 8 POI is associated with an increased risk of osteoporosis and cardiovascular disease. 9 , 10 In addition, the rate of spontaneous pregnancy is 5%, which is why women with POI who wish to have children often resort to reproductive medical procedures. POI is also associated with an increased risk of depressive symptoms, reduced self-esteem and life satisfaction, and increased stress perception; in addition, the diagnosis can negatively affect body image and perception of age. 11 – 13 Overall, the sudden hormonal transition represents a very vulnerable period in the lives of those who experience it, which can be characterized by feelings such as grief, anger, shame, and feelings of loss, as well as concerns about stigmatization by the social environment and an associated increased mortality rate. 12 , 14 – 16 In addition, questions about one’s identity as a woman, age, and life plans often become relevant. 17 , 18 Compared to research on menopausal experiences in middle age, there is currently limited data available on the experience of POI, most of which comes from Anglo-American countries. These studies show that the diagnosis is often experienced as an unexpected biographical turning point, accompanied by shock, grief, fear, and feelings of isolation. 17 – 19 Central themes are infertility, an unfulfilled desire to have children, and a perceived loss of femininity and attractiveness. 20 , 21 The interpretation and integration of the experience into one’s self-concept depend largely on cultural notions of femininity, age, and reproduction. 22 International studies also clearly show that the care situation for people with POI is inadequate. Diagnosis is often delayed, and education and psychosocial support are described as insufficient. 18 , 22 , 23 Although guideline-based hormone replacement therapy (HRT) is an effective intervention for alleviating symptoms and preventing secondary diseases, many affected individuals are uncertain about its indications, risks, and benefits. 24 Current research therefore emphasizes the need for interdisciplinary, biopsychosocial care concepts that address medical, psychological, and social aspects equally. 6 , 24 In Germany, there is currently a lack of data on the healthcare needs of those affected. This article addresses this gap and explores the information, counseling, and support needs of women with POI in Germany. 25 To capture the subjective experiences and perspectives of those affected, this study employs a qualitative approach and, following a postpositivist paradigm, qualitative content analysis is used to systematically examine the information, counseling, and support needs of women with POI in Germany. The study was conducted between April and September 2017 at the University of Bielefeld, Germany.

Methods

Inclusion criteria were: a diagnosis of POI, residence in Germany and sufficient German language skills to participate in an interview. Participants additionally had to be willing to provide informed consent. Exclusion criteria included: inability to participate in a telephone interview due to language or cognitive barriers and absence of a confirmed POI diagnosis. Women with POI were recruited through various channels. A total of eight women were recruited for qualitative interviews. Six women were recruited via posts on the internet. These were published in Facebook groups on the topic of menopause and in internet forums where women had exchanged information about POI. One woman was recruited via notices in a gynecological practice. Another woman was recruited via personal contacts. The women interviewed were between 28 and 38 years old at the time of diagnosis, with a median age of 32.5 years at the time of diagnosis. For seven of the eight women, the date of diagnosis was a median of seven years earlier. In seven of the women surveyed, the cause of POI was unclear, while one woman entered menopause prematurely due to the surgical removal of an ovary Table 1 . Table 1. Demographic characteristics of study participants. Participant Age at time of interview (years) Age at diagnosis (years) Onset of menopause Type of diagnosis Marital status I1 40 38,5 37 Idiopathic POI Unknown I2 - - 35 Idiopathic POI Divorced I3 45 40 36 Iatrogenic POI (removal of the uterus and ovaries) Married I4 36 - 32 Idiopathic POI Married I5 35 28 26 Idiopathic POI Single I6 33 29 29 Idiopathic POI, severe endometriosis Partnered I7 49 30 30 Idiopathic POI Married I8 45 33 33 Idiopathic POI Married Demographic characteristics of study participants. Eight episodic interviews were conducted (May-June 2017) to assess information, counseling, and support needs. The episodic interview format combines narrative passages with guided questions, enabling context-related narratives about personal experiences. 26 In contrast to narrative interviews, which aim to capture comprehensive life stories, episodic interviews focus on specific situations in which relevant experiences were made. An interview guideline is used to structure the conversation without restricting the openness of the narratives. The interviewee’s free narratives should be episodic, situational and oriented toward the underlying scheme of the interview based on the underlying interview schedule. 27 It is left entirely up to the interviewee to decide which specific situations they consider subjectively relevant to the subject area and whether they prefer to recount them in a narrative or descriptive manner. The semi-structured interview guide was developed based on the existing literature and the study objectives. The interview guide included questions on diagnostic experiences, information needs, psychosocial support and social support from family, friends and colleagues (see Supplemental file 1 ). The interview guide was pilot-tested with one woman from the target group to assess comprehensibility and relevance. For reasons of economy and Germany-wide recruitment of participants, the interviews were conducted and recorded via telephone. Prior to the interviews, all participants received written information about the study and a consent form with information on their rights, obligations, and data protection. In addition, ethical approval was obtained from the Ethics Committee of Bielefeld University (application number 2017-098). In view of the sensitive nature of the topic, respondents were provided with references to further information and support services as needed. Analysis was carried out using content analysis, which aims for a structured reduction of data material to its most research-relevant aspects. 28 The approach combines various techniques suitable for guided interviews and is characterized by its openness regarding theoretical presumptions. This openness makes it possible to capture the subjective meanings of the respondents and identify new topics or perspectives—a particularly suitable approach for episodic interviews. The analytical categories were formed inductively. The transcribed interviews were read repeatedly to identify central themes and patterns. In accordance with the hermeneutic-interpretative approach, relevant content was noted and recorded, in part via so-called in vivo codes in order to preserve the original language and thus the subjective perspective of the interviewees. 29 First, the material was analyzed on a case-by-case basis; similarities and differences between the interviews were recorded comparatively. The audio recordings were used for contextualization as needed. The main analytical categories, developed inductively, are based on the topics in the interview guideline: 1. Path to diagnosis 2. Information, counseling, and support 3. Variables influencing information, counseling, and support 4. Things desired from healthcare professionals and researchers 1. Path to diagnosis 2. Information, counseling, and support 3. Variables influencing information, counseling, and support 4. Things desired from healthcare professionals and researchers The analytical categories were defined specifically in a coding guideline including anchor examples to ensure consistent coding of text passages. The material was then coded using the software MAXQDA, which served as a supporting tool for documenting and structuring the analytical process. Quantifying overviews of the material (step 4 according to Schmidt 28 ) and in-depth individual case analyses (step 5) were deliberately omitted, as the aim of the study was to present the women’s needs regarding information and support in a structured manner rather than to develop a theoretical analysis. Because the used content analysis method by Schmidt does not specify any explicit quality criteria, Mayring’s criteria for qualitative content analysis was taken into account. 28 , 30 Objectivity in the sense of qualitative research was replaced by intersubjectivity, which was ensured by the involvement of several researchers. 29 To ensure the reliability of the content analysis, particular attention was paid to intercoder reliability by involving other researchers in both the development of categories and their application. To this end, selected transcript excerpts were jointly coded and discussed by students during a seminar on qualitative research methods. 31 The developed coding guide, which included anchor examples, also served to standardize the process and enhance intercoder reliability. Furthermore, intracoder reliability was addressed by recoding the entire material after a period of time had elapsed. Validity was sought through theory-driven and content-based category formation, while, in the interest of intersubjectivity, the analysis process was designed to ensure an intersubjectively comprehensible and as consistent as possible evaluation. To ensure reflexivity, the researchers critically reflected on their own assumptions and potential preconceptions throughout the research process, including within a research class, acknowledging that these factors may have influenced the formulation of research questions, the data collection, and the interpretation of results. Data collection and analysis were conducted iteratively. Data saturation was considered achieved when no substantially new themes, categories, or insights emerged from subsequent interviews and when the existing category system was sufficiently elaborated. After the eighth interview, recurring patterns were observed and no new relevant aspects related to participants’ information, counseling, and support needs emerged, indicating thematic saturation. This article was prepared in accordance with the Standards for Reporting Qualitative Research (SRQR) guidelines. 32

Results

Analysis of the interviews resulted in the identification of four key topics: (1) Initial symptoms and diagnosis, (2) Information and counseling needs, (3) Communication and support in the social environment (4) Experiences in the workplace (1) Initial symptoms and diagnosis, (2) Information and counseling needs, (3) Communication and support in the social environment (4) Experiences in the workplace These topics highlight the individual and structural challenges associated with early onset of menopause and demonstrate the significant need for empathetic, intelligible, and continuous support from professionals and the social environment. The majority of women surveyed reported that they noticed the first signs of POI in changes to their menstrual cycle. The absence of menstruation was often perceived as a key sign that something was wrong. In many cases, hot flashes, mood swings, sleep disturbances, or unexplained emotional instability accompanied these symptoms. What was particularly stressful for those affected was that these symptoms could not initially be attributed to anything specific. Many women described the time until diagnosis as a period of great uncertainty. Severe physical or psychological symptoms that could not be attributed to any cause were particularly challenging for those affected. Several respondents reported that initially, their complaints were not taken seriously or were misinterpreted by doctors. This led to repeated doctor visits during which symptoms were often trivialized or attributed to psychological causes. One respondent described: “I felt totally belittled and completely misunderstood because instead of first looking at what was wrong with me and what could be causing it, they first came up with these strange, well, I felt like, accusations. That I now had to explain myself somehow, that I'm not anorexic or involved in competitive sports or particularly stressed or anything like that, but that I lead a completely normal life, have been in a new relationship for a year, was happy, and didn't have depression or eating disorders or anything. So I had the feeling I somehow had to justify myself because of my blood values” (I8, lines 23-30). “I felt totally belittled and completely misunderstood because instead of first looking at what was wrong with me and what could be causing it, they first came up with these strange, well, I felt like, accusations. That I now had to explain myself somehow, that I'm not anorexic or involved in competitive sports or particularly stressed or anything like that, but that I lead a completely normal life, have been in a new relationship for a year, was happy, and didn't have depression or eating disorders or anything. So I had the feeling I somehow had to justify myself because of my blood values” (I8, lines 23-30). The interview quote shows how a person experiences a medical encounter as degrading because, instead of an understanding search for causes, preconceptions, pressure to justify oneself, and a lack of recognition of their reality dominate. Often, searching for the cause of the symptoms would involve many doctor visits: “I went through this for eight months. I really went from doctor to doctor. Everyone told me: there's nothing wrong. […] Um, they all said there’s nothing wrong with me, that I was imagining it. They wanted to give me, um, antidepressants and other medications” (I3, lines 8-11). “I went through this for eight months. I really went from doctor to doctor. Everyone told me: there's nothing wrong. […] Um, they all said there’s nothing wrong with me, that I was imagining it. They wanted to give me, um, antidepressants and other medications” (I3, lines 8-11). For many women, the medical confirmation of the diagnosis was the first thing that brought relief, as they were then able to classify their symptoms for the first time. At the same time, the diagnosis was associated with sadness or a feeling of loss, especially for those respondents who actively wanted to have children at the time of diagnosis. This also makes it clear that for many of the respondents, the diagnosis was not only a decisive medical event, but also a biographical one. At the same time, the women emphasized the importance of empathy, sensitivity, and continuous support from doctors. In particular, women with an unfulfilled desire to have children needed time and emotional support to accept the diagnosis and develop new perspectives. Women who received empathetic support during the diagnostic process reported greater trust in the healthcare system and a more active approach to coping with their situation. A trusting doctor-patient relationship proved to be a key factor in accepting the diagnosis and individually beginning to come to terms with the new life situation. Upon diagnosis, most women felt an acute need for reliable information. Many initially felt inadequately informed and reported that doctors had little time for explanations or further counseling. In particular, hormonal background information and possible consequences for fertility, sexuality, and possible long-term health effects remained unclear to many. “But even today, I still don’t understand all these hormonal processes, and I wish someone could explain them in a way that a normal woman could understand and comprehend, because when I was sitting there with this doctor, who of course had studied the subject, he overwhelmed me with so much information that my head was spinning, um, I still didn’t get it” (I8, lines 68-72). “But even today, I still don’t understand all these hormonal processes, and I wish someone could explain them in a way that a normal woman could understand and comprehend, because when I was sitting there with this doctor, who of course had studied the subject, he overwhelmed me with so much information that my head was spinning, um, I still didn’t get it” (I8, lines 68-72). The quote illustrates that when doctors pass on information, accessible communication is especially important. The quote also gives the impression that the conversation was not very dialogical and the explanation therefore not very helpful. One respondent reported that she was initially left alone with the diagnosis and that her question about possible actions remained unanswered by the medical staff in endocrinology: “They took another blood sample and then said, ‘Yes, that’s right, it’s climacterium praecox.’ And then I said, 'What can I do now?’ And the only answer I got was, ‘You already have four children, what do you want here?’ (laughs) That was the end of the story. So, I didn’t find out much more about it” (I7, lines 35-40). “They took another blood sample and then said, ‘Yes, that’s right, it’s climacterium praecox.’ And then I said, 'What can I do now?’ And the only answer I got was, ‘You already have four children, what do you want here?’ (laughs) That was the end of the story. So, I didn’t find out much more about it” (I7, lines 35-40). In addition to the lack of clarification offered, this quote highlights the medical staff’s narrow reduction of POI to the inability to have children. The desire for understandable explanations of hormonal processes and comprehensive information on treatment options beyond hormone replacement therapy took center stage. Many of the respondents expressed a desire for holistic and continuous counseling with consideration of psychosocial aspects. Due to the lack of professional information, many women tried to satisfy their need for information with online forums, advice and specialist literature, or conversations with their own mothers. Communication with other affected women—often via social media—was found to be particularly valuable in terms of receiving emotional support and practical advice. At the same time, some women reported that the abundance of contradictory information on the internet could lead to additional uncertainty. The severity of the symptoms and the personal impact determined how intensively information was sought. The need for information was closely related to the individual’s life situation: women with an unfulfilled desire to have children specifically sought medical options for preserving fertility, while others were more interested in alleviating physical symptoms or achieving psychological stability. The following quote emphasizes the desire for psychotherapeutic support and personal communication with other affected individuals: “Therapy for coping and, ideally, a couple weeks with like-minded people, in a therapy facility or so, either outpatient or inpatient, where you can talk with like-minded people who share the same experience, um, where you can learn different strategies or, um, just be given some time” (I5, lines 248-253). “Therapy for coping and, ideally, a couple weeks with like-minded people, in a therapy facility or so, either outpatient or inpatient, where you can talk with like-minded people who share the same experience, um, where you can learn different strategies or, um, just be given some time” (I5, lines 248-253). The quote also shows that time is an essential factor in processing and finding one’s own way of handling the POI diagnosis. Overall, the interviewees’ statements make it clear that women with POI require structured counseling services tailored to their needs that go beyond a one-time medical consultation. The results of this research show that social support is a key resource in dealing with POI. Sharing experiences with partners, friends, or one’s own mother was described as helpful in coming to terms with the diagnosis. This is also reflected in the following quote: “Well, I was pretty withdrawn at the time. But I always told my family: don’t let me get too down, take care of me […], and um, they supported me well and caught me when I fell.” (I4, lines 102-106). “Well, I was pretty withdrawn at the time. But I always told my family: don’t let me get too down, take care of me […], and um, they supported me well and caught me when I fell.” (I4, lines 102-106). On the other hand, two women reported feeling that other women did not take their menopausal symptoms seriously due to their young age. One of them, who entered menopause at the age of 30, reported that her hot flashes were sometimes dismissed by her friends as attention seeking, or that they were even made fun of. She described how this lack of understanding usually caused her anger. Some of the respondents also described perceiving the topic of menopause as taboo, which made dealing with POI more difficult in their social environments: “But basically, it really is the case that you just don’t talk about it and you keep it to yourself and try to get through it somehow. And I just wish that it weren’t such a taboo subject anymore. I think that would make it a little easier for women who are new to the topic” (I2, lines 198-203). “But basically, it really is the case that you just don’t talk about it and you keep it to yourself and try to get through it somehow. And I just wish that it weren’t such a taboo subject anymore. I think that would make it a little easier for women who are new to the topic” (I2, lines 198-203). Many of the women wished for a more open discourse for the sake of reducing prejudice and stigmatization. In their view, if society were to deal the topic in a more normalized way, it could help in reaching those affected at an earlier point in time and reducing the shame associated with talking about physical or reproductive changes. Some of the women sought out self-help groups or online communities to share their experiences and find emotional relief. It became apparent that sharing experiences was particularly helpful when conversation partners were in similar life situations. Women who did not find a connection there, on the other hand, would seclude themselves again. Despite their desire for communication, some women also expressed ambivalence: they did not want to burden others with their concerns or felt overwhelmed in groups where very emotional accounts were shared. In addition, geographical distances and time constraints were barriers to personal contact. Professional contexts also played a significant role in coping with POI. Many women described how physical and psychological ailments—exhaustion, hot flashes, concentration problems, and mood swings in particular—impeded their performance. The individual degree of stress depended heavily on the working conditions and social climate at the specific workplace. One interviewee described being so physically and psychologically impaired that she felt unable to complete her studies. Another respondent highlighted the flexibility of working as a self-employed professional, together with her husband, as a key factor in reducing her stress: “Our society is so performance-oriented and we’re all supposed to be functioning constantly. Fortunately, my husband and I are self-employed, and I was able to take breaks. There were phases in which I couldn’t do a lot.” (I8, lines 361-364) “Our society is so performance-oriented and we’re all supposed to be functioning constantly. Fortunately, my husband and I are self-employed, and I was able to take breaks. There were phases in which I couldn’t do a lot.” (I8, lines 361-364) Overall, the interviews showed that women who encountered understanding and flexibility were better able to cope with their afflictions. The possibility of adjusting working hours or working from home temporarily was viewed positively. The results show a lack of awareness and sensitivity in the workplace regarding hormonal changes and their effects on well-being. The women expressed a desire for open and flexible working environments so they can better cope with the physical and psychological stresses they face. The results show that open communication and organizational flexibility are key to ensuring that women with POI can continue their professional lives. Increasing awareness among managers and coworkers could help reduce taboos around the topic and create working conditions that promote health on a long-term basis.

Conclusion

These results show a high demand for understandable information, empathetic medical care, and social support. A lack of social visibility and awareness—both in healthcare and in the workplace—increase the burden on those affected. An integrative approach that combines medical, psychosocial, and work-related aspects therefore appears to be key to improving the quality of life of affected women in the long term. This study shows that women with POI are often inadequately informed and that counseling does not always meet their individual needs. The phase between the first symptoms and diagnosis is particularly stressful and requires an empathetic, patient-centered medical approach. Emotional support, social networks, and the handling of taboos (in addition to medical factors) are crucial to the experiences of those affected. Women’s informational needs often remain unmet due to both gaps in medical knowledge and a lack of accessible, understandable materials in German-speaking countries. There is a need for low-threshold, evidence-based information services that not only convey biomedical background information but also sensitively address psychosocial and emotional aspects. In addition, there is a pronounced need for individual and multi-professional support that integrates psychological, social, and medical components. Promotion of social support systems, stigma reduction, and the systematic integration of psychological counseling are central elements of needs-based care. Overall, the results illustrate that women with POI experience complex medical, emotional, and social challenges. To support women with POI, it must be considered that menopause is more than a medical challenge—it is also a social challenge.

Discussion

This study is the first to examine in detail the information, counseling, and support needs of women in Germany who have entered menopause before the age of 40. The results show that the period between the first symptoms and diagnosis is a phase of particular vulnerability. These findings are consistent with international studies showing that a lack of information and insufficient sensitivity from medical professionals increase the emotional stress during this time. 33 , 34 A key finding from the interviews is the recurring experience of a long and stressful journey to diagnosis, often accompanied by misdiagnosis or inadequate communication. This phenomenon is not new: A study from 2005 emphasizes that the manner in which a diagnosis is communicated has a significant impact on one’s emotional experience. 19 Accordingly, the results of this study also indicate that an empathetic attitude and sufficient information are central components of patient-oriented care. Furthermore, it has been shown that many women have a strong need for information which is often not met in doctor consultations. For many of those affected, the internet is an obvious but not always satisfactory source of information. These findings correspond with the study from 2017 which points to a lack of high-quality information on POI. 35 Women with severe physical or psychological symptoms and women with an unfulfilled desire to have children were shown to have a particularly pronounced need for valid, understandable, evidence-based information. With regard to counseling, the paper makes it clear that women’s needs are very heterogeneous and go beyond pure medical issues. In addition to education about physiological processes, there is a need for psychological support, especially for women with an unfulfilled desire to have children. These findings support earlier research pointing to the importance of a holistic, biopsychosocial approach. 12 , 36 , 37 Finally, the study emphasizes the role of social support as a key resource in dealing with POI. Support from partners, friends, and colleagues was experienced as relieving, while lack of understanding in one’s social environment and treatment of the topic as taboo increased the burden. These results are consistent with the findings of Singer and Hunter, who identify self-help and mutual empowerment as key to destigmatizing different phases of life for women. 21 These results clearly show that women with POI are a group of people with special care requirements that has received little attention in medical and health policy practice to date. For medical practice, there is a need for early, empathetic, and continuous support that also considers patients’ psychological situations. If the curriculum of gynecological education and further training programs for specialists would include the topic of menopause as well as POI as a specific case, the sensitivity and diagnostic competence of medical personnel could be improved significantly. In addition, the development of structured information and counseling services should be a priority. This includes both written materials in non-specialist terms and online services that provide scientifically sound information. The development of a central information website modeled on the British “Daisy Network” could contribute to better networking between patients, physicians, and researchers. Current efforts to establish a national POI registry could significantly advance research on POIs, which has been underrepresented to date. 38 From a public health perspective, social education and destigmatization is needed. Open discourse about menopause—regardless of age—can help reduce stigma and promote social support. Similarly, workplace health promotion programs should take aspects of reproductive health into account in order to provide targeted support for women in the workplace. The results underscore the need for research on the psychological and social consequences of POI. Future studies should examine how socioeconomic status, cultural background, and family structures influence people’s experiences and how they cope with the diagnosis. It is also sensible to conduct empirical evaluations on the effectiveness of various counseling and support models, such as interdisciplinary care concepts or digital peer support services. In addition, greater interdisciplinary collaboration between gynecology, psychology, and social work are desirable in order to comprehensively address the needs of affected women and resolve any deficiencies in care. Several limitations of this study should be acknowledged. First, as a qualitative study with a small sample size (n = 8), the findings are not intended to be statistically representative but rather to provide in-depth insights into the lived experiences of women with POI. While this approach allows for a nuanced understanding, the transferability of the findings to the broader population of affected women in Germany is limited. Second, the sample was relatively homogeneous with regard to socio-demographic characteristics, particularly in terms of race, socioeconomic status, and disability. This limits the ability to capture diverse and potentially intersecting experiences of women with POI. Future research should adopt an intersectional perspective to better understand how structural inequalities shape access to information, counseling, and support. Third, recruitment via online forums, social media, and personal networks may have introduced selection bias, as participants who are more engaged, digitally connected, or actively seeking support may be overrepresented. Women with limited access to such platforms or lower health literacy may therefore be underrepresented. Fourth, the use of telephone interviews, while practical and flexible, may have influenced the depth and richness of the data compared to face-to-face interactions, particularly regarding sensitive topics. Non-verbal cues could not be captured, which may have affected the interpretation of participants’ experiences. Finally, although measures were taken to enhance analytical rigor (e.g., use of a coding guide and intercoder procedures), qualitative analysis remains interpretative and may be influenced by researcher perspectives. Despite these limitations, the study provides important initial insights into the care situation of women with POI in Germany and highlights key areas for future, particularly quantitative and mixed-methods, research.

Supplementary Material

Supplemental material for Information, counseling and support needs of women with premature ovarian insufficiency: Qualitative findings from Germany by Johanna Budke in Women’s Health.

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MeSH descriptors

Counseling Health Services Needs and Demand Primary Ovarian Insufficiency Primary Ovarian Insufficiency Primary Ovarian Insufficiency Social Support Adult Female Germany Humans Interviews as Topic Qualitative Research

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