136 Chapter 8 a timely manner will result in identity formation and empowerment [13, 26]. Qualitative research demonstrated that narratives reveal the challenges faced by patients with HMB and (unknown) bleeding disorders at all ages [26-31]. Incorporating patients’ perspectives through free-text responses in validated questionnaires like the self-BAT empowers patients, encouraging a humanistic perspective of gynaecology and health care in general, and guides to more patient-centered care approaches. This approach could potentially be explored to evaluate other closed-ended screening tools or study questionnaires. Taking in consideration that the route to the diagnosis of bleeding disorders in patients with HMB can be explained as a multidimensional health care issue [24, 25], we explored the perspectives of patients with VWD on the support received from health care providers (chapter 6). First, these women often felt stonewalled that diagnosis was delayed until a further bleeding complication occurred, for instance after surgery. In our focus groups, only 3 of 11 women had VWD diagnosed before surgery. Dutton et al. (Br J Gen Prac, 2023) also described in their qualitative study in primary care in the United Kingdom (UK) that women are frustrated by the lack of a medical explanation for HMB. When pathology is identified, women can better understand their HMB. The authors endorse that experiences of medical treatments are strongly influenced by patient-centered communication in this context [32]. Second, the accessibility and continuity of supportive care is most important for these women. The participants suggested that working in one national electronic health care system could be a solution to solve this problem (chapter 6). This solution applies not only to issues like HMB or bleeding disorders but extends to the whole health care system in the Netherlands. Therefore, it is important to recognize the interdisciplinary nature of the diagnostic process where connecting with other professionals and sharing knowledge can make a major practical difference to the challenges faced by women and girls with bleeding disorders [33]. We conclude that many factors determine the timely diagnosis and treatment in women with bleeding disorders and gynecological problems. However, these factors do not work in isolation from social, political, and economic influences [34,35]. The societal and economic costs of women being incapacitated every month has an effect on everyone [24]. What impact does a narrative medicine approach using site-specific arts have on healthcare providers’ awareness of stigmatization, and how do women benefit from these initiatives? HMB prevents women from living their lives the way they want to. It affects their relationships, education, careers, reproductive wishes, social life and mental health [24]. However, women often normalize their experience underlining persisting societal taboos about menstruation and reflecting low general awareness of HMB as a treatable condition [32]. It is not uncommon for patients with bleeding disorders to feel that their HMB is ‘no worse’ than their mother’s or sister’s and is therefore considered ‘normal’ [33]. Education about what is considered a normal amount of menstrual blood loss is therefore important to enable young women to acknowledge that they may have HMB and to allow them to openly share their experiences
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