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Illness experience and (unmet) needs of women with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH): a qualitative analysis of an online forum.

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Title: Illness experience and (unmet) needs of women with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH): a qualitative analysis of an online forum.
Authors: Di Mattei, Valentina Elisabetta (AUTHOR), Taranto, Paola (AUTHOR), Perego, Gaia (AUTHOR), Caneva, Margherita (AUTHOR), Parma, Marta (AUTHOR), Fontana, Eleonora (AUTHOR), Candiani, Massimo (AUTHOR), Montali, Lorenzo (AUTHOR)
Source: Psychology & Health. Jan2026, Vol. 41 Issue 1, p53-75. 23p.
Subjects: Adolescent development, Attitudes toward illness, Mayer-Rokitansky-Kuster-Hauser syndrome, Qualitative research, Identity crises (Psychology), Health, Affinity groups, Internet, Age distribution, Emotions, Judgment sampling, Information resources, Descriptive statistics, Thematic analysis, Patient-centered care, Vaginal diseases, Patient-professional relations, Shock (Pathology), Medical needs assessment, Women's health, Social support, Menstruation, Interpersonal relations, Data analysis software, Social stigma, Mental depression, Disclosure, Health care teams, Transition to adulthood, Evaluation, Psychosocial factors
Abstract: Objective: Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a congenital condition characterized by the underdevelopment or complete absence of the uterus and the upper part of the vagina. Diagnosis is commonly made during adolescence, a sensitive period for psychophysical development, following the absence of menstruation. Having MRKH syndrome can have a profound and multifaceted psychosocial impact that characterizes these women's subjective experiences, although it continues to be qualitatively understudied. This article explores the lived experience of women with MRKH spontaneously recounted on an online support forum. The aim was to gain insight into the features of the syndrome experience to understand deeply the emotional and social impact of the condition and the individual needs expressed online. Methods: Using a naturalistic observation stance, data was collected from an online support forum for MRKH women and systematically analyzed using thematic analysis. Results: Four main interconnected themes are identified: the impact of being diagnosed with MRKH, the difficult interaction with the medical environment, challenging social relationships, and the unmet needs of MRKH women. Conclusion: A multidisciplinary and person-centered approach that provides effective and sensitive management of the condition and its psychosocial implications, is essential. Recommendations for future research and practical clinical implications for healthcare professionals are proposed. [ABSTRACT FROM AUTHOR]
Copyright of Psychology & Health is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Illness experience and (unmet) needs of women with Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH): a qualitative analysis of an online forum.
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  Data: <searchLink fieldCode="AR" term="%22Di+Mattei%2C+Valentina+Elisabetta%22">Di Mattei, Valentina Elisabetta</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Taranto%2C+Paola%22">Taranto, Paola</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Perego%2C+Gaia%22">Perego, Gaia</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Caneva%2C+Margherita%22">Caneva, Margherita</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Parma%2C+Marta%22">Parma, Marta</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Fontana%2C+Eleonora%22">Fontana, Eleonora</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Candiani%2C+Massimo%22">Candiani, Massimo</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Montali%2C+Lorenzo%22">Montali, Lorenzo</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Psychology+%26+Health%22">Psychology & Health</searchLink>. Jan2026, Vol. 41 Issue 1, p53-75. 23p.
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  Data: <searchLink fieldCode="DE" term="%22Adolescent+development%22">Adolescent development</searchLink><br /><searchLink fieldCode="DE" term="%22Attitudes+toward+illness%22">Attitudes toward illness</searchLink><br /><searchLink fieldCode="DE" term="%22Mayer-Rokitansky-Kuster-Hauser+syndrome%22">Mayer-Rokitansky-Kuster-Hauser syndrome</searchLink><br /><searchLink fieldCode="DE" term="%22Qualitative+research%22">Qualitative research</searchLink><br /><searchLink fieldCode="DE" term="%22Identity+crises+%28Psychology%29%22">Identity crises (Psychology)</searchLink><br /><searchLink fieldCode="DE" term="%22Health%22">Health</searchLink><br /><searchLink fieldCode="DE" term="%22Affinity+groups%22">Affinity groups</searchLink><br /><searchLink fieldCode="DE" term="%22Internet%22">Internet</searchLink><br /><searchLink fieldCode="DE" term="%22Age+distribution%22">Age distribution</searchLink><br /><searchLink fieldCode="DE" term="%22Emotions%22">Emotions</searchLink><br /><searchLink fieldCode="DE" term="%22Judgment+sampling%22">Judgment sampling</searchLink><br /><searchLink fieldCode="DE" term="%22Information+resources%22">Information resources</searchLink><br /><searchLink fieldCode="DE" term="%22Descriptive+statistics%22">Descriptive statistics</searchLink><br /><searchLink fieldCode="DE" term="%22Thematic+analysis%22">Thematic analysis</searchLink><br /><searchLink fieldCode="DE" term="%22Patient-centered+care%22">Patient-centered care</searchLink><br /><searchLink fieldCode="DE" term="%22Vaginal+diseases%22">Vaginal diseases</searchLink><br /><searchLink fieldCode="DE" term="%22Patient-professional+relations%22">Patient-professional relations</searchLink><br /><searchLink fieldCode="DE" term="%22Shock+%28Pathology%29%22">Shock (Pathology)</searchLink><br /><searchLink fieldCode="DE" term="%22Medical+needs+assessment%22">Medical needs assessment</searchLink><br /><searchLink fieldCode="DE" term="%22Women's+health%22">Women's health</searchLink><br /><searchLink fieldCode="DE" term="%22Social+support%22">Social support</searchLink><br /><searchLink fieldCode="DE" term="%22Menstruation%22">Menstruation</searchLink><br /><searchLink fieldCode="DE" term="%22Interpersonal+relations%22">Interpersonal relations</searchLink><br /><searchLink fieldCode="DE" term="%22Data+analysis+software%22">Data analysis software</searchLink><br /><searchLink fieldCode="DE" term="%22Social+stigma%22">Social stigma</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+depression%22">Mental depression</searchLink><br /><searchLink fieldCode="DE" term="%22Disclosure%22">Disclosure</searchLink><br /><searchLink fieldCode="DE" term="%22Health+care+teams%22">Health care teams</searchLink><br /><searchLink fieldCode="DE" term="%22Transition+to+adulthood%22">Transition to adulthood</searchLink><br /><searchLink fieldCode="DE" term="%22Evaluation%22">Evaluation</searchLink><br /><searchLink fieldCode="DE" term="%22Psychosocial+factors%22">Psychosocial factors</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: Objective: Mayer-Rokitansky-Küster-Hauser syndrome (MRKH) is a congenital condition characterized by the underdevelopment or complete absence of the uterus and the upper part of the vagina. Diagnosis is commonly made during adolescence, a sensitive period for psychophysical development, following the absence of menstruation. Having MRKH syndrome can have a profound and multifaceted psychosocial impact that characterizes these women's subjective experiences, although it continues to be qualitatively understudied. This article explores the lived experience of women with MRKH spontaneously recounted on an online support forum. The aim was to gain insight into the features of the syndrome experience to understand deeply the emotional and social impact of the condition and the individual needs expressed online. Methods: Using a naturalistic observation stance, data was collected from an online support forum for MRKH women and systematically analyzed using thematic analysis. Results: Four main interconnected themes are identified: the impact of being diagnosed with MRKH, the difficult interaction with the medical environment, challenging social relationships, and the unmet needs of MRKH women. Conclusion: A multidisciplinary and person-centered approach that provides effective and sensitive management of the condition and its psychosocial implications, is essential. Recommendations for future research and practical clinical implications for healthcare professionals are proposed. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
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  Data: <i>Copyright of Psychology & Health is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=190302900
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      – Type: doi
        Value: 10.1080/08870446.2024.2390647
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      – Code: eng
        Text: English
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      – SubjectFull: Adolescent development
        Type: general
      – SubjectFull: Attitudes toward illness
        Type: general
      – SubjectFull: Mayer-Rokitansky-Kuster-Hauser syndrome
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      – SubjectFull: Qualitative research
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      – SubjectFull: Affinity groups
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      – SubjectFull: Internet
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      – SubjectFull: Age distribution
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      – SubjectFull: Emotions
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      – SubjectFull: Judgment sampling
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      – SubjectFull: Information resources
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      – SubjectFull: Descriptive statistics
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      – SubjectFull: Thematic analysis
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      – SubjectFull: Patient-centered care
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      – SubjectFull: Vaginal diseases
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      – SubjectFull: Women's health
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      – SubjectFull: Menstruation
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      – SubjectFull: Transition to adulthood
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