Schlagworte
women’s needs
institutional support
health education
holistic healthcare
Zitationsvorschlag
Abstract
The aim of this article was to explore the experiences of women with endometriosis, identify their needs, and assess their perception of how these needs are being met, particularly in the context of institutional support. The study utilized a biographical method and a narrative-biographical technique, enabling an in-depth understanding of the participants’ individual experiences. The research sample consisted of 23 women aged 22 to 33 years, residing in both large cities and smaller localities, all diagnosed with endometriosis. The findings revealed that the most significant challenges faced by women with endometriosis include a prolonged diagnostic process, limited access to qualified specialists, and the lack of reimbursement for supportive therapies such as psychotherapy, physiotherapy, and diet therapy. Participants also expressed a need for greater emotional and social support to reduce feelings of isolation and stigmatization. Support groups and non-governmental organizations emerged as critical sources of assistance, bridging gaps in the public healthcare system. Recommendations derived from the study emphasize the need to develop the healthcare system by increasing the number of specialists, reducing waiting times for consultations, and introducing reimbursement for supportive therapies. Additionally, non-governmental organizations should intensify their educational and supportive activities, and social campaigns should focus on destigmatizing endometriosis.
Literaturhinweise
Adilbayeva, A., Kunz, J. (2024). Pathogenesis of endometriosis and endometriosis-associated cancers. International Journal of Molecular Sciences, 25(14), 7624. DOI: https://doi.org/10.3390/ijms25147624
As-Sanie, S., Black, R., Giudice, L.C., Gray Valbrun, T., Gupta, J., Jones, B., Laufer, M.R., Milspaw, A.T., Missmer, S.A., Norman, A., Taylor, R.N., Wallace, K., Williams, Z., Yong, P.J., Nebel, R.A. (2019). Assessing research gaps and unmet needs in endometriosis. American Journal of Obstetrics & Gynecology, 221(2), 86–94. DOI: https://doi.org/10.1016/j.ajog.2019.02.033
Bernuit, D., Ebert, A.D., Halis, G., Strothmann, A., Gerlinger, C., Geppert, K., Faustmann, T. (2011). Female perspectives on endometriosis: Findings from the uterine bleeding and pain women’s research study. Journal of Endometriosis, 3(2), 73–85. DOI: https://doi.org/10.5301/JE.2011.8525
BMC Medicine. (2023). Shining a light on endometriosis: Time to listen and take action. BMC Medicine, 21(1), 107. DOI: https://doi.org/10.1186/s12916-023-02820-y
Cousins, F.L., McKinnon, B.D., Mortlock, S., Fitzgerald, H.C., Zhang, C., Montgomery, G.W., Gargett, C.E. (2023). New concepts on the etiology of endometriosis. Journal of Obstetrics and Gynaecology Research, 49(4), 1090–1105. DOI: https://doi.org/10.1111/jog.15549
Culley, L., Law, C., Hudson, N., Denny, E., Mitchell, H., Baumgarten, M., Raine-Fenning, N. (2013). The social and psychological impact of endometriosis on women’s lives: A critical narrative review. Human Reproduction Update, 19(6), 625–639. DOI: https://doi.org/10.1093/humupd/dmt027
De Corte, P., Klinghardt, M., von Stockum, S., Heinemann, K. (2025). Time to diagnose endometriosis: Current status, challenges and regional characteristics – a systematic literature review. BJOG: An International Journal of Obstetrics & Gynaecology, 132(2), 118–130. DOI: https://doi.org/10.1111/1471-0528.17973
Fernando, R. (2024). The effect of endometriosis on the fertility of women. World Journal of Biology Pharmacy and Health Sciences, 19(1), 320–331. DOI: https://doi.org/10.30574/wjbphs.2024.19.1.0441
Fourquet, J., Báez, L., Figueroa, M., Iriarte, R.I., Flores, I. (2011). Quantification of the impact of endometriosis symptoms on health-related quality of life and work productivity. Fertility and Sterility, 96(1), 107–112. DOI: https://doi.org/10.1016/j.fertnstert.2011.04.095
Fourquet, J., Gao, X., Zavala, D., Orengo, J.C., Abac, S., Ruiz, A., Laboy, J., Flores, I. (2010). Patients’ report on how endometriosis affects health, work and daily life. Fertility and Sterility, 93(7), 2424–2428. DOI: https://doi.org/10.1016/j.fertnstert.2009.09.017
Gouesbet, S., Kvaskoff, M., Riveros, C., Diard, É., Pane, I., Goussé-Breton, Z., Valenti, M., Gabillet, M., Garoche, C., Ravaud, P., Tran, V.T. (2023). Patients’ perspectives on how to improve endometriosis care: A large qualitative study within the ComPaRe-Endometriosis e-Cohort. Journal of Women’s Health, 32(4), 463–470. DOI: https://doi.org/10.1089/jwh.2022.0323
Harder, C., Velho, R.V., Brandes, I., Sehouli, J., Mechsner, S. (2024). Assessing the true prevalence of endometriosis: A narrative review of literature data. International Journal of Gynecology & Obstetrics, 167(3), 883–900. DOI: https://doi.org/10.1002/ijgo.15756
Kędzia, M., Basta, P., Czajkowski, K., Gogacz, M., Spaczyński, R., Mroczkowska, B., Stojko, R., Szaflik, T., Szubert, M., Szyłło, K., Zaborowski, M., Sieroszewski, P. (2024). Rekomendacje Polskiego Towarzystwa Ginekologów i Położników dotyczące postępowania u kobiet z endometriozą. Ginekologia i Perinatologia Praktyczna, 9(2), 89–123.
Kowolik, P. (2001). Badania pedagogiczne opierające się na metodzie biograficznej. Nauczyciel i Szkoła, 3–4, 115–121.
Kupisiewicz, C., Kupisiewicz, M. (2009). Słownik pedagogiczny. Wydawnictwo Naukowe PWN.
Kwaśniewska, A. (2022). Endometrioza tematem tabu w szkolnym środowisku. W: W. Heller, A. Nymś-Górna, M. Kaźmierska, M. Wieczorek (red.), Rodzice uczniów w edukacji szkolnej (s. 152–159). Uniwersytet im. Adama Mickiewicza w Poznaniu.
Lamceva, J., Uljanovs, R., Strumfa, I. (2023). The main theories on the pathogenesis of endometriosis. International Journal of Molecular Sciences, 24(5), 4254. DOI: https://doi.org/10.3390/ijms24054254
Leleńska, J., Rutecka, W., Napiórkowska-Orkisz, M. (2022). Endometrioza a jakość życia. Zadania pielęgniarki w opiece nad pacjentką z endometriozą. W: M. Cybulski, C. Łukaszuk, E. Krajewska-Kułak (red.), Interdyscyplinarne wyzwania nauk o zdrowiu (t. 2, s. 42–51). Uniwersytet Medyczny w Białymstoku.
Li, A.D., Bellis, E.K., Girling, J.E., Jayasinghe, Y.L., Grover, S.R., Marino, J.L., Peate, M. (2020). Unmet needs and experiences of adolescent girls with heavy menstrual bleeding and dysmenorrhea: A qualitative study. Journal of Pediatric and Adolescent Gynecology, 33(3), 278–284. DOI: https://doi.org/10.1016/j.jpag.2019.11.007
Łobocki, M. (2000). Metody i techniki badań pedagogicznych. Oficyna Wydawnicza „Impuls”.
Nowak-Dziemianowcz, M. (2008). Podmiot w narracjach. Narracja, autobiografia, tożsamość. Forum Oświatowe (numer specjalny), 20, 181–194.
Parazzini, F., Esposito, G., Tozzi, L., Noli, S., Bianchi, S. (2017). Epidemiology of endometriosis and its comorbidities. European Journal of Obstetrics & Gynecology and Reproductive Biology, 209, 3–7. DOI: https://doi.org/10.1016/j.ejogrb.2016.04.021
Pettersson, A., Berterö, C.M. (2020). How women with endometriosis experience health care encounters. Women’s Health Reports, 1(1), 529–542. DOI: https://doi.org/10.1089/whr.2020.0099
Rubisz, P. (2024). Część II. Ginekolog o endometriozie. Czym jest ta choroba, jak się ją diagnozuje i leczy. W: A. Paluszak, P. Rubisz, D. Olanin (red.), Endometrioza. Nie taka Twoja uroda (s. 103–202). Sensus.
Seear, K. (2009). „Nobody really knows what it is or how to treat it”: Why women with endometriosis do not comply with healthcare advice. Health, Risk & Society, 11(4), 367–385. DOI: https://doi.org/10.1080/13698570903013649
Shoebotham, A., Coulson, N.S. (2016). Therapeutic affordances of online support group use in women with endometriosis. Journal of Medical Internet Research, 18(5), e109. DOI: https://doi.org/10.2196/jmir.5548
Sikka, P., Brar, R. (2021). Etiopatogeneza endometriozy (tłum. M. Izak). W: S. Chopra (red.), M. Zimmer (red. wyd. polskiego), Endometrioza (s. 11–14). Edra Urban & Partner.
Smycz-Kubańska, M. (2021). Udział wybranych chemokin w patogenezie endometriozy [rozprawa na stopień doktora nauk medycznych i nauk o zdrowiu, Śląski Uniwersytet Medyczny w Katowicach]. https://ppm.edu.pl/info.seamps=20&id=SUM0f2090fea465448aa231b50a60309530&lang=pl&pn=1&cid=349529
Sperschneider, M.L., Hengartner, M.P., Kohl-Schwartz, A., Geraedts, K., Rauchfuss, M., Woelfler, M.M., Haeberlin, F., von Orelli, S., Eberhard, M., Maurer, F., Imthurn, B., Imesch, P., Leeners, B. (2019). Does endometriosis affect professional life? A matched case-control study in Switzerland, Germany and Austria. BMJ Open, 9(1), e019570. DOI: https://doi.org/10.1136/bmjopen-2017-019570
van Stein, K., Schubert, K., Ditzen, B., Weise, C. (2023). Understanding psychological symptoms of endometriosis from a research domain criteria perspective. Journal of Clinical Medicine, 12(12), 4056. DOI: https://doi.org/10.3390/jcm12124056
Stępniewska, A.K., Ceccaroni, M., Biela, M., Kamiński, P. (2017). Endometrioza głęboko naciekająca – istotny problem kliniczny w ginekologii. Lekarz Wojskowy, 95(1), 99–105.
Taffs, L., Waters, N., Marino, J., Rapsey, C., Peate, M., Girling, J.E. (2024). Supportive care needs of young adults with endometriosis: An open‐ended online survey and exploration of unmet needs. Health Expectations, 27(5), e70045. DOI: https://doi.org/10.1111/hex.70045
Timkova, V., Mikula, P., Katreniakova, Z., Howick, J., Nagyova, I. (2025). Assessing healthcare needs in endometriosis: A scoping review. Psychology & Health, 1–39. DOI: https://doi.org/10.1080/08870446.2025.2478154
Zgierska, M., Pacocha, N., Jędrychowski, J., Popczyńska, J., Karpowicz, N., Krzyżanowska, M., Kaszucka, J., Raczyńska, A., Kosiec, K., Krzemień, O. (2024). The correlation between endometriosis pain, mental health disorders, and quality of life impact. International Journal of Innovative Technologies in Social Science, 2(42). DOI: https://doi.org/10.31435/rsglobal_ijitss/30062024/8152
Lizenz
Copyright (c) 2024 Anna Kwaśniewska, Marlena Kaźmierska
Dieses Werk steht unter der Lizenz Creative Commons Namensnennung - Keine Bearbeitungen 4.0 International.