‘So many women suffer in silence’: a thematic analysis of women’s written accounts of coping with endometriosis

References

• Altinbas, S. K., Tekin, Y. B., Dilbaz, B., & Dilbaz, S. (2015). Evaluation of quality of life in fertile Turkish women with severe endometriosis. Journal of Obstetrics and Gynaecology, 35, 49–52. doi: 10.3109/01443615.2014.930110
   Web of Science ®Google Scholar
• American College of Obstetricians and Gynecologists. (2010). Management of endometriosis. ACOG Practice Bulletin No. 114. Obstetrics and Gynecology, 116(1), 225–236. doi:10.1097/AOG.0b013e3181e8b073
   Google Scholar
• Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. doi:10.1191/1478088706qp063oa
   Google Scholar
• 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:10.1093/humupd/dmt027
   PubMed Web of Science ®Google Scholar
• Culley, L., Law, C., Hudson, N., Mitchell, H., Raine-Fenning, N., & Denny, E. (2017). A qualitative study of the impact of endometriosis on male partners. Human Reproduction, 32(8),1667–1673. doi:10.1093/humrep/dex221
   PubMed Web of Science ®Google Scholar
• De Graaff, A. A., Hooghe, T. M., Dunselman, G. A. J., Dirksen, C. D., Hummelshoj, L., WERF EndoCost Consortium, & Simoens, S. (2013). The significant effect of endometriosis on physical, mental and social wellbeing: Results from an international cross-sectional survey. Human Reproduction, 28(10), 2677–2685. doi:10.1093/humrep/det284
   PubMed Web of Science ®Google Scholar
• Denny, E. (2004). Women’s experience of endometriosis. Journal of Advanced Nursing, 46(6), 641–648. doi:10.1111/j.1365-2648.2004.03055.x
   PubMed Web of Science ®Google Scholar
• Donovan, J. L., & Blake, D. R. (1992) Patient non-compliance: Deviance or reasoned decision-making? Social Science and Medicine, 34, 507–513. doi:10.1016/0277-9536(92)90206-6
   PubMed Web of Science ®Google Scholar
• Endometriosis UK. (2017). Endometriosis facts and figures. Retrieved August 15, 2017 from https://www.endometriosis-uk.org/endometriosis-facts-and-figures.
   Google Scholar
• Facchin, F., Barbara, G., Saita, E., Mosconi, P., Roberto, A., Fedele, L., & Vercellini, P. (2015). Impact of endometriosis on quality of life and mental health: Pelvic pain makes the difference. Journal of Psychosomatic Obstetrics & Gynecology, 36(4), 135–141. doi:10.3109/0167482X.2015.1074173
   PubMed Web of Science ®Google Scholar
• Facchin, F., Saita, E., Barbara, G., Dridi, D., & Vercellini, P. (2017). “Free butterflies will come out of these deep wounds”: A grounded theory of how endometriosis affects women’s psychological health. Journal of Health Psychology, 23(4), 538–549. doi:10.1177/1359105316688952
   PubMed Web of Science ®Google Scholar
• Friedl, F., Riedl, D., Fessler, S., Wildt, L., Walter, M., Richter, R., … Bottcher, B. (2015). Impact of endometriosis on quality of life, anxiety and depression: An Austrian perspective. Archives of Gynecology and Obstetrics, 292, 1393–1399. doi:10.1007/s00404-015-3789-8
   PubMed Web of Science ®Google Scholar
• Grogan, S., & Mechan, J. (2017). Body image after mastectomy: A thematic analysis of younger women’s written accounts. Journal of Health Psychology, 22(11), 1480–1490.
   PubMed Web of Science ®Google Scholar
• Hewson, C. (2017). Research design and tools for online research. In N. G. Fielding, R. M. Lee, & G. Blank (Eds.), The Sage handbook of online research methods (2nd ed., pp. 57–75). London: Sage. doi:10.4135/9781473957992
   Google Scholar
• Hudson, N., Culley, L., & Law, C. (2016). “We needed to change the mission statement of the marriage”: Biographical disruptions, appraisals and revisions among couples living with endometriosis. Sociology of Health & Illness, 38, 721–735. doi:10.1111/1467-9566.12392
   PubMed Web of Science ®Google Scholar
• Jowett, A., Peel, E., & Shaw, R. (2011). Online interviewing in psychology: Reflections on the process. Qualitative Research in Psychology, 8(4), 354–369. doi:10.1080/14780887.2010.500352
   Google Scholar
• Kelly, M. P., & May, D. (1982). Good and bad patients: A review of the literature and a theoretical critique. Journal of Advanced Nursing, 7(2), 47–56. doi:10.1111/j.1365-2648.1982.tb00222.x
   Web of Science ®Google Scholar
• Lee, R. M., Fielding, N. G., & Blank, G. (2017). Online research methods in the social sciences: An editorial introduction. In N. G. Fielding, R. M. Lee, and G. Blank (Eds.), The Sage handbook of online research methods (2nd ed, pp. 3–16). London: Sage. doi:10.4135/9781473957992
   Google Scholar
• Madill, A., Jordon, A., & Shirley, C. (2000). Objectivity and reliability in qualitative analysis: Realist, contextualist and radical constructionist epistemologies. British Journal of Psychology, 91(1), 1–20. doi:10.1348/000712600161646
   PubMed Web of Science ®Google Scholar
• Moradi, M., Parker, M., Sneddon, A., Lopez, V., & Ellwood, D. (2014). Impact of endometriosis on women’s lives: A qualitative study. BMC Women’s Health, 14, 123. doi:10.1186/1472-6874-14-123
   PubMed Web of Science ®Google Scholar
• National Health Services. (2017). Endometriosis. Retrieved June 4, 2017 from http://www.nhs.uk/Conditions/Endometriosis/Pages/Introduction.aspx#symptoms
   Google Scholar
• Purtell, R., & Gibson, A. (2012). How to make health and social care research radical and really really useful. In C. E. Lloyd & T. Heller (Eds.), Long-term conditions: Challenges in Health and Social Care (pp. 69–80). London: Sage. doi:10.4135/9781446288757.n8
   Google Scholar
• Seear, K. (2009a). The third shift: Health, work and expertise among women with endometriosis. Health Sociology Review, 18(2), 194–206. doi:10.5172/hesr.18.2.194
   Web of Science ®Google Scholar
• Seear, K. (2009b). “Nobody really knows what it is or how to treat it”: Why women with endometriosis do not comply with healthcare advice. Health, Risk and Society, 11(4), 367–385. doi:10.1080/13698570903013649
   Web of Science ®Google Scholar
• Terry, G., & Braun, V. (2017). Qualitative survey methods. In V. Braun, V. Clarke, & D. Gray (Eds.), Collecting qualitative data: A practical guide to textual, media and virtual techniques (pp. 15–44). Cambridge: Cambridge University Press.
   Google Scholar
• Viganò, P., Parazzini, F., Somigliana, E., & Vercellini, P. (2004). Endometriosis: Epidemiology and aetiological factors. Best Practice & Research in Clinical Obstetrics & Gynaecology, 18, 177–200. doi:10.1016/S1521-6934(04)00008-2
   PubMed Web of Science ®Google Scholar
• Whelan, E. (2007). ‘No one agrees except for those of us who have it’: Endometriosis patients as an epistemological community. Sociology of Health and Illness, 29, 957–982. doi:10.1111/j.1467-9566.2007.01024.x
   PubMed Web of Science ®Google Scholar
• Willig, C. (2013). Introducing qualitative research in psychology (3rd ed.). Maidenhead: Open University Press. doi:10.1036/9780335244508
   Google Scholar
• Witry, M. J., LaFever, M., & Gu, X. (2017). A narrative review of medication adherence educational interventions for health professions students. American Journal of Pharmaceutical Education, 81(5), 95. doi:10.5688/ajpe81595
   PubMed Web of Science ®Google Scholar
• Young, K., Fisher, J., & Kirkman, M. (2015). Women’s experiences of endometriosis: A systematic review and synthesis of qualitative research. Journal of Family Planning and Reproductive Health Care, 41(3), 225–234. doi:10.1136/jfprhc-2013-100853
   PubMedGoogle Scholar
• Zarbo, C., Brugnera, A., Frigerio, L., Malandrino, C., Rabboni, M., Bondi, E., & Compare, A. (2018). Behavioral, cognitive, and emotional coping strategies of women with endometriosis: A critical narrative review. Archives of Women’s Mental Health, 21(1), 1–13. doi:10.1007/s00737-017-0779-9
   PubMed Web of Science ®Google Scholar