Dismissal, distrust, and dismay: A phenomenological exploration of young women’s diagnostic experiences with endometriosis and subsequent support

Abbott, KV, Barton, FB, Terhorst, L, et al. (2016) Retrospective studies: A fresh look. American Journal of Speech-Language Pathology 25: 157–163.
Google Scholar | Crossref | Medline Alase, A (2017) The interpretative phenomenological analysis (IPA): A guide to a good qualitative research approach. International Journal of Education and Literacy Studies 5: 9–19.
Google Scholar | Crossref Armour, M, Sinclair, J, Chalmers, KJ, et al. (2019) Self-management strategies amongst Australian women with endometriosis: A national online survey. BMC Complementary and Alternative Medicine 19(1): 17.
Google Scholar | Crossref | Medline Ashton, S (2014) Researcher or nurse? Difficulties of undertaking semi-structured interviews on sensitive topics. Nurse Researcher 22(1): 27–31.
Google Scholar | Crossref | Medline Ballard, K, Lowton, K, Wright, J (2006) What’s the delay? A qualitative study of women’s experiences of reaching a diagnosis of endometriosis. Fertility and Sterility 86: 1296–1301.
Google Scholar | Crossref | Medline | ISI Biddle, L, Cooper, J, Owen-Smith, A, et al. (2013) Qualitative interviewing with vulnerable populations: Individuals’ experiences of participating in suicide and self-harm based research. Journal of Affective Disorders 145: 356–362.
Google Scholar | Crossref | Medline | ISI Biggerstaff, D, Thompson, AR (2008) Interpretative phenomenological analysis (IPA): A qualitative methodology of choice in healthcare research. Qualitative Research in Psychology 5: 214–224.
Google Scholar | Crossref Bitzer, J (2011) Psychosomatic aspects of endometriosis. Journal of Endometriosis 3: 166–170.
Google Scholar | SAGE Journals Brosens, I, Gordts, S, Benagiano, G (2013) Endometriosis in adolescents is a hidden, progressive and severe disease that deserves attention, not just compassion. Human Reproduction 28: 2026–2031.
Google Scholar | Crossref | Medline | ISI Cartwright, T, Fraser, E, Edmunds, S, et al. (2015) Journeys of adjustment: The experiences of adolescents living with juvenile idiopathic arthritis. Child Care Health and Development 41(5): 734–743.
Google Scholar | Crossref | Medline Chan, A, Poon, E, Goh, WL, et al. (2018) Assessment of psychological distress among Asian adolescents and young adults (AYA) cancer patients using the distress thermometer: A prospective, longitudinal study. Supportive Care in Cancer 26(9): 3257–3266.
Google Scholar | Crossref | Medline Cho, E, Park, ES (2017) Adaptation experience and social support network of adolescent cancer survivors. Child Health Nursing Research 23(2): 238–248.
Google Scholar | Crossref Colarossi, LG, Eccles, JS (2003) Differential effects of support providers on adolescents’ mental health. Social Work Research 27(1): 19–30.
Google Scholar | Crossref | ISI Cole, JM, Grogan, S, Turley, E (2021) “The most lonely condition I can imagine”: Psychosocial impacts of endometriosis on women’s identity. Feminism & Psychology 31(2): 171–191.
Google Scholar | SAGE Journals | ISI Coxon, L, Horne, AW, Vincent, K (2018) Pathophysiology of endometriosis-associated pain: A review of pelvic and central nervous system mechanisms. Best Practice & Research Clinical Obstetrics & Gynaecology 51: 53–67.
Google Scholar | Crossref | Medline Culley, L, Law, C, Hudson, N, et al. (2013) The social and psychological impact of endometriosis on women’s lives: A critical narrative review. Human Reproduction Update 19: 625–639.
Google Scholar | Crossref | Medline | ISI Dancet, EA, Apers, S, Kremer, JA, et al. (2014) The patient-centeredness of endometriosis care and targets for improvement: A systematic review. Gynecologic and Obstetric Investigation 78: 69–80.
Google Scholar | Crossref | Medline De Graaff, AA, D'Hooghe, TM, Dunselman, GA, et al. (2013) The significant effect of endometriosis on physical, mental and social wellbeing: Results from an international cross-sectional survey. Human Reproduction 28: 2677–2685.
Google Scholar | Crossref | Medline | ISI Dowlut-McElroy, T, Strickland, JL (2017) Endometriosis in adolescents. Current Opinion in Obstetrics & Gynecology 29: 306–309.
Google Scholar | Crossref | Medline Dunselman, GA, Vermeulen, N, Becker, C, et al. (2014) ESHRE guideline: Management of women with endometriosis. Human Reproduction 29: 400–412.
Google Scholar | Crossref | Medline | ISI Endometriosis UK (2011) Diagnosis survey. Available at: www.endometriosis-uk.org/sites/endometriosis-uk.org/files/files/Endometriosis%20Diagnosis%20Survey%20Feb2011%20Report%20final.pdf (accessed 10 December 2019).
Google Scholar European Society of Human Reproduction and Embryology (2013) Guideline on the management of women with endometriosis. Available at: https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-guideline-on-endometriosis-2013.pdf?la=en&hash=5569958D4FD2A867960430611C84686029E4B75C (accessed 1 February 2019).
Google Scholar Facchin, F, Barbara, G, Dridi, D, et al. (2017) Mental health in women with endometriosis: Searching for predictors of psychological distress. Human Reproduction 32: 1855–1861.
Google Scholar | Crossref | Medline Facchin, F, Barbara, G, Saita, E, et al. (2015) Impact of endometriosis on quality of life and mental health: Pelvic pain makes the difference. Journal of Psychosomatic Obstetrics and Gynaecology 36: 135–141.
Google Scholar | Crossref | Medline | ISI Facchin, F, Saita, E, Barbara, G, et al. (2018) “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: 538–549.
Google Scholar | SAGE Journals | ISI Fuldeore, MJ, Soliman, AM (2017) Prevalence and symptomatic burden of diagnosed endometriosis in the United States: National estimates from a cross-sectional survey of 59,411 women. Gynecologic and Obstetric Investigation 82: 453–461.
Google Scholar | Crossref | Medline Galletta, A (2013) Mastering the Semi-Structured Interview and Beyond: From Research Design to Analysis and Publication. New York, NY: NYU Press.
Google Scholar | Crossref Ghai, V, Jan, H, Shakir, F, et al. (2020) Diagnostic delay for superficial and deep endometriosis in the United Kingdom. Journal of Obstetrics and Gynaecology: The Journal of the Institute of Obstetrics and Gynaecology 40: 83–89.
Google Scholar | Crossref | Medline Gill, P, Stewart, K, Treasure, E, et al. (2008) Methods of data collection in qualitative research: Interviews and focus groups. British Dental Journal 204: 291–295.
Google Scholar | Crossref | Medline | ISI Giudice, LC (2010) Endometriosis. New England Journal of Medicine 362: 2389–2398.
Google Scholar | Crossref | Medline | ISI Grant, A (2014) Troubling ‘lived experience’: A post-structural critique of mental health nursing qualitative research assumptions. Journal of Psychiatric and Mental Health Nursing 21: 544–549.
Google Scholar | Crossref | Medline Grogan, S, Turley, E, Cole, J (2018) ‘So many women suffer in silence’: A thematic analysis of women’s written accounts of coping with endometriosis. Psychology and Health 33: 1364–1378.
Google Scholar | Crossref | Medline Gupta, J, Cardoso, LF, Harris, CS, et al. (2018) How do adolescent girls and boys perceive symptoms suggestive of endometriosis among their peers? Findings from focus group discussions in New York city. BMJ Open 8(6): e020657.
Google Scholar | Crossref | Medline Hansen, KE, Kesmodel, US, Baldursson, EB, et al. (2013) The influence of endometriosis-related symptoms on work life and work ability: A study of Danish endometriosis patients in employment. European Journal of Obstetrics, Gynecology, and Reproductive Biology 169: 331–339.
Google Scholar | Crossref | Medline Hsu, AL, Khachikyan, I, Stratton, P (2010) Invasive and non-invasive methods for the diagnosis of endometriosis. Clinical Obstetrics and Gynecology 53: 413–419.
Google Scholar | Crossref | Medline Hudson, N, Culley, L, Law, C, et al. (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.
Google Scholar | Crossref | Medline | ISI Hu, X, Bell, RA, Kravitz, RL, et al. (2012) The prepared patient: Information seeking of online support group members before their medical appointments. Journal of Health Communication 17: 960–978.
Google Scholar | Crossref | Medline Jamshed, S (2014) Qualitative research method-interviewing and observation. Journal of Basic and Clinical Pharmacy 5: 87–88.
Google Scholar | Crossref | Medline Janghorban, R, Latifnejad Roudsari, R, Taghipour, A (2014) Skype interviewing: The new generation of online synchronous interview in qualitative research. International Journal of Qualitative Studies on Health and Well-Being 9: 24152.
Google Scholar | Crossref | Medline Janssen, EB, Rijkers, AC, Hoppenbrouwers, K, et al. (2013) Prevalence of endometriosis diagnosed by laparoscopy in adolescents with dysmenorrhea or chronic pelvic pain: A systematic review. Human Reproduction Update 19(5): 570–582.
Google Scholar | Crossref | Medline | ISI Johnston, JL, Reid, H, Hunter, D (2015) Diagnosing endometriosis in primary care: Clinical update. British Journal of General Practice 65: 101–102.
Google Scholar | Crossref | Medline Kia-Keating, M, Dowdy, E, Morgan, ML, et al. (2011) Protecting and promoting: An integrative conceptual model for healthy development of adolescents. Journal of Adolescent Health 48(3): 220–228.
Google Scholar | Crossref | Medline | ISI Kroger, J, Martinussen, M, Marcia, JE (2010) Identity status change during adolescence and young adulthood: A meta-analysis. Journal of Adolescence 33: 683–698.
Google Scholar | Crossref | Medline | ISI Laufer, MR, Sanfilippo, J, Rose, G (2003) Adolescent endometriosis: Diagnosis and treatment approaches. Journal of Pediatric and Adolescent Gynecology 16: S3–S11.
Google Scholar | Crossref | Medline Lee, S, Yamazaki, M, Harris, DR, et al. (2015) Social support and human immunodeficiency virus-status disclosure to friends and family: Implications for human immunodeficiency virus-positive youth. Journal of Adolescent Health 57(1): 73–80.
Google Scholar | Crossref | Medline Lerner, RM, Steinberg, L (2009) Handbook of Adolescent Psychology, Volume 1: Individual Bases of Adolescent Development. Hoboken, NJ: John Wiley & Sons.
Google Scholar | Crossref Le Roux, A, McCall, J, Pudwell, J, et al. (2021) Therapeutic journey of adolescents with severe dysmenorrhea. Journal of Obstetrics and Gynaecology Canada 43(5): 666.
Google Scholar | Crossref Lewinsohn, PM, Rohde, P, Gau, JM (2003) Comparability of self-report checklist and interview data in the assessment of stressful life events in young adults. Psychological Reports 93(2): 459–471.
Google Scholar | SAGE Journals | ISI Low, J (2013) Unstructured and semi-structured interviews in health research. Researching Health: Qualitative, Quantitative and Mixed Methods 2: 87–105.
Google Scholar Marschall, H, Hansen, KE, Forman, A, et al. (2021) Storying endometriosis: Examining relationships between narrative identity, mental health, and pain. Journal of Research in Personality 91: 104062.

留言 (0)

沒有登入
gif