Understanding hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders in the context of childbearing: An international qualitative study

Arrese, 2006, Intrahepatic cholestasis of pregnancy: a past and present riddle, Annals of hepatology, 5, 202, 10.1016/S1665-2681(19)32012-5 Beighton, 1988, International nosology of heritable disorders of connective tissue, Berlin, 1986, American Journal of Medical Genetics Part A, 29, 581, 10.1002/ajmg.1320290316 Beighton, 1997, Ehlers-Danlos syndromes: Revised nosology Villefranche, 1997. Ehlers-Danlos National Foundation (USA) and Ehlers-Danlos Support Group (UK), American Journal Of Human GeneticsAnonymous, A49 Braun, 2006, Using thematic analysis in psychology, Qualitative Research in Psychology, 3, 77, 10.1191/1478088706qp063oa Bell, 2016, The birth experience and women's postnatal depression: A systematic review, Midwifery, 39, 112, 10.1016/j.midw.2016.04.014 Cook, 2012, The impact of choice and control on women's childbirth experiences, The Journal of Perinatal Education, 21, 158, 10.1891/1058-1243.21.3.158 Castori, 2014, Nosology and inheritance pattern (s) of joint hypermobility syndrome and Ehlers‐Danlos syndrome, hypermobility type: A study of intrafamilial and interfamilial variability in 23 Italian pedigrees, American Journal of Medical Genetics Part A, 164, 3010, 10.1002/ajmg.a.36805 Castori, 2012, Gynecologic and obstetric implications of the joint hypermobility syndrome (aka Ehlers–Danlos syndrome hypermobility type) in 82 Italian patients, American Journal of Medical Genetics Part A, 158, 2176, 10.1002/ajmg.a.35506 Castori, 2017, A framework for the classification of joint hypermobility and related conditions, American Journal of Medical Genetics Part C: Seminars in Medical GeneticsAnonymous, 148, 10.1002/ajmg.c.31539 Chadwick, 2014, Narratives of distress about birth in South African public maternity settings: A qualitative study, Midwifery, 30, 862, 10.1016/j.midw.2013.12.014 Clarke, 2014, Thematic analysis, 1947 Creswell, 2017 De Baets, 2017, The influence of Ehlers-Danlos syndrome–hypermobility type, on motherhood: A phenomenological, hermeneutical study, Res Dev Disabil, 60, 135, 10.1016/j.ridd.2016.11.017 Demmler, 2019, Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison, BMJ Open, 10.1136/bmjopen-2019-031365 2009 Grahame, 2008, Hypermobility: an important but often neglected area within rheumatology, Nature Reviews Rheumatology, 4, 522, 10.1038/ncprheum0907 Grahame, 2000, The revised (Brighton 1998) criteria for the diagnosis of benign joint hypermobility syndrome (BJHS), J Rheumatol, 27, 1777 Hakim, 2005, Local anaesthetic failure in joint hypermobility syndrome, J R Soc Med, 98, 84, 10.1177/014107680509800222 He, 2016 Hodnett, 2002, Pain and women's satisfaction with the experience of childbirth: a systematic review, American Journal of Obstetrics and Gynecology, 186, S160, 10.1016/S0002-9378(02)70189-0 Hurst, 2014, Obstetric and gynecologic challenges in women with Ehlers-Danlos syndrome, Obstet Gynecol, 123, 506, 10.1097/AOG.0000000000000123 Karthikeyan, 2018, Hypermobile Ehlers–Danlos syndrome and pregnancy, Obstetric medicine, 11, 104, 10.1177/1753495X18754577 Lammert, 2000, Intrahepatic cholestasis of pregnancy: molecular pathogenesis, diagnosis and management, J Hepatol, 33, 1012, 10.1016/S0168-8278(00)80139-7 Malfait, 2017, The 2017 international classification of the Ehlers–Danlos syndromes, American Journal of Medical Genetics Part C: Seminars in Medical GeneticsAnonymous, 8, 10.1002/ajmg.c.31552 Mulvey, 2013, Modest Association of Joint Hypermobility With Disabling and Limiting Musculoskeletal Pain: Results From a Large‐Scale General Population–Based Survey, Arthritis care & research, 65, 1325, 10.1002/acr.21979 NHS England. 2019. Domain 2: Enhancing quality of life for people with long-term conditions. accessed viahttps://digital.nhs.uk/data-and-information/areas-of-interest/hospital-care/quality-accounts/domain-2-enhancing-quality-of-life-for-people-with-long-term-conditions (accessed 2019). O'Brien, 2014, Standards for reporting qualitative research: a synthesis of recommendations, Acad Med, 89, 1245, 10.1097/ACM.0000000000000388 Overcash, 2003, Narrative research: a review of methodology and relevance to clinical practice, Crit Rev Oncol Hematol, 48, 179, 10.1016/j.critrevonc.2003.04.006 Pearce, 2014, The development of synchronous text-based instant messaging as an online interviewing tool, International Journal of Social Research Methodology, 17, 677, 10.1080/13645579.2013.827819 Pezaro, 2018, Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond, British Journal of Midwifery, 26, 217, 10.12968/bjom.2018.26.4.217 Polkinghorne, 1995, Narrative configuration in qualitative analysis, International journal of qualitative studies in education, 8, 5, 10.1080/0951839950080103 Riessman, 2008 Shukla, N., Wilson, E. and Boddy, J. (2014). Combining thematic and narrative analysis of qualitative interviews to understand children's spatialities in Andhra Pradesh, India: 30. [NOVELLA Working Paper: Narrative Research in Action] https://www.gov.uk/dfid-research-outputs/combining-thematic-and-narrative-analysis-of-qualitative-interviews-to-understand-children-s-spatialities-in-andhra-pradesh-india (accessed 2019). Stuckey, 2013, Three types of interviews: Qualitative research methods in social health, Journal of Social Health and Diabetes, 1, 56, 10.4103/2321-0656.109828 Suzuki, 2015, Clinical significance of precipitous labor, J Clin Med Res, 7, 150, 10.14740/jocmr2058w Terry, 2015, Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care, Family Practice, 32, 354, 10.1093/fampra/cmv026 Tinkle, 2017, Hypermobile Ehlers–Danlos syndrome (aka Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history, American Journal of Medical Genetics Part C: Seminars in Medical GeneticsAnonymous, 48, 10.1002/ajmg.c.31538 United Nations. World Population Prospects2019, https://population.un.org/wpp/DataSources/ (accessed 2019). Williams, 2019, “Nobody knows, or seems to know how rheumatology and breastfeeding works”: Women's experiences of breastfeeding whilst managing a long-term limiting condition – A qualitative visual methods study, Midwifery, 78, 91, 10.1016/j.midw.2019.08.002 Wolcott, 1994 World Health Organization. 2018a. WHO recommendations: intrapartum care for a positive childbirth experience. World Health Organization. 2018b. Global strategy for women's, children's and adolescents' health (2016-2030).