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Unheard, Misunderstood& Suffering: An Ethnographic Study exploring The experiences of South Asian Women with PCOS living in the UK KholoodTMunir KingsCollegeLondonnt Definitions “South Asian” – women originating from the Indian subcontinent sharing similar genetic and sociocultural traits Polycystic Ovarian Syndrome (pcos) – most common endocrine disorder affecting women of reproductive age • Physical symptoms – acne, excess hair growth • Metabolic symptoms – insulin resistance, overweight/obese • Reproductive symptoms – irregular periods, anovulation, subfertility • Mental symptoms – depression, anxiety, low self esteem Introduction Whyisthistopicimportant andwhatisitsrelevance? - Ethnicminorities Aetiology • the aetiology of PCOS is generally unknown • “individuals with a genetic predisposition and certain environmental and sociocultural factors could lead to the expression of PCOS features” both of which are indeed closely linked to and influenced by ethnicity and culture. Statementof theProblem PCOS is the most common endocrine disorder affecting women of the reproductive age worldwide1In the UK, studies suggest the prevalence of PCOS in South Asian women is very high and that it has significant clinical associations. 2 Evidence suggests PCOS affects South Asian Women more adversely than Caucasian Women. 3 there is very little and understandingg the reasons why Evidence suggests PCOS affects South Asian Women more adversely than Caucasian Women. 3 there is very little and understandingg the reasons why LIVINGWITHA CHRONICCONDITION: The experiences of South Asian Women with PCOS living in the UK perspective of South Asian women living in the UK and the factors that arehe influencing how they live with and manage their PCOS.Overviewofpresentation 01 RESEARCHAIMS 02 METHODOLOGY FINDINGS& LEARNING 03 DISCUSSION 04 POINTS& RECOMENDATIONS Aims&Objectives To explore in depth women’s own perspectives including their contexts, journeys, reasons, ideas, insights and motivations when living with PCOS. Tinto the condition effectively complement the data in the literature that points towards south Asian women having worse PCOS Understanding this can help caregivers appreciate patients’ sociocultural contexts + barriers they are facing and thus can enable caregivers to give appropriate and suitable support to them and improve care + health outcomes. DataCollection A focused qualitative ethnographAsian women with PCOS living in the UK.ured interviews of four South • Recruitment through electronic outreach ie social media, text, participant referrals and word of mouth. • Purposive sampling was undertaken to ensure participants met the criteria of being a South Asian woman with a clinical diagnosis of PCOS and currently living in the UK. • Participation was voluntary and informed written consent was obtained from all participants. • The interviews were conducted and automatedly transcribed on Microsoft Teams. • Interviews explored participant experiences living with PCOS, including their lives before and after diagnosis, their experiences accessing healthcare and medical support for their PCOS and their experiences of managing the condition on a day-to-day basis. DataAnalysis Once all interviews were completed, the transcripts were analysed using axial coding. First, they organised into further categories (about 30) and then 3 themes to work with.they were then Data was stored, managed, classified and ordered using the Taguette software, (an open-source text tagging tool for qualitative data analysis and qualitative research), as well as Microsoft Excel. 03 RESEARCHFINDINGS RESEARCHFINDINGS Theme1: Theme2: Theme3: Impactof Lackof Positive sociocultural Medical behaviours ideologies Support andpracticesTheme1:Impactofsocioculturalideologies1/2 Lackofawareness,understanding&education ofPCOSandinfactwomen’shealthingeneral A participant when discussing her attitudes towards seeking help for her PCOS mentioned, “ I didn’t for a long time… as it was shameful for young girls to be seeking help for married women problems”. - Inaccurate information – assumption that PCOS only affects “married women”, and that its is something to be “ashamed” of - Vague terminology – use of “married women” to mean sexually active, demonstrative of taboo, stigma, shame - Deep rooted beliefs - women’s health = reproductive health, overlooking the whole gynaecological branch of medicine What is the lesson learnt? Important findings, evokes the question how many women in the community are experiencing distressing symptoms but are not seeking help. Next Steps: Further research. Public health initiatives and programmes to raise awareness in community Theme1:Impactofsocioculturalideologies2/2 Societalexpectationsandpressuresrelatedto theroleofwomenandfutureprospectsas wifeandmother,thereforelivingin embarrassment,shameandinsecrecy When discussing societal expectations and pressures participants described “feeling alone”, “worthless”, “insecure”, "freakish", "lesser", “embarrassed”, “low self- confidence” and “low esteem”. - Impact on life trajectory, lack of support, social media influence vs no endometriosis on life trajectory of patients.ic endometriosis What is the lesson learnt? The massive psychological toll on patients Next Steps: Better treatment, emotional counselling, further research, public health initiatives to raise awareness especially family and community, creation of a social media regulatory body Theme2:lackofmedicalsupport Poorexperienceswithseekinghelp A participant when discussing her experience seeking help from the GP said“ Every time I went, they just didn’t listen or understand what its like [deep rooted dietary cultural practices] – they’d tell me to lose weight… to just give up carbs… as if I wasn’t trying or I was to blame. It would make the situation worse for me, I would stop eating and felt like I was starving myself…. and so I just stopped going [to the GP]”. - Lack of empathy– not listening, “blaming” patient - Lack of awareness/ cultural competency – not addressing cultural contexts - Advice poorly delivered – restrictive eating behaviours What is the lesson learnt? Current model of care for PCOS patients is not working. Importance of cultural competency in ethnically diverse medical climate. Next Steps: Better training, better treatments through further research, a PCOS dedicated outpatients clinic in secondary care, more GPs with special interest in women’s health Theme3:Positivebehaviours&practices Positiveimpactoffamilysupport,educationalprogrammes involvingfamily,organisedsportsandclubs, onlineplatforms A participant said“ I remember before I found my partner and got married, it was so bad, I was like a disappointment for my family, my parents – they didn’t know or understand much and I guess they just assumed the worst… But I was so lucky, afterwards, because you know my inlaws were so supportive as my husband’s cousins also have it [PCOS] and they know about it and its not a big deal… I remember how everything changed… I was happier and more confident”. - The difference between having and not having family support - Positive impact of good support network – potential impact on patients if extrapolated to whole community What is the lesson learnt? Support is important. Support works. Next Steps: Better training, implementation of educational programmes involving family and public health initiatives to raise awareness in community. 04 Learningpoints& recommendations Keylearningpoints 1. Important findings, topic never been addressed before in medical literature, these findings have paved the way to further research in this area. 2. South Asian women are struggling, their sociocultural contexts play a big role. 3. Lack of awareness and understanding evokes the question of how many women in the community are experiencing distressing symptoms but are not seeking help 4. The massive psychological toll on patients – shame, embarrassment, secrecy 5. Importance of cultural competency amongst healthcare professionals in new global and ethnically diverse medical climate 6. Support is important. Support works.Nextsteps& RecommendationsforNHSEnglandand RoyalCollegeofObstetrics&GyneacologyUK 1. Better treatment 2. Better training 3. Further research into ethnography and experiences of other ethnic groups 4. a PCOS dedicated outpatients clinic in secondary care 5. more GPs with special interest in women’s health 6. Implementation of emotional counselling for these patients 7. Organised sports, diet and educational programmes or schemes for PCOS patients 8. Implementation of educational programmes involving family and community 9. Public health initiatives and programmes to raise awareness in community 10. Formation of a social media regulatory body regulating medical information online References 1. Hart R, Hickey M, Franks S: Definitions, prevalence and symptoms of Polycystic ovaries and Polycystic ovary syndrome. Best Pract Res Clin Obstet Gynaecol 2004, 18: 671–683. 10.1016/j.bpobgyn.2004.05.001 2. Clinical endocrinology, 49(1), pp.91-99. K. and Nussey S.S. 1998. Polycystic ovaries and associated metabolic abnormalities in Indian subcontinent Asian women. 3. Mehta J. Kamdar V. and Dumesic D. 2013. 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Nutrients 14(1) p.73. 13. World Geographical Regions, United Nations Statistics Division, accessed at (https://unstats.un.org/unsd/methodology/m49/) Unheard, Misunderstood& Suffering: An Ethnographic Study exploring The experiences of South Asian Women with PCOS living in the UK