Cultural Experiences, Patterns, and Practices of American Indian Women With Polycystic Ovary Syndrome: An Ethnonursing Study

Carron, R; Kooienga, Sarah; Gilman-Kehrer, Esther; Alvero, Ruben

doi:10.1177/1043659619856670

Cited by 7 publications

(11 citation statements)

References 27 publications

(54 reference statements)

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“…Raising awareness in the general community could facilitate a reduction in the current stigma around PCOS [ 62 ]. Participants rarely found themselves being open about their symptoms, described feeling a sense of stigma within themselves and in those around them, especially around the “unfeminine” or “undesirable” aspects of PCOS, similarly to participants in other studies [ 26 , 29 , 62 , 63 ]. Some participants recalled seeing ill-informed and/or stigmatizing comments made about PCOS and similar conditions online.…”

Section: Discussionmentioning

confidence: 67%

What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

Ismayilova

Yaya

2022

BMC Women's Health

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Background Polycystic ovary syndrome (PCOS) is a common and perplexing condition affecting metabolic, reproductive, cardiovascular, and psychological health in women. Previous studies point to widespread dissatisfaction and frustration in women with the information and care they receive. Studies have found delays with the diagnosis of PCOS and gaps in knowledge in physicians regarding the diagnosis and management of PCOS. Little has been heard from women on what they think can be improved with PCOS care, especially in Canada. This qualitative study explores women’s experiences navigating the healthcare system and their insights on what could be improved based on their lived experiences. Methods Twenty-five participants were interviewed remotely over the phone by the first author between October and December 2018.Interviews were semi-structured and in-depth. Data were analyzed using thematic analysis and interpretive description methodology. Results Twenty-five in-depth interviews conducted with participants across Canada (ages 18–63) revealed three overall areas in need of improvement. First, women emphasized a need for greater knowledge and awareness of PCOS in primary care physicians (PCPs) as well as the need for the medical community to prioritize women’s health. Second, participants advocated for greater PCOS awareness and de-stigmatization in the general community and in women and girls, and any individuals with female reproductive systems. Third, participants brought up several needed resources, such as the need for more PCOS research to be funded and undertaken, more PCOS specialists and experts to be available, credible doctor-provided information (e.g., pamphlets, websites), and age-specific support groups and mental health supports to be available. Participants were generally unaware of existing PCOS organizations and brought up the need for established PCOS organizations to aid in the training and retraining of doctors and local awareness-building in communities. Conclusions Participants believed that PCPs in Canada needed to be well-versed on how to diagnose and manage PCOS to prevent delays in diagnosis and provide easier access to care. Further, greater awareness and de-stigmatization in the general community are needed so women can identify symptoms early and have access to support from those around them. Overall, PCOS may be an overlooked and under-prioritized condition, both in the Canadian healthcare system and general community.

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Section: Discussionmentioning

confidence: 67%

What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

Ismayilova

Yaya

2022

BMC Women's Health

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“…Costs and access to services were highlighted as significant barriers to some especially for those living in countries where healthcare is not free at the point of delivery. Differing health care models mean services such as IVF are difficult to access in countries such as India and the USA, as they are usually not funded by the government and expensive to self-fund (20,48). Besides pragmatic reasons, sociocultural attitudes towards PCOS in some communities deter those with PCOS from engaging in management plans.…”

Section: Barriers To Managementmentioning

confidence: 99%

“…Besides pragmatic reasons, sociocultural attitudes towards PCOS in some communities deter those with PCOS from engaging in management plans. Carron et al (20) discussed "fatalistic beliefs" associated with a diagnosis of PCOS in Native American communities. This cultivated a culture of self-blame and lack of hope, preventing women from seeking help from healthcare professionals (58, 59).…”

Section: Barriers To Managementmentioning

confidence: 99%

“…Studies reported the need for culturally specific education and treatment, not only for those with PCOS, but also their family and friends who may be unfamiliar with PCOS. It was stated for example, that educational outreach programs to produce tribal specific information would help to reduce marginalisation and stigmatisation of women with PCOS within tribes (20).…”

Section: Pcos Resources and Improving Outcomesmentioning

confidence: 99%

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A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources

Lau

Elghobashy²,

Thanki³

et al. 2022

Front. Endocrinol.

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IntroductionPCOS-related literature is mostly dominated by the medical perspective. However, the condition’s lifelong, far reaching, and multifaceted impacts highlight the importance to gain the perspectives from those with PCOS. Therefore, we performed a systematic review to explore the current literatures and gaps around the experiences and perceptions of those living with PCOSMethodA comprehensive search of seven electronic databases was conducted between July and October 2021. A total 34 from 1615 screened articles were included in this systematic review and subsequently coded using NVivo 12 software. The quality of individual studies was assessed by adaptation to the Critical Appraisal Skills Program (CASP) quality assessment tool.ResultsFive domains were generated from the data: Signs/Symptoms, Diagnosis, Management, Perceptions, Resources and Improving Outcomes. Dissatisfaction surrounding the experience of diagnosis was common. Concerns surrounded perceived lack of knowledge from healthcare professionals and delays in diagnosis. Individual studies on adults and adolescents shared similar feelings. The consensus was found to be that current management was vague and generalised. Symptoms such as hirsutism, obesity, irregular menstruation challenge personal and societal expectations of femininity. Online PCOS resources are popular amongst those with PCOS but most of them lack evidence. A call for more culturally specific resources was found to be common ground amongst those with PCOS.ConclusionOverall dissatisfaction amongst adults and adolescents regarding their diagnostic journey of PCOS. Tailored and culturally specific PCOS advice and management is necessary and can be achieved through co-creation of resources between healthcare professionals and those with PCOS.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/, identifier CRD42021272371.

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“…Interviewees further expressed a loss of feminine identity and status within the tribe, where fertility and procreation are greatly valued. 38 This sense of inadequacy was enhanced by the lack of access to fertility services in the rural contexts of tribal life. Medical care additionally was frequently not sought due to tribal culture of fatalistic acceptance in the setting of little or no PCOS awareness within the community.…”

Section: Resultsmentioning

confidence: 99%

Bridging the Information Gap in Polycystic Ovary Syndrome: A Narrative Review with Systematic Approach

Tay,

Williams,

Mousa

et al. 2023

Semin Reprod Med

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Polycystic ovary syndrome (PCOS) is a complex endocrinopathy with wide-ranging implications for affected individuals. Literature has shown that patients with PCOS are dissatisfied with the health information provided to them and that healthcare professionals lack adequate knowledge. In this narrative review with systematic approach, we explored the unmet information needs in PCOS care for both patients and healthcare professionals. A comprehensive search of databases yielded 41 relevant studies, predominantly of observational and qualitative design. Adults and adolescents with PCOS desire wide ranging health information and express a keen desire for weight management guidance. Importantly, discussions surrounding weight should be addressed knowledgeably and without weight bias. Therefore, healthcare professionals should facilitate access to comprehensive evidence-based resources. Lack of information drives PCOS-related online searches. Referral to support groups that promote individual agency in the self-management aspects of PCOS can furthermore guide patient resource acquisition. Patients prefer guidance from professionals that understand the psychosocial complexity of PCOS and can empathize with experiences of stigmatization or even marginalization depending on the cultural context of the individual. The findings informed the 2023 International Evidence-Based PCOS Guideline, recommending patient-centered communication, evidence-based information resources, and culturally sensitive approaches to optimize PCOS care.

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Cultural Experiences, Patterns, and Practices of American Indian Women With Polycystic Ovary Syndrome: An Ethnonursing Study

Cited by 7 publications

References 27 publications

What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

What can be done to improve polycystic ovary syndrome (PCOS) healthcare? Insights from semi-structured interviews with women in Canada

A systematic review of lived experiences of people with polycystic ovary syndrome highlights the need for holistic care and co-creation of educational resources

Bridging the Information Gap in Polycystic Ovary Syndrome: A Narrative Review with Systematic Approach

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