Building an Inclusive, Resiliency-based Framework to Support People with Polycystic Ovary Syndrome Across the Lifespan
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Researcher bios and how their research backgrounds relate to this study
Dr. Soucie (she/her) is an Assistant Professor of Psychology in the Child Clinical track at the University of Windsor. Her research interests lie at the intersection of Clinical Psychology and Health Psychology. She is interested in understanding the psychosocial and institutional determinants of chronic health conditions (e.g., diagnosis experiences, misdiagnoses/errors, illness disclosures, social support, and illness stigma) within women's health. Her focus is on PCOS, the most common, yet misdiagnosed endocrine syndrome in individuals assigned female at birth, but she is also interested in IBD, HS, POTS, and endometriosis, and their impact on quality of life. Dr. Soucie also explores how chronic health conditions impact a person's identity/life story, body image, and relationships with others, across the lifespan. She focuses on aspects of strength, resilience, and healing, and building community in her work, with her most recent set of studies exploring "thriving with PCOS across the lifespan". Her second area of interest lies in understanding how youth contribute to their communities during the transition to adulthood--with foci on youth generativity, prosocial engagement, and environmental justice. Dr. Soucie integrates quantitative (SEM, HLM) and qualitative (life narrative/autobiography, interviews, arts-based methods) approaches to better understand these domains of study.
Purpose of this research project
Polycystic Ovary Syndrome (PCOS) is the most common endocrine syndrome for individuals with ovaries, with a global prevalence of up to 21%, affecting an estimated 1.4 million Canadians. Symptoms cluster into reproductive impacts (menstrual irregularities, impaired ovulation, high testosterone), metabolic symptoms (insulin resistance, obesity), and psychological distress (depression, poor body image, poor quality of life). Despite its psychosocial impacts, the majority of PCOS-related research has been conducted within a biomedical framework originating out of gynecology, which ignores the broader lived experience of individuals with this syndrome over the life course. The overarching goal of this project is to address this substantial knowledge gap by centering the lived experiences of people with PCOS from a lifespan developmental biopsychosocial framework. Establishing this line of research is a crucial step toward reshaping both policy and public discourse on PCOS that recognizes the complex and multifaceted ways in which PCOS influences individuals’ lives.
PCOS is generally framed in a way that upholds a regressive view of femininity (e.g., PCOS is framed as “a thief to womanhood” with women viewed as “unfeminine” and “manly”). These cultural messages often become internalized and shape a negative sense of identity. Despite the enduring and harmful impact of these cultural messages, there is very little systematic research, conducted with feminist and resiliency-based lenses, on how people with PCOS resist these dominant discourses, and create a counternarrative for themselves. It is clear that the focus of PCOS is situated within a deficit framework, ignoring solution-focused, resiliency-based supports and recommendations from people with PCOS themselves. This project will intentionally challenge this negative framing by highlighting themes that promote alternative narratives of resistance, resilience, healing, and femininity via the collection of life stories from 70 people of varying social identities and locations. We will capture the evolution of the syndrome across various life stages (adolescence, emerging adulthood), and within specific domains (work, school, health care, relationships, etc.). We will center meaning-making, and integrative life themes across these life periods and contexts. The results of this project will forge a new avenue of research that aligns research questions with an experiential, participant-centric perspective in opposition to a medical perspective that is traditionally male-centric.
This project has direct relevance for patients, researchers, stakeholders, and policymakers in the social sciences, and in health-related fields, particularly in terms of health equity, resilience, and advocacy. Notably, it allows for the development of inclusive, participant-centered, theoretical and methodological frameworks which can inform research, policy, community, and advocacy efforts. Our methodology, and critical feminist framework and arts informed knowledge translation avenues, will advance a novel research agenda of equity and inclusivity. Despite its prevalence, PCOS is largely invisible in Canada, and there are few informational supports from healthcare providers. As a result, many people with PCOS feel alienated from the medical community, struggle to advocate for themselves in health care, family, peer, and work settings, and are left feeling socially isolated.
How this research will help LGBT2SQ people and communities
PCOS is largely framed as a "woman's" health condition and much of the current literature focuses on the cisgender female perspective of PCOS. Although these members are important to listen to and consider, PCOS is a syndrome that can affect ALL people with ovaries, regardless of gender identity. Furthermore, additional demographic factors, such as sexuality, race, and class status, are also overrepresented within the current literature (e.g., most of the literature on PCOS comes from a cisgender female, white, heterosexual, and middle class perspective). We want to ensure that we are recruiting and providing space for all people with PCOS, regardless of their demographic factors, to share their experience with PCOS in order to consider various avenues and resources that may be beneficial for them as well.
Please see answer to previous question.
In appreciation of time and participation, we will provide a $50 e-gift card to a place of the participant's choosing.
Physical risks are not present. There will be no bodily contact or administration of substances, given the online nature of the study.
Psychological/emotional risks are rated as medium. Participants will be reminded at the beginning of the study that participation is confidential and voluntary, and that they can withdraw their participation and data at any point for any reason without penalty. They also have up to 3 weeks to withdraw their data entirely, if they regret participating in the study. They may choose to refuse to answer a given question in the interview and/or demographic survey. It is possible that participants may experience temporary psychological discomfort in response to discussing experiences. We expect, based on prior experience with similar protocols and event elicitations conducted by Dr. Soucie (and within the context of PCOS), that interview questions may lead to mild psychological discomfort. Prior to scheduling the interview, all participants will be given a list of mental health resources available in the community, and educational information about PCOS, which we have found in past studies that participants prefer. They will also be given contact information for the principal investigator (Soucie) should they have any concerns about the interview protocol. It is anticipated that completion of this narrative interview may be of some benefit to participants as it may allow them to explore and process their experiences living with PCOS (including what healing and recovery looks like for them, how they build community, etc).
There are no economic risks as there is no monetary involvement in the study.
The risk of social harm is low, as the information given by participants will be kept confidential. All data from the audio and video recordings will be stored in the Microsoft Teams secure platform, and the only person with access to these recordings will be the primary investigator and research assistants. After the interview is complete, Microsoft Teams automatically generates a preliminary transcript within 24-hours. The assigned interviewer will download the transcript on a secure server. An upper year undergraduate student will double-check the transcript for accuracy against the recordings, and then permanently delete the video file from the Team’s platform . Any identifying information on the transcriptions (names of family, friends, health care providers, etc.) will be removed by the undergraduate student, who will sign a confidentiality agreement. Moreover, participant quotations appearing in publications or presentations will not be identified. It is possible that dual roles may exist. To mitigate the potential of these dual-roles, we will clearly list all of our names on the flyers, so potential participants can decide not to participate if they are concerned about perceived dual roles or conflicts of interest. Additionally, if a participant does mention a dual-role conflict of interest, that participant will be assigned to a different interviewer if they prefer.
In terms of data security, interview recordings and participants’ personal information to characterize the sample as a whole (e.g., age, ethnicity, length of time to diagnosis) will be stored separately from de- identified interview transcripts. All data will be kept in password-protected one-drive shared folder to which only the research team will have access to. All access to the data will be through the Global Protect VPN for added security. Once transcribed, all audio files will be permanently deleted from the computer on which they were stored.
The risk of harm from deception is not present as deception will not be used in the proposed research.
Promoting the Study
Researchers at the University of Windsor in Ontario, Canada, want to learn about your journey with Polycystic Ovary Syndrome (PCOS) across your lifespan. How has your PCOS changed across different stages of your life? How have you coped with shifting symptoms? How do you typically talk about PCOS with others? How do you navigate health care spaces? What does your future with PCOS look like? How have you met and overcome challenges in your life, and learned more about yourself and others along the way? Your participation in this study will add to an emerging area of research that focuses on building resilience and healing in folks currently living with and managing PCOS.
PCOS can affect all people with ovaries, not only women. All people with PCOS are welcome to participate. The study is an interview study which can be conducted virtually (via Microsoft Teams) or in-person (at a quiet research space at the University of Windsor). The interview is a one-on-one interview (1.5-2 hours), followed by a brief 30-minute survey.
In appreciation of your time and participation, we provide a $50 e-gift card to a place of your choosing.
Please scan the QR CODE on the flyer to sign up to participate or click on this link to fill out a brief survey to express your interest in participating: https://uwindsor.ca1.qualtrics.com/jfe/form/SV_dgqxtjuRCN1z7OC. If you have any questions, feel free to email us at email@example.com