Specific Aims:
1) to identify the physiological and psychosocial experiences of women diagnosed with PCOS, and
2) to identify the diagnostic and treatment experiences of these women.
Significance: PCOS is the most common chronic endocrine disorder and leading cause of infertility in women of reproductive age, with a prevalence ranging 6-21% (Blagojevic, et al., 2017; Brakta, et al., 2017; Conte, Banting, Teede, & Stepko, 2014). PCOS has significant clinical consequences, including cardiovascular, metabolic, and psychological morbidities due to the risk factors of obesity, impaired glucose tolerance, insulin resistance, and dyslipidemia (Legro, et al., 2013). Research findings indicate that women with PCOS have eight times the incidence of depression as compared to healthy controls (Cinar, et al., 2011). PCOS is associated with significant fiscal costs for individuals/families and health care systems. In 2014, the total cost of evaluating and treating reproductive-aged women with PCOS in the United States was over $5 billion (Bahar, 2015).
Methods: Guided by a theoretical lens of the social construction of illness, this study is using a qualitative descriptive design to analyze stories posted on a social support website for women diagnosed with PCOS. The sample consists of 95 randomly selected stories from a total of 379 posted stories. Using low inference content analysis, three researchers independently analyzed the first seven stories. They then met to collaboratively review the stories, and using the iterative process of comparison analysis, reached a consensus on a coding scheme. Using the coding scheme, each researcher is independently reviewing one-third of the remaining stories. They will then meet to collaboratively review their coding of each of the 95 stories. Common themes, representing meaningful thoughts from the stories, will be identified. A codebook will be created to illustrate the process of data reduction using open (line by line) coding and axial coding (identifying relationships in line by line coding). Themes that define the relationships in collected data will then be identified.
Results: The social construction of illness posits that some medical conditions are embedded in cultural meaning and socially constructed at the experiential level and that medical knowledge is also socially constructed in a way that reflects inequalities of gender, class, race, and ethnicity. Preliminary results revealed themes within the framework constructs of the Social Construction of Illness (Conrad and Barker, 2010). The three constructs of this framework are the cultural meanings of illness, the illness experience as socially constructed, and medical knowledge as socially constructed.
The identified themes within each construct are as follows:
I. Cultural meanings of illness—femininity, stigmatized illness, and contested or definitive diagnosis. II. Illness experience—biopsychosocial sequalae, medication side effects, medical treatment challenges and successes, need for affiliation, and coping strategies. III. Medical knowledge—physician-patient relationship, patient roles and physician expectations, and role expectations of the female gender.
Conclusion: The cultural meanings of illness describes two premises: 1) illness has both a biological and an experiential component, and that these components exist independently of each other and 2) social or cultural meanings are assigned to certain illnesses. Conrad and Barker (2010) further state that certain illnesses are stigmatized, some are definitive while others contested, and some are considered disabilities while others are not; and, finally, that distinctions exist for social reasons, not biological reasons. For example, preliminary analysis revealed that women with PCOS feel victim to stereotyping based on the cultural expectations of femininity. Their perceptions appear to originate from both internal and external loci of control, as several writers cited both self and social expectations of the feminine role.
The illness experience as socially constructed is based on the phenomenological premise that reality exists in multiple forms and is determined by the percipient. The social construction of illness, a trait typically thought to be immutable and solely biological, is actually the product of definition and interpretation shaped by cultural and historical contexts (Conrad & Barker, 2010). The illness experience is that which the woman with PCOS lives, including the biological sequalae (hirsutism, balding, central adiposity, and acne) and the medical experiences of prolonged diagnosis and/or treatment. Shandra shared, “Diagnosed 2 weeks ago … it definitely explains nearly all of my struggles over the years. I thought it was all in my head!”
Medical knowledge is socially constructed in that it both reflects and encourages gender inequalities. Culture and history affect the formation, sustainment, and future change of medical knowledge, thus producing a cultural bias. For example, female hysteria was once a medical diagnosis to describe what is now known as normal functioning of female sexuality (Tasca, Rapetti, Carta & Faddi, 2012). In addition, traditional Western medicine dichotomizes body and mind and uses reductionism to exclude social, psychological, and behavioral facets of illness. Preliminary analysis of website stories as shared on an online social website for women diagnosed with PCOS revealed strain on the patient-physician relationship. Feeling disregarded, patients expressed a dissatisfaction with physicians’ perceived lack of concern. One writer, identified as Alice, stated, “The doctors where I live don’t care about the problems I face with this condition, it’s a physical and mental struggle on a daily basis.”
These women experienced biopsychosocial challenges that created a sense of isolation and frustration with self and medical care. Common sentiments were found in quotes such as, “I can’t even look in the mirror without wanting to cry,” “I have no one to talk to,” and “the doctors don’t care the problems I face with this.” In addition, PCOS is difficult to diagnose due to differing diagnostic criteria and the variable phenotypes, and the treatments are not straightforward.
Implications: Provider education about PCOS is necessary to accurately diagnose, describe the disease process, and implement individualized treatment strategies. Thus, providers require education about the diagnosis, symptomology, and potential treatments of PCOS.
Narrative medicine, that is, patient-centered healthcare whereby the physician acknowledges, interprets, and acts on the stories and plights of the patient, could be considered (Charon, 2001). This model of practice could better bridge the divide between physician and patient and physician and society.
Solutions need to be multifactorial and multi-level. A multidisciplinary team is necessary to ameliorate biopsychosocial issues. Medical knowledge should accommodate health and illness as meaningful phenomena that transcends underlying biological pathology. Preemptive provider counseling, physician advice intended to deter or prevent an unwanted potential occurrence, would facilitate a dialogue, empowering the woman toward self-management.
Support groups provide connection and shared information. More research is needed to identify additional social supports and interventions for developing self-esteem and coping strategies and reducing stigma-related stress.
The findings have policy implications, which include insurance, government funding, and access to care. PCOS can affect life insurance, depending on the severity and treatment. Since the discovery of PCOS in 1935, conclusive causes and treatment remain elusive and government funding for research limited. Currently, PCOS receives less than 0.01% of national funding (Brakta, et al., 2017). Even with adequate financial resources, the appropriate medical specialist and specific treatments might not be available in certain geographic areas.