Me Recupere Gracias a Dios” [“I Got Better Thanks to God”]: Personal Stories of Living with Polycystic Ovary Syndrome Among Spanish-Speaking Youtube Users

Theoretical Background and research questions/hypothesis:             The National Institutes of Health (NIH), Office of Disease Prevention, has described PCOS as a major public health problem for women in the U.S. PCOS is characterized by a range of symptoms including irregular or no menstrual periods, hirsutism (excess hair growth on the face and body), weight gain, acne, ovarian cysts, and alopecia (male-patterned baldness).  PCOS increases women’s risk of type 2 diabetes, cardiovascular disease, infertility, anxiety and depression, and poor health-related quality of life.  The NIH has recommended establishing multidisciplinary programs that increase public and health care provider awareness of women with the syndrome.  The needs and experiences of Spanish-speaking women with PCOS are the least understood because most of the research on PCOS has been with English-speaking women.  This study aims to understand the personal stories of Spanish-speaking women living with PCOS in the context of YouTube.  YouTube was selected because it is the world’s largest video-sharing site, and people increasingly post homemade videos of their personal experiences of health and illness on YouTube. 

Methods:             A YouTube search was conducted using the keywords “polycystic ovary syndrome,” “PCOS”, “my story,” “my journey,” “my experience,” “my life,” and “living with” in Spanish.  YouTube videos with combinations of these keywords in the title were included in the study.  This approach yielded nineteen videos.  Video transcripts were retrieved using the transcript feature in YouTube and checked for accuracy by two native Spanish speakers.  A content analysis of the transcripts was conducted.  A preliminary codebook containing characteristics of personal stories of health and illness and themes from the literature on PCOS was developed and used to code the transcripts, while allowing new themes to emerge from the data.  Peer debriefings were held to discuss coders’ interpretations of the data and reconcile differences. 

Results:

Spanish-speaking women with PCOS share their religious beliefs, particularly their praise of God for good health.  These women also share the influence their family members and romantic partners have on their health seeking behavior and in providing social support.  Low-socioeconomic status as a barrier to affordable, quality health care was concerning to women. 

Conclusions:             YouTube is a valuable source for researchers to understand health communication about PCOS in Spanish on social media.  This study sheds light on sociodeterminants of health among women with PCOS in the context of YouTube. 

Implications for research and/or practice:

            This research has implications for developing a social media campaign to increase awareness and health literacy of PCOS among Spanish-speakers on YouTube.  Due to their potential to engage viewers, personal stories have been incorporated into national education and awareness campaigns.  For instance, the Centers for Disease Control and Prevention’s gynecological cancer campaign uses personal survivor stories from women across the country to increase awareness and knowledge of gynecological cancers.