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Managing Polycystic Ovary Syndrome
What Our Patients Are Telling Us Journal of Holistic Nursing
American Holistic Nurses Association
Volume XX Number X
Joan Crete, DNP, MSN, WHNP-BC March XXXX xx-xx
© 2011 AHNA
Pamela Adamshick, PhD, RN, PMHCNS-BC 10.1177/0898010111398660
Moravian College, Bethlehem, Pennsylvania http://jhn.sagepub.com

Women with polycystic ovary syndrome (PCOS) experience symptoms such as irregular menses, hirsut-
ism, and acne, and are at heightened risk for developing obesity, metabolic syndrome, diabetes mellitus,
infertility, and some cancers. Data also indicate an inverse correlation between PCOS and health-
related quality-of-life indicators and self-image. Purpose: The purpose of this study was to describe the
lived experience of women with PCOS in the management of their disorder and the meaning of that
experience for them. Design: This qualitative study was conducted using a phenomenological approach
based on the guidelines of Van Manen. Method: Individual, semistructured interviews were completed
with 10 participants who were diagnosed with PCOS and managed by a health care practitioner(s)
within the past 5 years. Data were analyzed using the process of hermeneutic phenomenological reflec-
tion. Findings: The four major themes that described women’s lived experience of managing PCOS
were frustration, confusion, searching, and gaining control. Conclusions: Women with PCOS face
many challenges in managing their disorder and desire to gain control, balance, and well-being through
a comprehensive treatment plan. The findings have implications for health care providers in addressing
quality of life issues and overall health outcomes.

Keywords:  women’s health; chronic disease; holistic care; quality of life; advanced nursing practice; women

Background pathophysiology of PCOS is less clear than the mani­
festations. There is agreement that a disruption in the
Polycystic ovary syndrome (PCOS) is the most com- hypothalamic–pituitary–ovarian axis exists, which
mon endocrine disorder in women of reproductive creates a hyperandrogenemia state. This hormonal
age, with an estimated prevalence in the United States imbalance is responsible for the reproductive and
between 10% and 25% depending on the definitions metabolic abnormalities associated with the syndrome
used for diagnosis (Benjamins & Barratt, 2009; Jones, (Futterweit, 2007; Noller & Paulk, 2006; Stankiewicz
Hall, Balen, & Ledger, 2008; Table 1). Women with & Norman, 2006).
PCOS may present with complaints of infertility, Women with PCOS receive care in various set-
menstrual irregularities, hirsutism, acne, alopecia, tings, with their specific symptom(s) and/or age direct-
or obesity (Lifchez & Jasulaitis, 2009; Magnotti & ing them to the expertise of a primary care prac­titioner
Futterweit, 2007; Snyder, 2006). Endocrine abnor- or specialist. Initial management is aimed at addressing
malities include anovulation, hyperandrogenemia,
and insulin resistance and links the condition to
potential chronic diseases associated with metabolic Authors’ Note: Please address correspondence to Pamela
Adamshick, PhD, RN, PMHCNS-BC, Assistant Professor of
syndrome (Futterweit, 2007; Radosh, 2009; Setji, & Nursing, Nursing Department, Moravian College, 1200 Main
Brown, 2007; Stankiewicz & Norman, 2006). The Street, Bethlehem, PA 18018; email: adamshp@moravian.edu.

Downloaded from jhn.sagepub.com at PENNSYLVANIA STATE UNIV on May 12, 2016

Guidelines. No. Month XXXX Table 1. may delay diagnosis and management as suggested by The significance of quality of life issues cannot be Snyder (2006). Coffey. acute problems and then to controlling and/or pre. incorporation of psychosocial support is only 2009. The ACOG perspectives about their care and well-being. and Mason (2006) and Jones et al. 2016 . Inter­ venting chronic complications (Benjamins & Barratt. health care providers need effects of PCOS fall within the psychosocial realm. 2009. The adolescent with a similar to be normal. experience for them. of the variation in presentation (Radosh. Teede. found in the University of Texas guidelines.. estingly. XX.2   Journal of Holistic Nursing / Vol. 2006. American described the meaning of management of this chronic College of Obstetrics and Gynecology (ACOG) guide. & Moran. menstrual irregularity.com at PENNSYLVANIA STATE UNIV on May 12. (2006) phenomenological study described the mean- toms and complaints. most of the troubling chosocial toll of PCOS. inclusion of the psychological features of this condi- Deeks.sagepub. 2005. or obesity deserves ing of being different from other women and wanting a work up of PCOS. Additionally. related quality of life (HRQoL) and other mental health issues are explored. However. syndrome in their lives. Other authors have had similar findings that reflect increased anxiety This qualitative study was conducted to ascertain the and depression as well as decreased sexual satisfac. Gibson-Helm. PCOS management. Considering the with hyperandrogenism. 2010. yet the literature provides few studies that The majority of PCOS articles and resources explore the psychosocial aspects of living with PCOS support the importance of a clinical diagnosis and and coping with psychological distress. medical intervention produce positive effects. The study is important for patient 2006). 2009). providing insight into women’s ings and desired outcomes is consistent. Bulletin 108). found the study participants shared a common feel- hirsutism. The current study addresses line (2009) supports PCOS evaluation in all women this knowledge gap in the literature. Diagnostic Criteria for Polycystic Ovary Syndrome National Institutes of Rotterdam Consensus Androgen Excess Society Signs and Symptoms Health (Two Required) Criteria (Two out of Three) (Hyperandrogenism Plus One Other) Hyperandrogenism × × × Oligoamenorrhea or × × × amenorrhea Polycystic ovaries by × × ultrasound diagnosis Source: The American College of Obstetricians and Gynecologists (2008. X. Bano. and high prevalence and enormous physiologic and psy- polycystic ovaries. Stankiewicz & Norman. This presents a challenge that tion should be an important piece of the management. As sug- Literature suggests PCOS diagnosis is difficult because gested in the recent article by Teede et al. ignored. Radosh. 2006) agree that lifestyle chan­ges and This holistic approach supplements the traditional Downloaded from jhn. & their disorder and to understand the meaning of that Teede. lived experience of women with PCOS in managing tion in this population (Deeks. Himelein & Thatcher. Snyder’s medical management based on the patient’s symp. A pri- 2009 practice bulletin as well as practice guides mary aim of the study is to address the importance written by Stankiewicz and Norman (2006) and the of a holistic approach in the management of women University of Texas nurse practitioners (National with PCOS resulting in an improved quality of life. care in that it adds to the body of knowledge related to Medical management specific to the clinical find. a better understanding of the meaning of PCOS This component of the condition has recently emerged management in patients’ day-to-day functioning and in the literature as the effects of PCOS on health. 2009). (2010). Studies to date have neither examined presentation should raise concerns of PCOS as well women’s experience of managing their PCOS nor (Benjamins & Barratt. (2008) found diminished Purpose HRQoL in women with PCOS. Lifchez and Jasulaitis (2009) ing for women of living with PCOS. Hahn et al. menstrual irregularity. self-image. 2010). The researcher suggest the infertile woman presenting with acne.

and able to speak and that involvement in the study would not influence understand English. Protection of Human Participants The hospital network institutional review board app­ Sample roved the study. draw at any time during the study and understood aged within the past 5 years.5 1 medical model by identifying the psychosocial and symptom relief and/or PCOS management from one emotional components of care for this population. a concept Downloaded from jhn. and seven Caucasian (Table 2). One of the researchers. the and purpose of the study was mailed by the research. a phenom- each participant by phone to explain the study and enological approach was suitable. The personal inter- essence of their experience through the interpreta- views were conducted by the same nurse practitio- tion of their sharing and perceptions allowed insight ner in a private room in the hospital library or office into their experiences (Van Manen. interviews. ers to gynecology offices associated with the hospital network. acknowledging each person’s unique process.com at PENNSYLVANIA STATE UNIV on May 12. two PCOS management with her coresearcher. the wom- tive responses were received. Extracting the arrange a time for the interview. initially contacted experience in the management of PCOS. earchers could be aware of them and the interviewer ment in the study. of Providers  1 50 Caucasian College 12 2  2 32 Native American College 7 1  3 34 Caucasian High school 6 1  4 20 Caucasian High school 5 2  5 25 Caucasian College 7 1  6 33 Latina College 11 6  7 28 Latina High school 3 3  8 35 Caucasian High school 5 1  9 42 Caucasian High school 16 5 10 27 Caucasian college 2. diagnosed with PCOS and man. Managing Polycystic Ovary Syndrome / Crete. discussed her preconceived notions about with ethnic backgrounds of one American Indian. to six different providers. and names were forwarded. Prior to engaging in participant interviews. 2016 . The 10 who comprised en’s health nurse practitioner.  Participants Participant Age (Years) Ethnicity Level of Education Years of Diagnosis No. Method Setting The women were managed by various providers within Study Design a large hospital network in the Mid-Atlantic region of the United States. 1990). convenience sample was generated from written consent was obtained prior to the interview. Participants had sought care for could attempt to hold them in abeyance. The length cess of becoming aware of assumptions was done to of time since diagnosis with PCOS for these women bring these beliefs into the open so that both res­ varied between 2½ to 16 years at the time of enroll. participants were identified by number only. who conducted the the study participants ranged in age from 20 to 50 years. a pool of women who met the inclusion criteria: age The participant was given the opportunity to with- 18 years or older. The study was explained fully and a A purposive. This pro- Latino. this insight recognized commonalities of the group’s exp­ eriences that were organized into themes. In the taped interviews. Although setting. These women Data Collection were invited to participate in the study. Adamshick   3 Table 2. A letter identifying the design her care management. the For the purpose of examining the meaning of women’s women’s health nurse practitioner. Participants were interviewed in the order in which their affirma.sagepub.

The participants were encouraged to share experience. 2016 . examined their highlighted sections to identify inci- ment of PCOS. and auditability were dently highligh­ted particular phrases and sections demonstrated. auditability. Through team discourse. The opening question was framed as fied. The nurse practi. fittingness. 1970).4   Journal of Holistic Nursing / Vol. showing the were identified. Three res­earch earchers maintained an audit trail of the findings. but not neces- bias or assumptions as analytical decisions were made. similar incidental themes were clustered their experiences through a semistructured inter. Credibility. Data saturation was achieved after initial problem identification and the decisions interviews with 10 participants. The res­ diately on completion of each interview. and ideas for essential themes were identi- view process. Fittingness was achieved mana­gement of PCOS and its meaning for them can by the discussion of similarity of the study findings be grasped. 1990. who is not a Manen. women’s health practitioner. that represented “structures of the experience” (Van During data analysis. Transcripts of inter. length and were conducted in one uninterrupted groupings were formed of structures reflecting the meeting. Each team member indepen. and without which the experience of manage- were used to explore topics regarding when and how ment of PCOS symptoms would be incomplete (Van the diagnosis of PCOS was made. the interview with the participant. return of data transcripts and the suggested lection as described by Van Manen (1990) was used themes to the participants for validation. team members (the two authors and a women’s illustrating the identification of structures of the exp­ health nurse practitioner) read through interview erience. and participants’ feelings about the The researchers followed hermeneutic principles overall management of their condition. Auditability was achieved by tion of the emerging themes and no new themes documenting the process of inquiry.sagepub. for women with the disorder emerged through this tions or comments. criteria of credibility. Incidental themes clarified ideas and discussion points to help reduce were descriptive of the phenomenon. Data collection was concurrent with with other literature on women’s symptoms of PCOS data analysis and continued until there was replica. p.com at PENNSYLVANIA STATE UNIV on May 12. The pro- viewer summarized and then verified main points from cess allowed for a perspective of the phenomenon. In were transcribed verbatim by a hospital network tran. recommendations Manen. Downloaded from jhn. and eventual incorporation transcripts several times to allow for reflection on into themes. Month XXXX referred to as bracketing assumptions (Husserl. and confirmabil- ity. by providers. or truthfulness. The experience for the participants. the coresearcher. Confirmability was achieved when the the whole of the data. She often questioned. what Heidegger (1962) calls the circle in under- scriptionist who was paid an hourly rate. X. and their management. provided a balanced the researchers met several times and collectively perspective to any assumptions about the manage. Final themes were determined based on their “What is your experience in terms of diagnosis and quality of being essential to describe the phenome- management of your PCOS?” Open-ended probes non. A second mailing with a complete process. understand and be involved in something. and inclu- to analyze the data. None of the participants refuted the themes demonstrate the rigor of the study. for this study was Data Analysis achieved by individual review by each team mem- The process of hermeneutic phenomenological ref­ ber. sarily unique to the experience of women’s manage- The audio-taped interviews averaged an hour in ment of PCOS symptoms. refuted. 79). standing. the inter. that reveal trustworthiness in a qualitative study are credibility. fittingness. our shared human practices allow us to At the conclusion of each interview. 1990). After this individual process. made for a purposeful exploration of the topic views were sent to the research team members imme­ through a phenomenological method. placing the participants in the context of their envi- tioner who conducted the interview compared the ronment and permitting an understanding of the tapes with the written transcripts for accuracy. The tapes in explanation and interpretation of the themes. Through this reflection the sion of direct quotations from participants in the essential meaning of the lived experience of women’s formal written summary. their clustering. Four criteria as presented to them in the correspondence. together. No. and dental themes of the phenomenon. list of the core themes was sent later in the research Sandelowski’s (1986) framework is applied to process. The meaning of the written transcripts were then returned to the par. experience of achieving management of PCOS ticipants with a letter requesting review for correc. XX.

It was very. because I was get- on interactions with health care providers. very emotional. . They don’t address it because with the management of her treatment. I see no improve- want to go back on the pill. though she had been diag- [PCOS diagnosis] and you can tell by . You know how they call it the “bearded lady syndrome. If I remember what causes it say. he never looked at them [whiskers]. weight control and hirsutism.com at PENNSYLVANIA STATE UNIV on May 12. searching. described the one-dimensional treatment she received: I am still taking the medication and I’m still having the pains . I felt like I was really hor- reflected in a lack of confidence in providers along monal. another participant described that her treat- ment was symptom-based rather than comprehensive The women’s stories of their experience of manage. One area of frustration centered He probably thought I was crazy. One participant also pant’s symptom. explaining to everybody around me why I have this look . Associated with health Participants’ lived experience included frustration care visits was the perception of participants that over lack of symptom improvement. “Yes. She explained one of her visits: of managing PCOS. which included phases of searching this is the problem. they’ll read through my history and they’ll see it Another participant. this is the problem. these pills. They time to ask . . 2016 . Sometimes I don’t feel like weight?” I don’t think he’s interested.” The pain is still there. used to get whiskers and humps on their back and He never asked. health situation. toms was worsened by the participants’ emotional vulnerability as they dealt with an uncertain diagnosis and lack of improvement under prescribed treatments. I was all over with a sense of inattentiveness from them. .” major themes that emerged to describe the women’s lived experience of management of PCOS were frus. which was ting worse at this point. but now since you want to get for answers and attempting to gain control. One par- the place. Her description cap- tures the emotional upheaval of unrelenting symp- The same participant remarked on the health care toms and the ordeal of what the problem is. The pregnant. we’ll just put my life? Even when I have sexual intercourse. Theme 1: Frustration One client felt that she was “going crazy” as health Frustration was a dominant theme of this study. I can’t you on the pill and then you you’ll be regular. “Do you shave them?” He doesn’t big round stomachs. I don’t feel like going through the ordeal of Participants’ frustration was heightened by the what the problem is. how they nosed with PCOS for 12 years. . . . . but I didn’t understand why. of irregular menses. confusion. ticipant described her situation as follows: .” Ladies years ago I think he knows about it but he doesn’t take the used to get it and they didn’t know what it was. even pull through because of the pain. . provider’s inattentiveness to her troublesome symp- toms of weight gain and hirsutism: I still have a body image issue. I suffered from really bad headaches and so I didn’t I’ve been taking them for so long. I was saying. “Here. “This is what sense of confusion. but that always seemed ment except for the acne.sagepub. “How’s your diet going or are you losing any I don’t get as upset. and gaining control. primarily with providers were looking for a “quick fix” for the partici. Adamshick   5 Findings Similarly. then trying to understand their you have. for PCOS: ment of PCOS depicted a process of feeling frustrated about their care management. . . One PCOS client. so to be the quick fix just to regulate my period. including I don’t think they know what to do for it. The experience of frustration in managing symp- tration. lack of symptom improvement. remained frustrated kind of skip over it. listen. with the complaint discussed persistent pain she endured for 11 years. we could do this to fix it.” They just said. So it am I supposed to live with this pain for the rest of was kind of setting the PCOS aside. Managing Polycystic Ovary Syndrome / Crete. All care from two different practitioners did not address participants voiced this as part of their lived experience her emotional swings. along with a prevailing Nobody ever really sat down and said. need to see several health care providers before the diagnosis of PCOS was made. Downloaded from jhn.

was willing to assume blame regarding provided. ent recalled her experience of having an ultrasound of her ovaries: I was scared. so they don’t have a treat- probably would have gone to someone else. One client. including visits to more than one provider and multiple tests. They really don’t talk to me about it. [third doctor] and she told me it was they really don’t know where to go with it. the experience of con- fusion about her diagnosis led to mistrust of provid- Another participant. In a similar vein. XX. . ters that got pregnant fine. Confusion clustered into categories I did wrong. I don’t trust this The stories that I have. I don’t think. so many other women have. Is there something I can do to prevent it earlier than [age] twenty? For another participant. espe- cially prior to the diagnosis. told me . the client. so they didn’t tell me watch of. she was informed mismanagement of PCOS. She noted. No. one for management felt there were several areas of accountability for the of hirsutism and one for pelvic pain. On the other hand. but also continuing dur- I don’t do drugs. treatable. So I started to ask questions . The doctors don’t know much about it. leaving clients with uncertainties. the frustration she exp­ spective that she had assisted the health care provid- erienced with management of her care caused her to ers to finally make her diagnosis. There’s not enough informa- tion. .6   Journal of Holistic Nursing / Vol. some participants who were frustrated with their care management put blame on One participant who suffered with heavy and providers. . but rationales were not time of diagnosis. Yes. I always think to myself I had two sis- of diagnosis and implications of the disease process. or knew what to ask even. and what’s wrong with The experience of confusion about diagnosis was me. doctor anymore because he didn’t tell me I had So that means that there’s not that many doctors polycystic ovaries. One participant expressed distress at not erratic menstrual cycles from age 11 to age 16 was knowing the full implications of PCOS on her over- diagnosed with PCOS at age 16. life. Downloaded from jhn. when I was diagnosed with PCOS. I don’t know what ing treatment. I don’t drink . No one really sat there and told me anything. 2016 . It’s still not recognized enough. one participant shared her per- For another participant. her comments reflect the impact she felt regarding health care providers’ basic knowledge defi- Nobody really managed it [PCOS] at all. I don’t think I really asked the right questions. tried to make sense of the experience: participant described a sense of confusion. . I think what they do is read the research and the research has no If I would have known that something was wrong. After seeing two providers. what can ment plan . . by a third provider that she had PCOS.com at PENNSYLVANIA STATE UNIV on May 12. The partici- pant commented. . However. that yes. I definitive treatment plan. I do? Look at in the earlier stages. this is stopping you from conceiving.sagepub. Though she is now all health. so I started questioning this out there who are paying either enough attention or doctor. They never cit about PCOS. . 18 years old at the cated that tests were done. I think I told them about it. X. can ment plan and I have to figure out my own treat- you do some tests. It’s been frustrating. blame providers for not clearly stating the magni- tude of her condition. is there anything wrong. every punished. never told me that. Month XXXX For some participants. Participants indi- In another instance. age 23. They this is something that is part of your overall health told me when I first started that not much was too just so you know this is something you have to keep well known at that point. ers. . I ask questions and they try to explain and I don’t get anywhere. diagnosed 3 years previously. frustration led to blaming. feeling In their lived experience of PCOS management. Hey. stating. One cli- the frustrating lack of symptom management. what did I do wrong? I really don’t understand. often of long duration. It’s going to cause different issues in your much. Theme 2: Confusion either of the self or the provider. Never.

My mom said we were going to the doctor and In response to their experience of feeling frustrated everything was fine in the end. patients that have the diagnosis. the implications of lved formal searching for answers through use of their diagnosis were often presented in vague or par. you have to sit down A prediagnostic Internet search left one participant and take the time. figure out my options. depending on the stage of PCOS and the related con- cerns at that time. it up online. this type medication. I just wanted a little more information and I really didn’t get it. talking. engaged in searching activities. no one ever said anything. I have some of them it. Common sources tial terms. nosis investigation about symptoms to postdiagnosis I do know the symptoms because that’s the only clarification of information that was initially over- thing that was explained to me. Other participants spoke of searching for more I’ve done all my own research and reading. to understand and address their health circumstances.sagepub. She was throwing conversation with a peer stimulated her to look fur. Another participant’s search to clarify information Searching activities were ongoing for participants. so I looked ther for treatment management. formal and informal. My mother has told me the related management of their PCOS was the topic several times that I need to watch my sugar because of mentioned most often by the participants as a source ending up with diabetes with my next pregnancy. which I didn’t understand. retrospect I do have some of the other symptoms. included WebMD and other Internet sites and books. One participant had this to say. One client who had been diag. but 18 years old and and confused by their care management. online resources or printed materials. and in or different education from the provider. In their lived experience. The usefulness of these mea- tell him [health care provider] is when you have sures in the management of symptoms was variable. but I did not know that that’s what they were until I read up on it. She actually was pregnant and had PCOS and was on metformin. but I didn’t get it. not rush through the visit. encing miscommunication in that regard. a lot of information at me. overwhelmed her to the point of tears. participants you see what the pain means on the Internet. of confusion. Managing Polycystic Ovary Syndrome / Crete. I would Theme 3: Searching of course go on the Internet and I’d find I think I have cancer. 2016 . Similarly. Is it more than just birth con. Participants’ formal searching ranged from prediag- To this day I don’t know what the risk factors are. Participants were clearly bothered by not understanding the possible health risks posed by Several participants spoke of activities that invo­ PCOS. I like to read about it. She and I didn’t realize they were connected until I was really didn’t explain what is going to happen if I take diagnosed. if I take that. the formal search- really interested in it and the types of treatment ing and reading was helpful to pull together the available for PCOS. I cried because of the difficulties of the condition and eventually what could happen with Then I ran into a coworker at work and she and I got my developing diabetes and heart problems. That’s when I started getting In one participant’s experience. participants involved a process of gaining control of Downloaded from jhn. The first thing I would whelming or complex. I do have some dark facial hair. The pain on my ovary made me see the doctor. The hormonal up and a little bit of literature and talking doesn’t really do down mood swings type thing. Adamshick   7 The experience of understanding risk factors and No. She (provider) said it has to do with insulin resis- nosed with PCOS for 4 years found that a casual tance. but experi. I do I just would have been happier if I would have gotten have the weight gain problem. symptom picture that she had noticed in herself and trol pills? verify its relationship to the PCOS diagnosis.com at PENNSYLVANIA STATE UNIV on May 12. with heightened anxiety over her symptoms. another participant spoke of wanting Theme 4: Gaining Control to know about her risk for metabolic syndrome after The lived experience of PCOS management for the her experience of gestational diabetes.

I mean they man- 7 years previously. but not the issue itself. which occurred only recently. because it was an issue with me being heavy. Participants’ ments Synder’s (2006) study findings of women feel- ability to gain control often meant visits to several ing different from other women and the cited common doctors. Over time. themes of searching for answers and gaining control. and weight control. the disease itself and the long-term implications for their health. and eventu. It’s got to be researched because you at some type of self-treatment for symptoms of hir. explained her efforts at taking aged the symptom of not being able to get pregnant control. and searching led them to take con.sagepub. very helpful. confusion. Moving beyond symptom management. It was gain control. She states that she has had perspective of the meaning of that experience in their 40 doctors’ appointments in the past 8 months. This was achieved through self-treatment and self-education. it would correct itself. how to get rid of these round stomachs. No. and gaining Ultimately. control and understanding about PCOS. I thought it was strictly just your Actually I do remember her [nurse practitioner] say. and here I’m much more educated and ber seeing that online. to me a little bit more. the participants’ experience of frustra- tion. can’t go around with 100 pounds extra in your stom- sutism. . I thought it had nothing to ing. who had been diagnosed I don’t think it’s managed at all. meant a comprehensive treatment plan to address This qualitative research provides new information the underlying diagnosis. that stands out because that was upsetting. and continues to see specialists for her erience of their overall care management and their various health problems. women Downloaded from jhn. . I think the weight gain of the metabolic problem is Almost every participant’s experience included attempts so resistant. One partici. unaware. well-being that allowed for a high quality of life. what it was. mation from the provider along with her own res­ earch and self-education to enhance her sense of I would summarize my first experience as naïve. XX. It’s important that they figure out metabolically the first avenue for gaining control. Self-treatment was ach. It was essential to get the that expands on the existing knowledge.8   Journal of Holistic Nursing / Vol. X. quite well. hormones and ovaries. The initial importance for symptoms and overall treatment. pant has been diagnosed with PCOS for the past What the current study adds is the women’s exp­ 12 years. knowledge. It comple- appropriate treatment for the diagnosis. but rarely total management. This is me off somewhere else. she is still struggling to gain control of ally the overall treatment. Despite the fact that this participant found the online information “very successful.” she desired Discussion more education from the provider: The meaning of the experience for women in man- And have them tell me what to look for and what to aging PCOS was getting to a place of balance and expect and this is why. acne. I had a very limited view of I lost weight. Another participant described her ongoing efforts to trol of their PCOS through self-education. if do with anything else. A lot of it was about infertility I think my doctors are aware and they are able to talk . lives.com at PENNSYLVANIA STATE UNIV on May 12. having seen two specialists for PCOS important to participants to gain understanding of treatment. One participant. I’m telling you right now they have attempted to solve the problem before shipping didn’t really inform me about anything much. participants was control of their symptoms. described a satisfactory experience of gaining con- Another participant used a combination of infor. understanding of their health problem. 2016 . However. including symptoms. the experience of gaining control control through a comprehensive treatment plan. Month XXXX PCOS. a lot of questions and I felt like it was just a simple PCOS. trol after visits to two different specialists. the fact that I do not get regular periods and I obviously have a hor- That’s all they told me—that you have a potential monal imbalance. And I do remem. what I found out later on from the Internet. I really think that my OB should for getting diabetes. Thank God for the Internet! One participant. who is 7 years postdiagnosis.

mon exp­eriences revealed in this study. 2005). By accepting patients’ need for control. acute symptoms and that prevent or control chronic ing self-care needs of the client (Berbiglia. which comprises those nation of the diagnosis and associated risks. and pharmacologic interventions as well as websites out life (Pender. The activities performed independently by an individual guidelines further recommend lifestyle management to promote and maintain personal well-being through. Implications and Recommendations In applying Orem’s theory to the role of the nurse. Participants also range. The of support groups and educational sites.. and supports client feelings of accom. diagnostic. and ongoing adaptation in pants reflected a need for transparency concerning self-care (Berbiglia. 2002). the pathophysiology and psychosocial effects can and control. which would Recent discovery correlating the physical symp. Adamshick   9 voiced the need to fully understand the implications nurses and other health care providers encounter. their descriptions captured living equally important in the spectrum of managing with their symptoms over time and the evolving pro. based on the chang. physical. prescriptive. nicity of the disorder or how their current com- plishment about well-being. PCOS. yet the feelings and experiences revealed in voiced the holistic nature of their needs. Treatment goals that address client and may vary sequentially. necessary elements of the Downloaded from jhn. HRQoL questionnaire during the initial work up. Managing Polycystic Ovary Syndrome / Crete. beginning HRQoL as well as the management challenges that with a complete history. In the control phase. the diagnosis of PCOS. The man- ance and well-being in their lives and promote their agement guideline written by the nurse practitioners own health. cess of trying to manage their health problems. & Parsons. Given sibility in managing these cases may be a flow sheet the challenge of living with PCOS and its effects on or protocol listing management steps. such that their stories were similar. 2002). for Further Study nursing’s approach to health intersects with Orem’s theory of self-care. and quality-of-life issues were nature of PCOS. Comments from the partici- developmental change. Hahn et al. 2002). how this disorder affects them and to complete a ship and diagnosing self-care deficits. 2006. phase encourages client learning. and pos- The women in this study represented a wide age sible associated hea­lth risks. Their management incorporates expla- individuals engage in self-care.sagepub.. its management. at the University of Texas (National Guidelines. The findings can be understood in terms of Orem’s 2006) includes a psychosocial history with the nursing theory of self-care. The intervene to improve outcomes and HRQoL issues. This holistic study participants’ experience of management of approach captures the spectrum of needs for the PCOS reflects their priority for self-care as they PCOS patient. health implications. it of their diagnosis and to assert their right to attain is understandable that women would have the com- expert PCOS management in order to achieve bal. enhances interest Many women do not seem to understand the chro- in self-care.. the nurse’s role with the PCOS Providers might consider asking PCOS clients client focuses on establishing a therapeutic relation. In complications may also enhance HRQoL. Murdaugh. searched for answers that would allow them to achieve and maintain personal health and well-being. reg­ practitioners are in a position to distribute educa- ardless of age. tive phase of the nurse–client collaboration achieves Management incorporating the client’s concerns therapeutic self-care methods while the regulatory with an evaluation of associated risks is paramount.com at PENNSYLVANIA STATE UNIV on May 12. nurse’s role in self-care as it relates to management Agreement concerning the complexity of this syn- of PCOS involves application of four cognitive drome and the need for a comprehensive and holis- operations that fulfill phases in Orem’s theory. aged for PCOS identify areas where providers can guiding. tional resources and discuss options. The prescrip. Many of the client and nurse evaluate the client outcomes in terms study participants lacked knowledge of the possible of correct and appropriate regulation of functioning. integrate women’s input with management goals. An understanding of four operations. 2016 . regulatory. are completed collaboratively with the guide the management. toms of PCOS with diminished HRQoL cannot be One possible solution to the over­whelming respon- ignored (Coffey et al. This theory states that assessment. 2002). and supporting (Pender et al. Attesting to the pervasive emotional. the diagnostic phase. The tic approach is the initial step. such that nursing care supports The themes common to women diagnosed and man- health promotion and maintenance by teaching. the plaint fits into the general syndrome.

Health-related pare the effects of PCOS education in control and quality of life in women with polycystic ovary syndrome: experimental groups. of study. doi: 10. Pender. Being and time (J. (2009).). 337-343. (2007). Clinical and tural groups. M. 2006. Obstetrical and Conclusion Gynecological Survey. E. & Thatcher. collaborative analysis in the research team enhances Heidegger. M.com at PENNSYLVANIA STATE UNIV on May 12. Louis. & Teede. No. The high prevalence of this disorder provides GYN and Infertility Nurse. Upper No. (2007). balance. (2006). E..06. NY: Harper. OB/ plan.. K.). G.. M.pop. & Barratt. (2006). Mann. L.010. and Lifchez. 16. Gynecological Endocrinology. Gibson-Helm. and laboratory testing to Benjamins.. L.. included. Janssen. Polycystic ovary syndrome: A experiences clearly informed the study and provided common reproductive and metabolic disorder necessi- the meaning of PCOS management for women with tating early recognition and treatment. . H. Obstetrics & Gynecology. to develop plans of management that incorporate a 91.004.. S.. 14. L.mcna. 20. J. M. women with polycystic ovary syndrome: A systematic 2010). 239-266). 2005. holistic approach reflecting the multilayered needs National Guidelines. The American College of Obstetricians and Gynecologists. School of Nursing. In M. (2006). H. 15-25. (2009). it may not be representative of women in Hahn. Evaluation and education and possible referrals for psychosocial management of polycystic ovary syndrome.). pretreatment and posttreatment studies that com.1016/j. Fertility and Sterility. References Noller D... A. N.. Himelein. M. Noller & Paulk.. Elsenbruch. & Parsons. S. 936. M. Orem’s self-care deficit nursing the- ory in practice. 761-789. 32-34. S. of living with PCOS are well-documented (Hahn (2008). S. Pleger. Alligood & A.. Gynecological Endocrinology: obtaining health care provider feedback relating to The Official Journal of the International Society of the management of women with PCOS.. the process of 853-860. The study findings identify the desire of review. 2016 . Clinical Review. 2421-2423. C. polycystic ovarian syndrome (University of Texas School of Nursing. Journal of concerns. & Paulk.. Polycystic ovary syndrome. K. Other work may use HRQoL A comparison with the general population using the questionnaires before and after interventions to eva­ Polycystic Ovary Syndrome Questionnaire (PCOSQ) and luate the impact. Nursing theory utilization and application (pp. PCOS clients present a challenge to providers New York. & Jasulaitis. identified themes differently. Austin: University of Texas. The study may also be limited by inter. Month XXXX physical examination. Anxiety and depression in polycystic ovary syndrome: A Strengths and Limitations comprehensive investigation. NJ: Prentice Hall. (1970). . Although appropriate for this type . European Journal of Endocrinology. M. Another area of interest would be the Short Form-36 (SF-36). Hall.10   Journal of Holistic Nursing / Vol. New York. psychological correlates of quality-of-life in polycystic pretation in that others reviewing transcripts may have ovary syndrome. J. V. Physical and psychosocial effects Jones. (2006). S. all settings or from different socioeconomic or cul. Magnotti. Family Nurse Practitioner Program). Obesity and the poly- an opportunity for nurses and health care providers cystic ovary syndrome. 23. women with PCOS to gain control. Coffey. X. Macquarrie & the validity of the analysis. Diagnosis and management of of each woman. L. (2010). Schedlowski. & Mason. Primary Care: the disorder. Polycystic ovary syndrome and mental health: A review.1016/j small sample size. Tomey (Eds. Teede et al. Human Reproduction Update.. M. Further research in this area could incorporate St.sagepub. 114. Saddle River. R. A. H. (2005). Trans.. However. 22. . Downloaded from jhn. S. 34. 108). (2002). The primary limitation of this study is the Clinics in Office Practice.. S.2007. & Futterweit. (2002). Findlay. J. A.. 93. Trans. Health-related quality of life measurement in et al. M. NY: Humanities Press. D. doi:10. Balen. 80-86. Educational handouts and information Pediatric Health Care. Robinson. E. W. (2009). W. & Ledger. (1962). 153. G. XX. Polycystic ovary syndrome (ACOG Practice Bulletin Health promotion in nursing practice (4th ed... O. Husserl. A. A. Polycystic ovarian well-being through a comprehensive treatment syndrome: Medical and reproductive implications. D. S. The strength of the study is the participants. A. W. Tan. 1151-1168. Medical Clinics of North America. E. whose Futterweit.. Bano. N. MO: Mosby.2007. about websites and support groups could be Berbiglia. Murdaugh.. S. Logical investigations (J. J.). 61(11): 723-732. J. across disciplines. Deeks.

Polycystic ovary syn. 66. 8. 671-676. (2007). The problem of rigor in qualitative University of New York Press. Drug treatments for polycystic ovary syn. doi: 10. Joan Crete DNP. (2009). J. The lived experience of women diag. & Moran. Luke's Hospital and Health Network in Bethlehem. Moravian College. & Norman.. M. Downloaded from jhn. American Family Physician. M.sagepub. MSN. BMC Medicine. A. research. Albany: State Sandelowski. & Brown. M. leadership. 2016 . Researching lived experience: Human drome. 27-37. 903-912. Snyder. and Neonatal Nursing. 35. reproductive mental health nursing. WHNP-BC is a women's health nurse 120.06. Professor of Nursing at St. Pa. (2010). doi: 10. 385-392. Luke’s School of Nursing at Teede. Gynaecologic. 79. Polycystic ovary syndrome: Diagnosis and treatment. Managing Polycystic Ovary Syndrome / Crete. American Journal of Medicine. Areas of focus as a nurse educator have and metabolic manifestations that impacts on health across included psych/mental health. Setji. aggression and bullying in adolescents. 8. Journal of Obstetric. Advances in Nursing Science. Stankiewicz. (2006). (1990). B. nursing research. Pa and teaches in the graduate nursing department. L.amjmed.. 128-132. Van Manen..1186/1741-7015-8-41. S. PhD. T. practitioner who practices in the Women's Health Center at St. RN. L.com at PENNSYLVANIA STATE UNIV on May 12. Diagnosis and man- agement of polycystic ovary syndrome: A practical guide. Deeks. She also holds a joint appointment with DeSales University in Allentown. (2006). PMHCNS-BC is Assistant Drugs.. H. R. L. nosed with polycystic ovary syndrome.1016/j. Pamela Adamshick. Adamshick   11 Radosh.029. science for an action sensitive pedagogy.2006. and the lifespan. A. (1986). Her area of clinical practice is psychiatric/ drome: A complex condition with psychological.