I’ve Got a Secret: Nondisclosure in Persons Who Undergo Bariatric Surgery

by Douglas Sutton, EdD, ARNP, ANP-C; Natalie Murphy, BSN, RN; and Deborah A. Raines, PhD, RN, ANEF

Douglas Sutton, EdD, ARNP, ANP-C is Assistant Professor; Natalie Murphy, BSN, RN, is a PhD Student and Research Assistant; and Deborah A. Raines, PhD, RN, ANEF is Professor, all from Florida Atlantic University, Boca Raton, Florida.

INTRODUCTION

A rapidly growing area of bariatrics is surgicalintervention to reduce body weight in morbidly obese individuals. Surgical weight loss intervention (SWLI) is a highly effective treatment for the morbidly obese population and is becoming increasingly popular. The use of SWLI is expanding exponentially to meet the global epidemic of morbid obesity.[1] The National Institutes of Health consensus statement reports a 600-percent increase in thenumber of weight loss operations between 1993 and 2003.1 Obesity experts estimate that patients undergoing gastric bypass and gastric banding will soon exceed 175,000 each year.[2] These types of surgical procedures have been shown to markedly lower body weight and reverse or minimize the severity of several associated comorbidities.

Clinically severe or morbid obesity is associated with an increased risk of morbidity and mortality from many physical and emotional conditions. From a clinical perspective, most healthcare providers are well versed in the knowledge that conditions such as coronary artery disease, diabetes mellitus, dyslipidemia, and certain types of cancers are more prevalent in this population. However, the profound influence that severe obesity has on the individual and their identity as a member of society is less well understood. The purpose of this research was to explore, using qualitative research methods, the experience of 14 women who underwent WLS and their decision-making processes. This article explores one major theme that was identified; that being “secrecy” or purposeful nondisclosure.

LITERATURE REVIEW
Secrecy or nondisclosure has been reported in the healthcare literature among persons who are members of socially stigmatized groups. Robinson and McGrail report that the most common reason persons fail to fully disclose health information is due to a concern about receiving a negative response from others.[3] This behavior is typically learned at an early age and may serve as a coping mechanism in overweight and obese children. It is well established that the majority of adults who choose to undergo a WLS report being overweight or obese as children and adolescents. Therefore, each diet failure or weight regain may negatively reinforce both the individual and societal stereotype and contribute to a personal desire to conceal past failures. This form of learned secrecy has been shown to have a more profound impact on adolescents, particularly adolescent females. Keijsers and colleagues reported that secrecy and nondisclosure are most damaging in early adolescence and found that younger adolescents who hid information from others tended to internalize problems and to have less self-concept clarity which leads to poor individualization.[4] With the majority of WLS procedures being performed on adult females, this observation may serve as a link between behaviors learned early in life and those observed later in adulthood.

In a 2008 iVillage online poll, 2,825 respondents were asked if they had ever dieted in secret, and the results revealed that 65 percent, or 1,846 people, indicated they had.[5] These persons stated that they did so to avoid being sabotaged or judged. Stigmatizing obesity has been considered the last safe prejudice in our society. The belief that weight is controllable results in strong confidence that obese individuals simply lack motivation or responsibility for a condition that is under their control. Each time that an overweight or obese person attempts to lose weight and fails may reinforce to that person and to others the perception of a lack of self control.

Obesity is associated with significant social consequences. Emerging evidence suggests that even as worldwide obesity rates increase, so too does the stigma related to body weight.[6] Few studies have addressed the psychosocial attributes of the participant’s decision to undergo SWLI. Qualitative research provides a unique opportunity to learn about the participants’ experience and to illuminate the meaning of their experience expressed in their own words.

RESEARCH QUESTION
This paper describes the phenomenon of “secrecy,” also referred to as “failure to disclose,” that emerged from data collected from the experiences of women who underwent bariatric surgery. These findings are part of a larger study of women’s experiences after undergoing WLS.

STUDY DESIGN AND METHODS
A qualitative approach was used to explore women’s choice to undergo WLS. The goal of the research was to determine meaning in the individual experiences and choices of the participants. In this respect, the research approach was consistent with a phenomenological method of investigation.

The study proposal was approved by the university’s institutional review board (IRB). Following completion of the informed consent procedures, a research assistant contacted the participants to schedule the interviews. The interviews were conducted by phone and audiotaped with the participants’ knowledge and assent. The same research assistant conducted all interviews to increase the consistency in the interview format and process.

Using purposeful sampling, individuals who had undergone WLS were invited to participate in an interview about their experience. A semi-structured interview was conducted. The interview consisted of open-ended questions to allow participants to fully explain the thoughts and decisions leading to their surgeries. This article describes the findings related to secrecy, meaning the lack of disclosure or limited disclosure that these participants reported as it relates to their decision to undergo WLS. Data were collected and analyzed over a five-month period in 2008.

Data collection and preliminary analysis was done concurrently, allowing identification of coding, validation of the emerging codes with participants, and gathering of additional information for verification, relevance, and saturation. Data was considered saturated by the creation of dense, logical categories, with no new data emerging. These criteria were achieved after 11 participants shared their experiences. No new data emerged in the last three interviews; therefore, data gathering was terminated.

The research assistant/ interviewer was a registered nurse currently enrolled in a doctoral program. The research assistant has no experience with bariatric patients; therefore, the potential introduction of bias in the data collection process was minimized. The interviewer’s use of field notes during the interview enhanced the reproducibility of the data. The audiotaped interviews were converted to text transcripts by a paid transcriptionist. As each transcript was ready, the researchers read the transcript and compared it to the audio file for accuracy and to minimize transcription errors.

The transcripts were analyzed for common themes as appropriate for phenomenological inquiry.[7] Words, statements, and paragraphs were extracted to communicate the participants’ sharing of the decision to seek WLS. Themes were exemplified by quotes that provide a rich description of the meaning. Initially, each member of the research team analyzed the data using a common organizing structure. Then the team came together to share and discuss the individual analysis, to identify common findings, and to verify the meaning of the data. This process enhanced the trustworthiness and reproducibility of the findings and verified that the themes identified reflected the participants’ experiences and captured the meanings. An audit trail was established through the field notes maintained by the interviewer during the interviews and by notations of all the researchers during the transcription, coding, and organizing of the data in the analysis process.

RESULTS
The sample included individuals who had undergone WLS and volunteered to participate. Snowball sampling was used to identify potential subjects who would consent to being interviewed for this study. The sample consisted of 14 females, all of whom had completed high school and had taken college level course work or had graduated from college with a baccalaureate degree or higher. Nine of the participants (64%) described themselves as healthcare professionals. Subjects ranged in age from 28 to 63 years. The highest reported weight prior to surgery was 412 pounds, and the lowest was 247 pounds. Amount of weight lost ranged from a high of 167 pounds to a low of 72 pounds.

As the data collection evolved, the phenomena of secrecy emerged as a constant and commonly shared experience. The decision to not disclose or to limit disclosure regarding the decision to pursue WLS was a consistent theme heard across the interviews. Each of the participants had a long history of weight management issues and had used a variety of diet programs in the past in an attempt to lose weight, but had been consistently unsuccessful. These participants also shared negative encounters with family members, coworkers, and others related to their weight and their struggles to lose weight. The three following themes were identified that illuminated the common attribute of secrecy surrounding the participants’ decisions to pursue WLS: “the lonely decision,” “looking for approval,” and “not telling.”

The Lonely Decision
For the participants, the initial introduction to a bariatric surgical program was through an acquaintance, a complete stranger, or a marketing item, such as an advertisement or brochure. These participants did not independently initiate the search for a bariatric procedure, nor was the idea of surgery introduced by their primary healthcare providers. However, once introduced to the possibility of WLS, all of the participants engaged in the process of learning about it. The participants described visiting the surgeon, attending presurgical information sessions, and doing research on the internet, while also exploring personal financial options related to covering the costs associated with the procedure. Frequently participants reported that the entire fact-finding mission leading to the decision to undergo WLS was completed in secrecy or under limited disclosure to others. This self-imposed isolation was partially the result of comments made by family and friends regarding weight loss surgery. Participants recalled statements such as the following: “My family didn’t want me to do it (the surgery);” “People said I was taking the easy way out;” and “Someone told me it was unfair, like I was not taking real responsibility for how or why I was overweight.”

After having attended the information sessions, meeting the surgeon, and doing their own research, all participants expressed a level of comfort having been informed about surgical interventions to achieve weight loss. One participant shared, “I did my homework and knew what I wanted to do and I didn’t want people who were uneducated to try and scare me.” Another participant echoed the need to make her own decision: “I wanted the surgery and I did not want to be talked out of it.”

Looking For Approval
If the participant chose to share his or her exploration of bariatric surgery, it was usually with an individual who had previously undergone WLS. This individual served as an encouraging role model and advocate for the procedure, one who could offer authentic information regarding his or her own WLS experience. Participants acknowledged the impact of these individuals with statements such as the following: “A night nurse (work colleague) came to me very privately and said, ‘I had it done, my husband and I had it done, and it was just a great experience;” and “I learned about the surgery from a patient. He said it was the best thing he ever did. After we talked, he gave me the name of his surgeon, and that was the beginning of my decision.”

One participant reported going to a presentation about bariatric surgery offered by a physician. Although she found his presentation helpful, she reports that her ultimate decision was based on the physician’s personal disclosure of having had bariatric surgery himself. She stated, “At the end of his presentation, he showed a picture of himself as an obese man. So he could talk to us from a doctor’s perspective as well as a from a patient’s perspective and I just became sold on it (the surgery).”

Not Telling
Once the decision to have surgery had been made, many of the participants continued to keep their surgical decision secret even as the surgical event approached. “I only told my best friend, my husband, and my children who were sworn to secrecy” and “I didn’t tell people…I went out of town to have the surgery,” were characteristic responses. Participants described going away for their surgeries so they could keep their secret in the following way: “ …It was like this little compound, where you had the surgery. Then you lived in an apartment away from your family and everyone for several weeks.”

As the decision to not tell was explored, the issue of being labeled a failure and the stigma related to their inability to lose weight emerged. One woman stated, “I had so much hope going in but fear as well, so I didn’t want to tell too many people. I thought this is going to be one more thing that I fail at as far as my weight goes.” Another participant reported failing to disclose her decision even after the surgery was performed. She said, “I do not wear it on my sleeve that I’ve had it (the surgery) because I think once you do, people scrutinize you and they are waiting for you to fail.”

Other commonly voiced reasons for not telling were, “I didn’t want people to scare me” and “I didn’t want to hear that I could die.” Clearly these participants recognized that others would voice reactions to their decision, and made the following comments: “People have strong reactions and I didn’t want to hear it” and “I didn’t want to have to explain or defend myself—I was doing it.”

However, limited disclosure or secrecy might also have an unfortunate outcome—a self-imposed limitation in the development of a strong social support mechanism. Participant statements related to this observation were reported as, for example, “I did not tell my parents, sister who is a doctor, or anybody. That limited my support, but I was willing to do that.” One participant stated, “I’ve talked to people whose families were dead set against them having (bariatric) surgery, and they therefore went in (to surgery) alone, without any kind of support.”

DISCUSSION AND CONCLUSION
The emotional burdens that confront obese persons are confounded by a societal stigma related to obesity. Fabricator and Wadden[8] report that obesity stigma is a socially acceptable form of prejudice that frequently leads to depression, isolation, and poor self esteem. As a result of this stigma, obese persons report they have experienced discriminatory behaviors in multiple aspects of their personal and professional lives that have negatively affected their attitudes and beliefs in themselves. This internalization of the societal weight stigma may have contributed to the individual decision to maintain some degree of secrecy or limited disclosure among participants in this study.

Bariatric surgery requires lifestyle changes, which occur most satisfactorily when the individual reports an environment of support from significant others. The secrecy behavior that emerged from the interviews is one of particular concern to individuals involved in both pre- and postoperative teaching and counseling of the person who is planning to undergo WLS. What may ultimately be at stake for the person who has chosen to limit disclosure is a weakened support network that may have implications on achieving positive postoperative outcomes.

Persons who are never informed by the individual who chooses to undergo WLS cannot logically be expected to serve in a support role. However, an interesting finding from these interviews is that many of the negative comments, either stated or anticipated, were attributed to those closest to the obese individual. One would expect family members and close friends to be supportive and sympathetic, but that was not the lived experience of many of these participants. Instead, many reported feeling further stigmatized by the lack of support from their family and friends. It is unclear and beyond the scope of this research to understand the meaning and origin of hurtful comments. In fact, the remarks may be a desperate attempt on the part of family and friends to protect the participants from yet another failed try at weight loss. Another explanation may be that family members feel a shared responsibility for the participant’s obesity and they do not want the additional responsibility of any possible negative outcome from WLS.

The findings of this research, that participants perceived negative responses from others and felt a need to hide their decision to have WLS, are consistent with the findings of stigmatization and discrimination found by Rogge, Greenwald, and Golden.[9] From a social construction perspective, obesity is a problem about losing weight, yet when these participants chose a surgical intervention to lose weight, their choice was still perceived as socially unacceptable or “the easy way out.” As a result, individuals felt the need to be secretive in their choice to undergo WLS even while acknowledging that the secrecy limited their access to support systems that are considered critical in achieving postoperative success. The loss of preexisting support systems (family and friends) heightens the importance that healthcare professionals evaluate the preoperative commitment from the individual to attend postperative support group sessions. This intervention may help the person establish trusting social support mechanisms.

LIMITATIONS AND FUTURE RESEARCH
The primary limitation of this research is the lack of diversity among participants; all participants were well educated females. However, this profile, while resulting in a highly homogeneous sample, is typical of the majority profile of WLS population.

Areas of future research are needed to investigate the intimate role that interpersonal relationships may have on obese persons and their families, particularly when comparing the experiences of obese persons who choose to undergo WLS versus those who do not. Exploring the meaning and significance of obesity in the individual’s childhood and within the family structure and dynamics, as well as the parent-child/adult relationship, would be enlightening. Perhaps such examination could shed further light on the meaning of secrecy behavior as described in this study.

Another area in need of research is the role of family support or lack of support in the postoperative recovery period and its potential impact on the long-term success of persons who undergo WLS. As the number of persons who undergo bariatric surgery continues to grow, additional research focused on the person’s ability to form or properly utilize support mechanisms and the potential impact on long-term outcomes related to bariatric surgery is warranted. Alternatively, outcomes-related research regarding the formal participation of individuals in postoperative support groups, composed exclusively of other postoperative bariatric patients, would also fill a gap in knowledge. Ultimately, understanding the individual’s relationships with significant others and the availability of adequate support systems is important to all healthcare providers who are caring for these individuals. Otherwise, secrecy and stigma may continue to create barriers in the achievement of success in persons who undergo bariatric surgery.

Acknowledgment
The authors would like to acknowledge the support of the National Association of Bariatric Nurses (NABN) and the Iota Xi Chapter of Sigma Theta Tau for their financial support for this research.

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Category: Original Research, Past Articles