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Running head: BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE Breast Reconstruction: Effects on Body Image Following Surgery Laura Grace Anglin East Carolina University 1 BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 2 Acknowledgements I would like to thank all of East Carolina University’s Doctor of Nursing Practice and Family Nurse Practitioner program faculty. Every bit of education and counseling I received during the program assisted with my successful completion. I would like to thank Dr. Mary Pate, Dr. Carol King, and Dr. Marshburn for the guidance they provided me with during the process of completing this project. I would also like to thank Jason Conrad from East Carolina University’s office of Institutional Review Board for relieving me during the most stressful times while obtaining IRB approval. I would like to thank my family and friends for encouraging me and never abandoning me. Even though it may seem I have been absent more often than present over the past three years, you have always been on my mind. I would especially like to thank my parents. Your continuous support carried me through this program. Lastly, I would like to thank Dr. Pamela Reis. Dr. Reis gave me encouragement when it was most needed. She gave me sound advice when I felt lost. She devoted countless hours to this work and provided me with constructive feedback. I would not have made it to this point without her contributions and I will forever be indebted to her for all of the help she has given me during my doctoral studies. Thank you. Grace Anglin BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE East Carolina University College of Nursing Doctor of Nursing Practice Final Project Approval Student Name: Laura Grace Anglin___________________________________ Project Title: _Breast Reconstruction: Effects on Body Image Following Surgery Private Review Completed on ___April 18, 2017__________________________ Public Presentation Completed on _April 13, 2017_________________________ Final Project/Final Paper Approval: As the Chair of this student’s Doctor of Nursing Practice Project Committee, I have reviewed and approved this student’s project and final paper and agree that he/she has met the project expectations, including the DNP Essentials, and has completed the project. DNP Committee Chair Signature: 4/18/2017 3 BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 4 Abstract Women undergoing breast reconstruction are susceptible to many consequences from this process including negative implications on the female psyche related to body image. This project assessed the satisfaction women had with their breast and body image before and after breast reconstruction. Demographic and characteristic data were also recorded. All of the participants were women undergoing surgical treatment for breast cancer. The influence breast reconstruction had on participants’ body image was evaluated using two validated tools. Questionnaires were distributed prior to and 4 to 8 weeks after breast reconstruction. The findings indicated that breast reconstruction negatively impacted half of the participants. Due to the small sample size used in this pilot project, trends related to participant characteristics and body image were not established, although some correlations were found. Findings from this work indicates future research should focus on: a) determining what common characteristics exist among women who suffer with their body image after breast reconstruction; b) developing a standardized tool to screen breast reconstruction patients for body image disruptions; and c) establishing what steps plastic surgery personnel should take to provide their patients with effective treatment when a patient does experience body image disturbances. The findings from this project will be used to educate healthcare providers who work with the breast cancer population on possible body image consequences their patients are subject to experiencing. The quality and consistency of preoperative education will also be assessed, as responses regarding the need for more pre-operative education varied. The ultimate goal is that this work will positively impact the quality of life for women after breast reconstruction. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 5 Breast Reconstruction: Effects on Body Image Following Surgery Breast cancer is the most common form of cancer in American females (Centers for Disease Control and Prevention, 2014). Numerous aspects of breast cancer, including mortality rates, treatment options, and genetic factors, are commonly explored and researched. An extremely important element of breast cancer, which unfortunately is frequently ignored, is the woman’s body image post mastectomy, during the breast reconstruction (BR) process and post BR. Of the patients who have a mastectomy, roughly 40% undergo BR; a number that continues to increase yearly (Albornoz et al., 2013). Nature of the Problem Patients who undergo BR are subject to the many possible side effects imposed during and after the process such as the loss of breast(s), discomfort, diminished sensation, visibility of surgical scars, and dermatological changes as a result of radiation therapy, along with multiple psychosocial factors creating concern. When attempting to understand the psychological distress BR patients are vulnerable to experiencing, one should consider all implications from BR and what they impose for the woman and her family. All of these factors contribute to the woman’s psyche and body image in relation to the appearance of one’s reconstructed breast(s). Fingeret et al. (2014) brought light to this issue by stating “body image is a critical issue for cancer patients undergoing reconstructive surgery, as they can experience disfigurement and functional impairment…[while] distress related to appearance changes can lead to various psychosocial difficulties” (p. 898). The seriousness of mental health in relation to BR should not be taken lightly. To put into perspective the importance of this concept, consider the following: Le et al. (2005) conducted a study that examined survival rates of women following a mastectomy and BR, with BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 6 the findings that these women had a significant excess of suicidal related deaths. The authors argued that there was minimal evidence available assessing the long-term survival rates in women who had breast implant placement post-mastectomy, prompting the need for their study (2005). Le et al. (2005) used a retrospective cohort study using Cox proportional hazards models to approximate hazard rate ratios on the time of survival until deceased (n = 4,385), with data gathered from San Francisco, Seattle, and Iowa. The research concluded that breast cancer patients who had breast implants had a better survival rate than women without implant reconstruction overall; however, the implant group’s mortality rate from suicide was greater than the non-implant group (Le et al., 2005). Although it was unclear if mortality was directly related to body image disturbances, more often than not, women who have had BR are confronted with body image challenges that they had not previously encountered prior to the procedure(s). Gaps in Literature Upon the review of currently available literature, it was easily determined that a definite correlation between BR and body image disruptions existed. Sackey, Sandelin, Frisell, Wickman, and Brandberg (2010) researched BR patient’s opinion of their appearance postoperatively, using a sample derived from both the Swedish National DCIS study and patients who had immediate BR surgery at Karolinska University Hospital (n = 162). Participants’ responses to three separate instruments were examined (the Short Form-36 for Health Related Quality of Life, the Hospital Anxiety and Depression Scale, and the Body Image Scale). By linearly transforming the scales to a 0-100 ranking, the authors were able to conclude that the women in their study should have received more preoperative education about what body image transformations to anticipate postoperatively than they were provided with. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 7 Moreover, Cohen et al. (2012) completed a qualitative study assessing the communication between breast cancer patients (n = 33) and their physicians, in regards to breastrelated body image concerns, and presented data gathered from questionnaires. Their work demonstrated that almost 70% of participants felt there was more the physician could have done to improve their comfort in discussing body image concerns related to their breasts. Cohen et al. (2012) also included physicians involved with BR (n = 10) in their research design and found that less than half of the providers initiated conversations with their patients about possible breast-related body image issues. Although numerous publications were found that examined the connection between BR and disruptions in body image, few reports were found that assessed specific characteristics of the women with BR and if these characteristics correlated with their body image perceptions postoperatively. Background of BR Process Upon being diagnosed with breast cancer, the typical timeline of events includes a referral to a general surgeon, who then refers the patient to a plastic surgeon. Current practices in breast surgery following a diagnosis of breast cancer tend to lean towards having immediate BR, as opposed to delayed BR (Robb, 2007). The first operation involved in immediate BR, termed stage one BR, consists of a general surgeon performing a mastectomy, followed by a plastic surgeon performing the first stage of BR, with both procedures occurring at the same operation (Boyd, Temple, & Ross, 2010). During this surgery, the general surgeon removes breast tissue and local lymph nodes, resulting in a mastectomy (National Institutes of Health, 2013). The plastic surgeon follows up by placing a thin sheet of cadaver tissue and a breast tissue expander where the mastectomy occurred, resulting in stage one BR (National Institutes of Health, 2016). BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 8 After this initial operation, the patient is typically seen in the plastic surgery office every 1 to 2 weeks for in-office procedures such as wound care, surgical drain management, breast tissue expansions, and others as required. Once full expansion is achieved and all other treatments are completed, such as chemotherapy and radiation, the patient undergoes a second operation. This surgery is termed stage two BR and involves the plastic surgeon exchanging the tissue expander for a permanent breast implant (Nahabedian, 2016). Because BR patient encounters are most frequently with the plastic surgical team, and this environment is where much of the BR occurs, a large majority of body image concerns related to BR can be discovered here. Needs Assessment North Carolina’s Mecklenburg County has a growth rate that is 3 times higher than that of the national average (12.4%), is the largest and most populous county in both of the Carolinas, and is projected to continue experiencing rapid growth through 2020 (United States Census Bureau, n.d.). From 2006 to 2010, Mecklenburg County’s citizens experienced an increased incidence of newly diagnosed breast cancer cases, when compared North Carolina rates with 130.6 per 100,000 and 126.5 per 100,000 females diagnosed with breast cancer on an annual basis, respectively (North Carolina State Center for Health Statistics, 2013). This location’s increased incidence rate may be related to the larger number of medical resources available in the area to discover the disease. Furthermore, Morris, Feig, Drexler, and Lehman (2015) projected that improvements in screening tools may continue to increase the breast cancer incidence rate in general, since many cases detected by advances in mammography would otherwise potentially never evolve to the point of dangerous clinical manifestations within the female’s lifetime. Nevertheless, breast cancer rates directly influence BR rates. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 9 On average, women who reside in urban communities are more likely to opt for BR following their mastectomy than women who reside in rural locations (Tseng et al., 2010). Oddly enough, there are only six private BR surgeons who collaborate care with the two major hospital systems in Mecklenburg County (Susan G. Komen of Charlotte, 2015). The scant quantity of collaborating plastic surgeons may be a consequence of low compensation for BR, with a recent survey of plastic surgeons nationwide indicating that roughly 50% had reduced the amount of BR they performed due to the little reimbursement received for services (Sando, Malay, Kozlow, Chung, & Momoh, 2014). Susan G. Komen of Charlotte (2015) described the collaboration of care between the hospital system and the independent surgeon as a combined source for meeting the patient’s continuum of care, which included: screening, diagnosing, treating, following-up, and educating the woman. The above factors highlight the undeniable need this community has and set the basis for this project. With Mecklenburg County’s breast cancer rates steadily increasing, a rising number of women choosing to have reconstructive surgery (especially in urban communities); and literature that supported there was a dissatisfaction with body image following BR, there is a need for greater emphasis to be placed on caring for these patients holistically, which includes exploring the concept of body image. Plastic surgery clinicians are the ideal healthcare providers to administer this type of care, as this is the setting where the majority of BR body image concerns are identified. Project: Female Breast and Body Image Opinions Before and After BR and How to Improve BR Process This project assessed female opinions of their breast and body image prior to BR surgery and 4 to 8 weeks following BR surgery. Data regarding the demographical and individual BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 10 characteristics was examined. The goal of this project was to answer the questions: Do women with BR experience body image disturbances following their BR surgery and, if so, what are the characteristics of women who have disturbances in body image after BR surgery? Purpose The purpose of the project was to answer the questions: Do women with BR experience body image disturbances following their BR surgery and, if so, what are the characteristics of women who have disturbances in body image after BR surgery? The findings of this project can be used to: (a) help determine where future research in BR should be directed and (b) better inform the care plans for women undergoing BR. This information can be used to assuage some of the psychological disturbances BR patients commonly suffer from related to their body image. Understanding what connections exist between participant-specific characteristics and the degree of body image disruption can guide healthcare providers to better serve this population of women. The responses from participants regarding their views on their BR process can also be used to improve this process for future BR patients. Location This project was conducted within a private plastic surgery center located in Charlotte, North Carolina (N.C.) in Mecklenburg County. The practice cares for patients from both North and South Carolina; however, the majority of patients reside in Mecklenburg County. On an annual basis, approximately 50 women undergo BR procedures at this practice. Definition of Terms Mastectomy. An operation for breast cancer treatment or prevention that involves surgically removing the breast(s) (National Institutes of Health, 2013). BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 11 Breast reconstruction (BR). The plastic surgery techniques used after a mastectomy in attempt to construct what would resemble a normal breast in regards to shape, size, and appearance (American Society of Plastic Surgeons, 2016). Body image. What a person identifies their physical appearance as, established by a subjective self-assessment combined with responses from others (National Institutes of Health, n.d.). Theoretical Framework Jean Watson is a Doctor of Philosophy prepared nurse who distinguished herself by advancing nursing care toward a holistic model. Watson developed the original Theory of Human Caring while working as a nursing professor from 1975-1979 (Watson, 1979). The Theory of Human Caring was centralized around the transpersonal relationship between the healthcare provider and the patient, with caring as the focal point (Watson, 1979). As healthcare is always transforming, Watson continues to evolve the Theory of Human Caring. In 1988 Watson augmented her work to offer more contemporary concepts that can continue to be relevant in nursing (Watson, 1988). Although the theory progressed over the years, the theme always remained the same: a transpersonal connection between the two parties involved (provider and patient) is an essential element in unifying body, mind, and spirit (Watson, 1997). Nevertheless, this type of care was different in that it encouraged caring for all patient needs, contrary to historical practices of only treating the patient’s present, acute medical illness. Reflective Process An aspect of Watson’s philosophy that she considers to be a critical step for the progression of one’s role as a caregiver is the reflective process (Sitzman & Watson, 2013). The reflective process requires one to actively examine their experiences; therefore, they always have BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 12 past experiences in their present experiences (Sitzman & Watson, 2013). Using reflective processing produces a heightened awareness and essence of oneself and the patient (Cara, 2003). Self-inquiry can assist in accomplishing the process of reflection, such as asking oneself: “What is the meaning of caring for the persons and their families?; How do I define the person, environment, health/healing, and nursing?; How do I make a difference in people’s life and suffering?” (Cara, 2003, p. 9). The reflection process is not a foreign concept to the nursing world. Lukose, a nursing leader, promotes using of all of Watson’s ideas amongst her floor nursing staff, including a daily end of shift huddle that provides time for reflection (Lukose, 2011). Lukose believes this time for reflection enhances the care patients receive and employee satisfaction (Lukose, 2011). This concept of reflection is particularly important for the student nurse. In order for the novice nurse to successfully evolve into their professional caring role, they must learn from their encounters and contribute this knowledge to their practice of caring (Sitzman & Watson, 2013). Clark (2016) recognized the current climate in nursing education, which sets priority on students gaining technical skills, and challenged programs to incorporate reflective processing into their teaching method. Learning from reflective processing enhances the student nurse’s individuality, art, and principals in caring (Sitzman & Watson, 2013). Why Reflective Processing An experienced registered nurse (RN), but family nurse practitioner and doctor of nursing practice (DNP) student conducted this project. Because this project was a considerable portion of the required DNP curriculum, it was imperative to gain as much knowledge as possible from this opportunity. Utilizing the reflective process, as illustrated by Watson, provides support during the pursuit of transitioning from a RN into the advanced nursing practice role. Reflective BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 13 processing encourages the provision of care that is cognizant of past and present experiences (Sitzman & Watson, 2013). This will allow patients to benefit from previous knowledge gained as a RN, while receiving care that is conscious of the present advanced nursing practice role. The purpose of the project was to answer the questions: Do women with BR experience body image disturbances following their BR surgery and, if so, what are the characteristics of women who have disturbances in body image after BR surgery? The goal was to use this information, from a previous experience, to improve the BR process, for future experiences. This models Watson’s philosophy on the reflection process and how it is applicable to past, present, and future patient encounters. Furthermore, continuous self-reflection is necessary to mature into one’s professional role (Watson, 1985). This project encouraged questions to reflect upon previous, current, and future experiences, as well as areas of self-growth (see Table 1). According to Cara (2003, p. 9), “such questions can help the nurse reflect upon his/her caring practice and contribute to the meaningfulness of professional life.” Review of Literature The review of the literature is as follows: (a) literature that discusses the trends in breast cancer surgeries; (b) literature that identifies the impacts of BR on body image; (c) demographic and other characteristics of breast cancer surgery patients; and (d) predictors of body image disturbances. Trends in the Surgical Treatments for Breast Cancer According to Dragun, Huang, Tucker, and Spanos (2012), mastectomy, as opposed to breast conservatory surgeries such as a lumpectomy and radiation, was declining as the most popular form of breast cancer intervention until 2005. Currently, however, a reversal of this trend is apparent for all age groups (Dragun, Huang, Tucker, & Spanos, 2012). With more BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 14 patients opting for a mastectomy, the BR population will continue to expand. In fact, Congress recently enacted the Breast Cancer Patient Education Act (BCPEA) in 2015, a bill that informs all women diagnosed with breast cancer of their rights to having BR (American Society of Plastic Surgeons, 2015). For years health insurance companies that provided breast cancer coverage were legally required to also issue coverage for BR services (American Society of Plastic Surgeons, 2015). However, many women diagnosed with breast cancer did not take advantage of this incentive. Experts believed this was related to women being uninformed about the required coverage for BR procedures and a lack of knowledge on BR in general (American Society of Plastic Surgeons, 2015). Now, because of the passage of BCPEA, the Secretary of Health and Human Services must create and launch an educational campaign that affords women diagnosed with breast cancer knowledge about their available insurance coverage and all of their BR options (American Society of Plastic Surgeons, 2015). The literature on trends in surgical treatment of breast cancer supports this project because it confirms that the target population for this project, women with BR, will continue to expand. Literature on the passage of BCPEA suggests that this will also impact the already expanding BR population. Because having a mastectomy and BR is developing into the popular choice of surgical intervention for breast cancer treatment, healthcare providers need to understand the struggles this patient population is subject to. Body Image in BR Patients BR surgery has been posited to improve perceived body image following breast cancer surgery. Fang, Shu, and Chang (2013) examined BR as a potential intervention to improve the body image of women with breast cancer. The authors conducted a meta-analysis of studies published from 1970-2010 that described perceptions of body image in women who had BR BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 15 surgery compared to those who underwent breast conservation surgery (BCS). The inclusion criteria for studies in the meta-analysis were (a) written in English; (b) measures body image of women with a diagnosis of breast cancer; and (c) comparison of BR to BCS or both BCS and modified radical mastectomy (MRM). The exclusion criteria were (a) studies that concentrated on prophylactic MRM; (b) those that did not compare two groups of women, such as one group with MRM or one with BR; and (c) studies that Cohen’s d could not be calculated due to inadequate data. After all inclusion and exclusion criterion were accounted for, there were 12 studies found eligible for inclusion. An array of instruments were used within these studies, with half of the studies using psychometrically validated tools and others using self-constructed instruments. In order to appropriately compare the studies’ results, the authors used the validated Body Image After Breast Cancer Questionnaire (BIBCQ). The BIBCQ is composed of six domains: vulnerability, body stigma, limitations, body concerns, transparency, and arm concerns. These six domains were used to categorize all of the included studies, depending on which domain(s) of body image had been assessed. Of the included studies’ instruments, none included vulnerability, limitations, or arm concerns. Nine of the instruments evaluated body stigma, seven evaluated body concerns, and five evaluated transparency. Of the body image domains that were included and the authors were able to examine, they found that women who had BR had a considerably decreased score for the body stigma domain of body image when compared to women who had BCS (Fang et al., 2013). Fang et al. (2013) acknowledged that their study was limited by the lack of a standardized tool that was used to measure body image consistently across the studies. One of the strengths of the study was that a variety of surgical approaches for breast cancer treatment were included amongst participants. The authors concluded that women should be BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 16 offered realistic guidance when selecting which surgical option they wanted for their breast cancer treatment. Hsu et al. (2014) studied women who had BR and at a later date underwent a cosmetic procedure such as liposuction or a facelift. Their goal was to determine if BR was an influential factor in their decision to have plastic surgery. This retrospective study included patients from 2005 to 2012 at the University of Pennsylvania Health System and provided participants (n = 42) with a questionnaire that assessed the factors impacting their decision to have an elective procedure. The authors found that 69% of the participants felt more self-conscious of their appearance post-BR and 61.9% decided to have the additional surgery with hopes of improving their self-image (Hsu et al., 2014). During the process of analyzing charts to determine BR patients that later underwent a cosmetic procedure, Hsu et al. found that roughly 10% of women with BR had a subsequent plastic surgery procedure (2014). With the understanding that cosmetic procedures are an out of pocket expense raises the question, if more women with BR were financially capable of affording plastic surgery, would this have markedly increased the 10% value? This uncertainty is a limitation to Hsu et al.’s 2014 study findings. Performing an in-depth evaluation and taking into consideration the results of this study were still warranted for this author, as the site of implementation for the proposed project is in the plastic surgical setting, where a large amount of cosmetic procedures are performed. The review of literature about body image in BR patients supports the need for this project because woman can struggle with their body image after BR. The healthcare personnel who care for this population of women must be able to identify this. The site of implementation has never formally evaluated their BR patients for possible body image disturbances after BR. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 17 To have the knowledge that this patient population frequently suffers from body image disturbances, but to not assess for such disturbances, would be a disservice to these women. Demographics and Other Characteristics of Breast Cancer Surgery Patients Age. The life stage a person is at upon a diagnosis of cancer can weigh heavily on their ability to cope with the disease. Generally speaking, being of younger age negatively impacts cancer patients’ mental health outcomes, as having a younger age at the time of a cancer diagnosis is classified as a risk factor for poorer psychiatric outcomes (Naughton & Weaver, 2014). Naughton and Weaver (2014) determined that younger or middle-aged adults were confronted with further stressors than the older adult diagnosed with cancer, such as hardships of coping with infertility at a young age, caring for their current children, work demands, and less saving funds available to cover the financial burdens of treatment (Naughton & Weaver, 2014). Breast cancer patients were not exempt from similar outcomes. Naughton and Weaver (2014) found that younger aged women with breast cancer experienced “impaired sexual functioning” and “feeling ‘out of sync’ with their friends and peers” (p. 284). This is noteworthy because breast cancer is one of the most common types of cancers seen in the younger adult population (American Cancer Society, 2016). Additionally, this age group more frequently opts to have BR than any other age group (American Society of Plastic Surgeons, 2015). Hence, if a younger age at the time of cancer diagnosis results in an increased risk of mental health disturbances, breast cancer is one of the most common cancers found in younger adults, and younger women are more apt to undergo BR, then age may be a major contributing factor to the consequences imposed on body image for BR patients. Unfortunately, younger age is not the only characteristic BR patients possess that predisposes them to body image disturbances. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 18 Identity. As defined earlier, body image is the physical appearance aspect of one’s identity. According to Jones (2004), “the female breast is part of the woman’s identity and femininity” (p. 15). If this statement is true and BR patients have the same view of their feminine identity being connected to their breasts, then BR has the potential to impact a woman’s body image. Boer and Slatman (2014) examined reactions women had to their breast cancer diagnosis and treatment. Using a qualitative approach, the authors analyzed the participants’ self-portrayal through blog posts. The study revealed that women’s perceptions of being diagnosed with cancer was not the sole contributor to the disturbances they experienced; thoughts of their feminine identity being put into jeopardy because of the breast cancer treatments was also a contributor to the disturbances they experienced (Boer & Slatman, 2014). Cohen et al. (2012), using the Breast Evaluation Questionnaire (BEQ), found that about three out of four BR patients (n = 33) did not feel comfortable in regards to the appearance of their breast when undressed and alone, and seven out of eight were not pleased with the general appearance of their breasts. Upon assimilating the above findings, which reveal that BR patients are more vulnerable to body image disturbances related to their treatment and the effects it has on their feminine identity, one could assume such anguish may lead to further psychological distress. A particular mental illness of concern would be the development of major depressive disorder due to their identity disturbances. The review of literature on demographics and other characteristics of breast cancer surgery patients support the need for this project because if body image disturbances are identified in a BR patient, appropriate intervention can be provided to address these concerns. Detecting body image disturbances shortly after BR will permit an early intervention, in hopes of preventing further psychological suffering. Allowing for the patient to continue suffering BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 19 without intervening could lead to long-term mental health conditions. Although the plastic surgery team may not be the ideal candidate to treat mental health conditions, they can refer the BR patient to a provider who specializes in treating such illnesses. Predictors of Body Image Disturbances Understanding the significant psychosocial threats cancer patients may experience, Fingeret, Teo, and Epner (2013) reviewed available literature to determine possible treatment approaches for addressing body image disturbances that could be included into the care plans of cancer patients. Their work provided a summary of theoretical models from published works from 2003-2013 that discussed body image as applicable to cancer patients. Although they found that younger age, elevated body mass index (BMI), and postoperative complications may be risk factors for experiencing body image issues, the authors concluded that future research should be directed towards establishing “demographic, illness, and treatment-related” factors that can predict an increased risk of body image disturbances (2013, p. 636). This information could assist in the early detection of body image concerns and guide the intervention chosen. The review of the literature about predictors of body image disturbances supports the need for this project because the literature agreed that investigating specific characteristics is an important aspect of providing care to BR patients. If a provider understands which individual characteristics increases the female’s likelihood of experiencing body image disturbances after BR, they will have the opportunity to thoroughly evaluate the patients who possess these characteristics. Summary of Literature Review The review of literature was as follows: (a) literature that discusses the trends in breast cancer surgeries; (b) literature that identifies the impact of BR on body image; (c) BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 20 demographic and other characteristics of breast cancer surgery patients; and (d) predictors of body image disturbances. The literature corroborated that the current trends for surgical intervention in breast cancer treatment includes mastectomy and BR. Of the women who undergo a mastectomy and BR, body image is a major area of concern. Women may possess certain characteristics that increase their probability of suffering from body image disturbances after BR. Similarities among the studies reviewed, with regards to BR and body image supports that women struggle with body image post BR. Conclusions drawn from previously published works indicates that the body image of BR patients deserves more attention than what is normally given. Gaps in knowledge were related to the limited availability of previous research assessing the demographics and characteristics of women with BR and whether or not these qualities influenced the degree of body image disturbances the woman experienced. The need for this project is supported by the trends of increasing mastectomy and BR rates. The fact that this patient population continues to expand, coupled with research that supports negative body image perceptions following BR, further justifies the need for a project that focuses on this population of women. Additionally, this project was the first to explore perceptions of body image in BR patients at the site of implementation, and no current practices were in place to address the needs that BR patients may have regarding body image postoperatively, highlighting the need for inquiry in this area. Lastly, the project includes questions that will allow participants to provide feedback regarding their BR experience. This information can be used to improve the BR process for future patients at the site of implementation. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 21 Project The purpose of the project was to answer the questions: Do women with BR experience body image disturbances following their BR surgery and, if so, what are the characteristics of women who have disturbances in body image after BR surgery? The following is a description of the project and the findings. Methodology Design This was a correlational, one group pre-post assessment survey design to answer the project questions: Do women with BR experience body image disturbances following their BR surgery and, if so, what are the characteristics of women who have disturbances in body image after BR surgery? The participants completed the project instruments, Breast Evaluation Questionnaire (BEQ) (Anderson, Cunningham, Tafesse, & Lenderking, 2006) and Body Image after Breast Cancer Questionnaire (BIBCQ) (Baxter et al., 2006), ≤ 14 days prior to their initial BR operation. The participants once again completed the BEQ and BIBCQ at 4 to 8 weeks post this operation for comparison purposes. Additionally, participants responded to a questionnaire that assessed individual demographic characteristics. Participant self-report generated all responses and medical records were not utilized for any of the data collection. The Institutional Review Board of East Carolina University provided approval for this project. Setting This project took place at an outpatient, private plastic surgery office located in Charlotte, North Carolina. The owner and chief operator granted the principal investigator (PI) permission to conduct the project within his institution. The practice serves approximately 50 women undergoing BR surgery annually. For the women who have undergone BR surgery at this BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 22 practice, roughly one half are Caucasian, one third are African-American, and the rest are from various ethnic groups including Hispanic, Asian, and multiracial. Their ages range from 24 to 72 years at the time of their first BR surgery, with the majority of initial BR surgeries occurring between the ages of 35 to 60 years of age. Their household incomes range from $28,000 to $445,000, with the majority of household incomes falling between $50,000 to $100,000. Sample A convenience sample was used for this project’s recruitment. Six women were found eligible to participate. They were recruited over a 3-month period (October 2016 to December 2016). Inclusion criteria were: (a) female gender; (b) age ≥ 18 years; (c) English-speaking; (d) presenting to the practice as a BR patient; and (e) willing to participate in this project. All participants were initially approached by the plastic surgeon to avoid perceptions of potential for coercion in their decision-making process. Patients who expressed interest in joining the project were referred to the PI for further information. The PI was the only clinician who offered the option of joining the option. Invitation was extended to BR patients from 7 to 60 days prior to their first operation. All involvement of participants was of voluntary nature and no compensation was offered. Methods Participant appointments. Pre-operative appointments. Upon verbally agreeing to partake in the project, participants were scheduled for an appointment with the PI to discuss the project information in further detail and confirm participation. For their convenience, their stage one pre-operative appointment scheduled time was extended to accommodate for this meeting at the same appointment, removing the burden of having to come into the office at another time for an BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 23 additional appointment. These visits were with the PI only and were ≤ 7 days prior to their stage one BR surgery. At this visit, each participant was brought into a private examination room. The project was discussed in detail including: participants would be assigned a coded number and their first and last initial would be recorded on the master-key document only; expectation of questionnaire completion on two separate occasions; only the participant’s assigned code would be contained on questionnaires; no data would be gathered from their medical record; total time needed for participation would be approximately ≤ 1 hour; and participating would not change their care. It was reiterated that: participation was of voluntary nature; choosing to participate or declining to participate would have absolutely no affect on the care they received; no compensation would be provided for joining; and they would be capable of withdrawing at anytime they wished. Lastly, participants were informed that the information they provide would be used in the project’s aggregate data to determine if patients of BR experience body image disturbances and if there were trends associated with individuals who experience body image disturbances. The participants were then provided with the program consent form (see Appendix B) and given time alone in the examination room to read over the document. After 15 minutes, the PI returned to the room and discussed the consent with the participant. All questions and concerns were addressed. All participants were given the option of taking the consent home with them and thinking about their decision longer, if needed. The PI requested a definitive answer of participation or declination within 48 hours of this encounter. After the consent was signed and witnessed, the participant was given two questionnaires to complete in entirety, the BEQ and BIBCQ (see Instrument section for questionnaire details). Participants were also given the participant characteristic form and asked to answer questions 1- BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 24 10 only at this time. The participants were then left alone in the examination room in order to complete these questionnaires (Time 1). Once the project appointment concluded, the stage one BR pre-operative appointment took place. These appointments began by performing a preoperative examination of the patient. Preoperative instructions were then discussed with patients, such as not consuming any food or liquid after midnight the evening prior to surgery, which prescription medications to withhold prior to surgery, and the schedule of surgical times. Postoperative care instructions were then discussed and patients were provided with a written form to take home as a guide. Patients were given a prescription antibiotic and pain medication to begin after surgery. Photos were taken of all surgical sites. Consents were obtained for every procedure to be performed. None of the described, normal preoperative appointment occurrences were altered for the participants of the project in anyway. Post-operative appointments. Under usual circumstances, stage one of the BR process consists of a mastectomy and lymph node biopsy by the general surgeon, followed by cadaver tissue placement and expander insertion by the plastic surgeon (Namnoum, 2009). More recently, a direct-to-implant approach has been used for select candidates, which obviates the need for expanders or a two-staged approach (Colwell, 2012). These surgeries are performed in a back-to-back routine, leading to a full surgical time of roughly 5 hours for the first operation, depending on if a unilateral or bilateral BR approach is used. In accordance with the usual care of BR patients in regards to the chronology of events, participants returned for stage one BR postoperative follow-up visits on a weekly basis until all four surgical drains were discontinued. This usually occurs around 14 to 20 days after the surgery. Once all drains were discontinued, participants returned every 14 to 21 days for breast expansion, until the expander was filled to BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 25 the desired capacity. The length of time it takes to get to the final expansion varies depending on the woman’s overall body habitus, maximum fluid capacity of the expander placed, skin cooperation, need for chemotherapy or radiation therapy, and possibly other contributing factors. The expansion process was not applicable to the participants who underwent a direct-to-implant procedure. Project participants completed the BEQ and the BIBCQ at 4 to 8 weeks postoperatively (Time 2) to assess the participants’ postoperative BR body image. At this time, the remaining participant characteristic form, questions 11-19, were also completed. The time frame of 4 to 8 weeks postoperatively to complete the second round of questionnaires was selected because previous studies indicated that the vast majority of surgical site infections develop ≤ 30 days postoperatively (Barie, 2002). Additionally, a seroma, which is the collection of serous fluid at or near the surgical site, is the most common complication of BR surgery and can occur immediately or within a few weeks postoperatively (Fu et al., 2011). Waiting to re-administer the questionnaires until 4 to 8 weeks after surgery ensured that responses would represent the impact postoperative complications had on participants, if a complication did occur. Protection of Human Subjects To verify the protection of human subjects, the institutional review board of East Carolina University approved this project (see Appendix A). Informed consent was issued to all participants in the form of verbal and written communication. The consent included information about the project, voluntary nature of participation, and ability for participants to withdraw at any time without consequence. To ensure confidentiality, all participants were coded in a sequential fashion depending on when their appointment occurred (example: 1, 2, 3, 4…). Each participant’s first and last initial was recorded followed by their assigned number in a single BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 26 document that contained all other participants initials and assigned code (example: X.X.=1; Z.Z.=2). This master-key document was stored at all times in a locked box, which was kept in a locked drawer at the site of project implementation. Only the PI had the access key. All other documents (BEQ, BIBCQ, and participant characteristic form) only contained the participant’s assigned number for purposes of preoperative and postoperative comparison. These questionnaires were kept in a different key locked box, which was stored in a locked closet separate from the master document. Only the PI had access to this locked closet. All documents will be kept secured in these locations until 6 years after the conclusion of this project. At that time, the PI will destroy the documents by shredding the paper. Prior to agreeing or declining participation, women were informed that declination of participation would not jeopardize their care. Instruments Breast Evaluation Questionnaire. The Breast Evaluation Questionnaire (BEQ) (Anderson, Cunningham, Tafesse, & Lenderking, 2006) is a 55-item scale that is designed to assess breast satisfaction and quality-of-life outcomes among breast surgery patients. Responses are rated on a 5-point Likert scale, with 1 equal to “very dissatisfied or very uncomfortable,” and 5 equal to either “very satisfied or very comfortable,” depending on the type of question asked. The BEQ (see Appendix C) consists of three parts with questions about the level of comfort with the size, shape, and firmness of breasts in several settings; the degree of comfort with general appearance and appearance of the breasts in several contexts; along with questions that inquire about the level of satisfaction of the appearance of the breast for the patient, spouse, sexual partner, and others. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 27 The BEQ was validated on 1,244 women seeking augmentation mammoplasty by obtaining questionnaires preoperatively and again at years 1, 2, and 3 postoperatively. Women ranged in age from 18 to 60 years, with a mean age of 31 years. The majority of women (47%) were married, white (91.1%), and had an annual family income of $20,000 to $60,000 (47%). Most (64%) were college graduates or had some previous college education. A factor analysis supported that the BEQ is optimally scored as three factors: (1) comfort not fully dressed, (2) comfort fully dressed, and (3) satisfaction with breast attributes. Analysis of discriminant validity when compared to 2 other similar scales (the Multi-Dimensional Body Self-Relations Questionnaire and the physical self- subscale of the Tennessee Self-Concept Scale) revealed that the BEQ was related but distinct from the other measures. Internal consistency coefficients (Cronbach’s alpha) for the comfort not fully dressed, comfort fully dressed, and satisfaction factors of the BEQ ranged from 0.80 to 0.96 at 4 separate data collection points, demonstrating a high degree of reliability over time. Permission was obtained from the author to utilize this scale for the purposes of this project. Body Image after Breast Cancer Questionnaire. The Body Image after Breast Cancer Questionnaire (BIBCQ) (Baxter et al., 2006) was developed specifically for women with a diagnosis of breast cancer, in order to assess this population’s body image in relation to their breasts. Within the BIBCQ (see Appendix D), there are 45 common questions that all respondents reply to, six optional questions that are directed towards women with bilateral breasts, and two optional questions that are directed towards women who are without one or bilateral breasts. This tool is organized in a manner that examines body image in six domains: vulnerability (appraises sensitivity towards the body and it’s susceptibility to cancer and health); body stigma (appraises having the desire to conceal the body); limitations (appraises competency BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 28 and ability); body concerns (appraises opinions of body shape and appearance); transparency (appraises concerns in relation to noticeability of changes in appearance due to cancer); and arm concerns (appraises troubles related to arm appearance and symptoms). Responses are rated on two different 5-point Likert scales depending on the question asked, with 1 equal to “strongly disagree” and 5 equal to “strongly agree” or 1 equal to “never/almost never” and 5 equal to “always/almost always,” (Baxter et al., 2006). The BIBCQ was validated with 164 females with breast cancer who were at least 3 months post diagnosis. Women were recruited from multiple outpatient clinics at the University of Toronto. The majority of women were from the United States or Canada (65%), married (68%), not sexually active (51%), with a mean age of 61 years old. The women were first tested at baseline with a set of seven different, previously validated, questionnaires. Six of the questionnaires sampled body image and psychosocial conditions, and one questionnaire was unrelated (the Impact of Events Scale, Rosenberg Self-Esteem Inventory, Beck Depression Inventory, Multidimensional Body-Self Relations Questionnaire, EORTC Quality of Life Questionnaire, Derogatis Interview for Sexual Functioning, and Marlow-Crown Desirability Scale). Participants were then retested 2 weeks later with the BIBCQ only, in order to determine test-retest reliability. When the test and retest scores were compared, there was a mean total score of 96.5 for the original testing and 96.6 for retesting. These findings demonstrated that the BIBCQ had good reliability (0.77-0.87), determined by internal consistency and test-retest reproducibility. A control group of 116 women with no history of breast cancer was also included. Participants in the control groups were recruited from family practices and breast clinics. Their mean age was 54 years old, which was 7 years less than that of the group of women with breast cancer. The control group only completed the BIBCQ. Many of the BIBCQ BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 29 questions were excluded from this group, as without having a breast surgical history there were likely no arm concerns in relation to their breasts, and responding to this question may have skewed other responses. Much of the control group’s responses were found to be similar to that of the cancer groups, except for the vulnerability category. These similarities were likely related to the non-applicability of many questions. Ultimately, the BIBCQ was found to be useful in measuring the body image concerns of women with breast cancer (Baxter et al., 2006). Permission was obtained from the author to utilize this scale for the purposes of this project. Participant Characteristics Form. The participant characteristics form (see Appendix E) was developed by the PI of this project to assess each participant as an individual. This form includes questions of both multiple choice and open-ended format. Inquiries contained within the form addresses basic demographical data, such as respondent age and ethnicity, and specific characteristic data, such as respondent breast cancer treatments and complications related to BR. The PI found all queries pertinent for inclusion, as each response could possibly influence the participant’s resulting body image perception. This tool was key in not only determining individual characteristics that may impact the effects of BR on body image, but also in determining areas of the BR process in need of improvement. Data Collection Distribution of questionnaires. Participants were given a printed version of the BEQ, BIBCQ, and participant characteristic form at their preoperative visit. They were instructed to respond to all items of the BEQ and BIBCQ, and items 1-10 of the participant characteristic form at that time. This completion occurred at ≤ 1 week prior to any BR surgical procedure (Time 1). The questionnaires were then re-administered 4 to 8 weeks after their operation had occurred (Time 2). At that time, the BEQ and BIBCQ were completed in their entirety again. The BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 30 participants also received the demographic characteristics form and were instructed to respond to the remaining questions, 11-19. No other data or interactions took place. Participant and data safety. All issued surveys contained the participant’s assigned number to allow for the comparison at each data collection point. Each BEQ and BIBCQ was dated to confirm whether it was the initial or final response by the participant. No other identifying information was written on the questionnaires. Upon the completion of each questionnaire, documents were placed in an envelope and stored in a key locked box marked “BEQ/BIBCQ.” The box and contents were kept secured in a locked closet at the project’s setting. Only the PI had key access. Breast Evaluation Questionnaires. The BEQ responses were evaluated using a 5-point Likert scale. For this tool, 1 represented the least level of satisfaction or comfort, where as 5 represented the greatest level of satisfaction or comfort. Body Image after Breast Cancer Questionnaires. Question numbers 24 and 51 were excluded from the BIBCQ surveys, as these questions were directed towards women who only had a mastectomy without BR and all of the women in this project had undergone a BR procedure. In general, for interpretation of BIBCQ scores, the lower the total score the more positive a respondent views their body image and the higher the total score the more negative a respondent views their body image. With the previously discussed questions excluded, the least possible score, which would indicate the highest and best view of one’s body image, was 51. The highest possible score, which would indicate the lowest and worst view of one’s body image, was 255. BEQ and BIBCQ. As previously discussed in this paper, much of the available literature indicated a strong association between BR and insult to body image. Thus, it was BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 31 determined prior to conducting this project that if a participant indicated a disturbed view of their body image after BR, as evidenced by the comparison of their Time 1 and Time 2 BEQ and BIBCQ scores, that BR did in fact negatively impact that participant’s breast satisfaction, quality of life, and body image. If a participant indicated an unchanged or better personal view of their body image after BR, as evidenced by the comparison of their Time 1 and Time 2 BEQ and BIBCQ scores, than BR did not negatively impact that participant’s breast satisfaction, quality of life, and body image. Participant characteristic form. This tool was used to assess each participant’s individual attributes. The data gathered from this form was employed to discern whether or not demographical and characteristic trends are associated with the level of body image changes women experience after BR and if these factors should be explored more thoroughly in the future. It was also pertinent in discovering areas in need of improvement within the practice, as it asked for respondents to comment on their BR process. Limitations Generalization. As with any project in healthcare, there were limitations associated with this project. The fact that participant recruitment was restricted to a single practice utilizing a convenience sample design was a limitation. Findings were limited geographically to a small area of North Carolina and to one plastic surgical practice. Therefore, findings may have been different if subjects were gathered using a multi-site approach. All of the participants were female and seeking BR surgical options, thus the findings from this project do not represent effects of other reconstructive surgery outcomes on body image or the effects in the male population. Also, each plastic surgeon’s strengths and capabilities differ depending on training, years of experience, and preferred surgical methods. The plastic surgeon in this project had BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 32 roughly 20 years of plastic and reconstructive surgery experience and extensive training. BR patients of a plastic surgeon with training and experience that differs from that of the plastic surgeon used in this project may produce findings that vary. Time restraints. A small sample size related to project time restraints on the recruitment period factored into the limitations as well. On average, a complete two-staged BR process can take ≥ 200 days; therefore, obstacles were encountered related to the distribution of questionnaires upon full completion of BR. A more complex weakness was the inability to incorporate long-term satisfaction rates. Given time, BR patients could be granted with the opportunity to adjust to their new body image and therefore their results would improve, or the body image disturbances they experience could intensify and therefore their results would worsen. Allowing for more time could have resulted in an improved or worsened post BR body image scores, something this project was unable to accommodate to due to time constraints. No control group. This project was limited to the body image of women seeking BR and no control group was utilized. Therefore, these results do not compare the body image findings for patients who undergo a cosmetic breast procedure, such as breast augmentation or mastopexy. Utilization of a control group may have determined that all women undergoing breast surgery, whether cosmetic or reconstructive, experience a degree of change in body image after any breast procedure. Results Sample Demographics Per project requirements, all participants were female, ≥ 18 years of age, and had a scheduled BR procedure within 7 days following recruitment. All participants were English BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 33 speaking and had some sort of medical health insurance plan. A table summarizing participant responses was completed (See Table 2). The age of participants ranged from 39 to 58 years old, with a mean age of 51 years old. The annual household income of participants ranged from $45,000 to $250,000, with a mean income of $142,000. Of the 6 participants, 4 were Caucasian, 1 was African American, and 1 participant preferred to not disclose the ethnicity with which she identified. In regards to marital status, half of the participants reported being currently married, 2 were divorced, and 1 was single. The following discusses characteristics specific to the participants that may contribute to project findings. Sample Characteristics BMI. Body mass index (BMI) is a calculation that assesses an individual’s body fat by evaluating their height and weight. According to the BMI scale, there are four categories: underweight= <18.5; normal weight= 18.5 to 24.9; overweight= 25 to 29.9; and obese= ≥30 (National Institutes of Health, n.d.). This measure was important to include, as women with a BMI above the established normal parameter have long been associated with greater BR complication rates (Nguyen et al., 2014). In this project, the BMI of participants ranged from 20 to 28, with 4 participants falling in the category of normal weight and 2 participants falling the category of overweight. Pregnancy history. Obtaining a thorough obstetrics history from women undergoing BR is an important aspect of care for many reasons. After undergoing BR, a female loses the ability to breastfeed if she were to have children in the future. Further, if chemotherapy is used as part of the female’s breast cancer treatment, fertility issues will be inevitable unless preservation procedures are employed prior to starting treatment (Mahajan, 2015). All of these concerns BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 34 should be addressed early in their care, as younger females who are without children may experience much grief related to these treatment outcomes. For this project, 4 of the women previously had children and 2 never had children. All of the women who had children had breastfed in the past. Close contact with BR. As one can imagine, having a close contact that has previously underwent BR may help ease the process for patients. Seeing a close friend or family member continuing to thrive long-term after BR and understanding that they have a contact for support during the process may provide them with comfort. When questioned if they had any family members or friends with BR, half of the participants reported they did have a family member or friend who had BR in the past. Breast cancer history. A prophylactic mastectomy is considered a surgical option to reduce a female’s likelihood of developing breast cancer. Many factors can influence the decision to have a prophylactic mastectomy, such as genetic testing results revealing an individual is at a higher risk of developing breast cancer within their lifetime when compared to the general population or the presence of a strong family history of breast cancer (National Institutes of Health, n.d.). As one can imagine, a prophylactic mastectomy without a history of breast cancer typically requires less treatment, as lymph nodes are usually spared and there is no need for chemotherapy or radiation. With the use of a prophylactic mastectomy as a preventative for breast cancer continuing to become more common, determining if each participant had a personal history of breast cancer or if they opted for BR as a preventative method was an essential inquiry. In this project, 100% of the participants had a past or present personal diagnosis of breast cancer. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 35 Findings Half of the participants (n = 6) had an overall decreased body image perception after BR. As previously described, the BIBCQ evaluates a total of six body image domains. Of the 6 participants, 5 had scores that indicated their body image perception had worsened after BR in ≥ 2 of the body image domains. Decrease in body image perception and individual characteristics. There is a possibility that trends exist among those who struggle with body image post BR and individual characteristics, as the 2 participants who had postoperative complications also had an overall decreased body image perception. The two postoperative complications that occurred in were 1) infection treated with implant removal and 2) infection treated with antimicrobial therapy. Even more compelling, 3 participants were also treated with either chemotherapy or radiation along with their mastectomy as an additional treatment for breast cancer. These same participants were the 3 women who were found to have an overall decreased body image perception after BR. Increase in body image perception and individual characteristics. In regards to the participants who did not experience an overall insult to their body image after BR, none of these participants required chemotherapy or radiation as an adjunct to their mastectomy for breast cancer treatment. Additionally, all 3 of these participants had a one-stage, direct-to-implant BR surgery. Lastly, none of these 3 participants suffered any postoperative complications. Participant provided suggestions. Included in the characteristic form were questions that inquired about what participants believed would have been helpful to them during their BR process, the worst and best parts of their BR experience, short and long-term concerns related to BR, and advice for future BR patients. The questions yielded varying responses, with 2 participants reporting they felt that having more preoperative education would have been BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 36 beneficial for their BR process and 2 participants reporting having a mentor would have been helpful. The two most common complaints reported were related to surgical drains and postoperative discomfort. Discussion As stated, this was a small-scaled, pilot project that was conducted to obtain generalized knowledge on the hardships faced by BR patients and to find areas of BR in need of improvement. Therefore, the findings from this project cannot be considered statistically significant, as there were a total of 6 participants. Rather, the findings should be taken into consideration and contribute to prospective work. Participant responses can also be used to modify the current practices in place at the site of implementation to better serve BR patients. This pilot project found that half of the participants faced body image concerns they had not previously experienced, as the results indicated 3 out of 6 participants had lower body image scores after BR surgery. All 3 of the participants who experienced an insult to body image were also the 3 participants who required chemotherapy or radiation therapy, in addition to a mastectomy for their breast cancer treatment. Obviously, withholding chemotherapy or radiation to preserve body image when the use of these treatment modalities is indicated would be impractical. However, the possibility of a relationship between BR patients that experience a decline in body image and the use of chemotherapy or radiation for treatment is worth investigating. Findings also demonstrated that 5 participants (n = 6) had a decreased perception in at least two of the body image domains post BR. The project findings indicated that the 3 participants who did not experience an overall decline in their body image perception after BR also had a direct-to-implant type of BR procedure. Although the one stage procedure is only applicable to select candidates, the benefits BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 37 from this type of BR approach can be immense. Rodriguez-Feliz and Codner (2015) reported a direct-to-implant approach does not carry any additional surgical risks and it obviates the use of tissue expanders or the need for two surgeries. The direct-to-implant approach is still an evolving technique and many plastic surgeons have been resistant to embracing this BR method (Rodriguez-Feliz & Codner, 2015). The possibility that this approach positively influences body image outcomes after BR warrants further investigation. Implication for Practice Interpreting the information gathered from this work in order to influence the current practices at the site of implementation was considered a priority. A thorough review of the feedback obtained from the participant demographic and characteristic form revealed varied responses in regards to the preoperative education provided to participants. As stated under methodology, the PI was the only clinician who performed the participants’ preoperative appointments. With the understanding that the same person provided preoperative patient education for all participants, one would expect to see similar results among all participants. However, this was not the case and these findings necessitated an internal review of the practice’s preoperative patient education standards. Currently, there is no protocol or checklist of specific topics to be review at each preoperative appointment. The following describes what the nursing staff typically reviews with patients at preoperative appointments: a) preparation for surgery (nothing to eat or drink after 2200 the evening prior to surgery, washing with an antimicrobial scrub on two separate occasions before surgery, removal of fingernail polish, and discontinuing any medication that has the potential to thin blood); b) postoperative prescriptions and pain management (taking antibiotic as prescribed and the use of an over the counter non-steroidal anti-inflammatory drug and BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 38 prescription narcotic for pain control after surgery); c) activity after surgery (activity restrictions, showering after surgery, and dressing care); and d) surgical drain care instructions. This education does not prepare the patient on what to expect concerning their appearance immediately following surgery. Furthermore, there is no required checklist to be completed by the nurse confirming that all pertinent preoperative education was addressed. This project exposed the lack of consistency among preoperative patient education as evidenced by the varied responses from participants. In an attempt to resolve this issue, clinical personnel at the practice are currently in the process of developing a preoperative patient education checklist for nursing staff to complete at each BR preoperative appointment. The framework that will be utilized to ensure that this checklist is effective will be the Institute for Healthcare Improvement (2016) Plan, Do, Study, Act (PDSA) model. The PDSA method has been widely used by hundreds of agencies as a structural device to test the changes experienced from a quality improvement project. This is an easy to use model that contains four phases, plan: the preliminary phase where a proposal is developed that will test the change; do: the actual implementation of the test; study: when assessing the effects of the change occurs; and act: the process of determining what revisions should be made from observations made (Institute for Healthcare Improvement, 2016). This same framework will be used to ensure that incorporating the checklist document produced favorable responses in the education provided preoperatively. After implementing this checklist, the practice can then reassess the BR patients’ views of the preoperative education they were provided with. At that time, the document can be modified accordingly. The plan is that completion of this documentation will be the responsibility of the nursing staff and a requirement for all BR preoperative appointments. Initiation of this measure may also BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 39 positively influence some of the other common complaints reported by participants. Surgical drains and postoperative discomfort were common themes found among the participants’ responses as the worst part of their BR process. Ensuring that discussions on surgical drain management and realistic expectations for postoperative discomfort occurs during the preoperative education can help prepare patients on what to anticipate. The current checklist draft also includes confirmation of patient understanding to education provided. Implication for Future Research Some of the findings from this project can be used to direct the trajectory of future research. It is worth investigating if a statistically significant correlation exists between BR patients who have chemotherapy and/or radiation therapy in adjunct to their breast cancer treatment and an increased probability of experiencing body image disturbances. If discovered to be true, the providers who work with women undergoing BR can use this information to screen for body image disturbances in this high-risk population of women who are additionally treated with chemotherapy and/or radiation therapy. Another relationship worthy of further research is the group of women who have a direct-to-implant BR surgical approach and if this method can positively influence body image perceptions postoperatively. If a definitive connection is established between the direct-to-implant approach and patient satisfaction, plastic surgeons may feel more inclined to adopt this technique for appropriate candidates. Conclusion The process of BR presents women with new challenges not yet experienced before, one of these challenges being the possibility of insult to body image. Healthcare providers who participate in the care of this population should be aware of the potential for body image disturbances. Understanding what factors influence one’s susceptibility to body image BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 40 disturbances will help providers identify at risk populations. This pilot project found that future research should be directed toward establishing if a true relationship exists among the body image of women undergoing BR and the use of chemotherapy or radiation. Also warranting further investigation is the influence direct-to-implant BR has on body image outcomes. Most importantly, participants reported what they believed would have improved their BR process. This information is vital for improving the care that this site’s BR patients receive in the future. Findings from this project will directly impact current practices at the site of implementation. As discovered from participant feedback, preoperative patient education is lacking consistency. Therefore, the development and initiation of a standard BR preoperative checklist will be instilled in future practices at the site. Establishing a checklist will lead to reproducible results for all nursing staff and patients. The goal is that this checklist will better prepare women on what to expect after BR surgery. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 41 References Albornoz, C. R., Bach, P. B., Mehrara, B. J., Disa, J. J., Pusic, A. L., McCarthy, C. M.,…Matros, E. (2013). A paradigm shift in U.S. breast reconstruction: Increasing implant rates. Plastic and Reconstructive Surgery, 131(1), 15-23. doi:10.1097/PRS.0b013e3182729cde American Cancer Society. (2016). Cancer in young adults. Retrieved on April 2, 2016 from http://www.cancer.org/cancer/cancerinyoungadults/index American heritage medical dictionary. (2008). Boston, MA: Houghton Mifflin Harcourt. American Society of Plastic Surgeons. (2016). What is breast reconstruction? 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The effects of symptomatic seroma on lymphedema symptoms following breast cancer treatment. Lymphology, 44(3), 134-143. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/22165584 Hsu, V. M., Tahiri, Y., Wes, A. M., Yan, C., Selber, J. C., Nelson, J. A., …Wu, L. C. (2014). Does breast reconstruction impact the decision of patients to pursue cosmetic surgery? Annals of Plastic Surgery. doi: 10.1097/SAP.0000000000000247 Institute for Healthcare Improvement. (2016). Plan-do-study-act worksheet. Retrieved on June 12, 2016 from http://www.ihi.org/resources/pages/tools/plandostudyactworksheet.aspx BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 44 Jones, D. P. (2004). Cultural views of the female breast. The ABNF Journal, 15(1), 15-21. Retrieved from https://www.questia.com/library/journal/1P3-591088101/cultural-viewsof-the-female-breast Le, G. M., O’Malley, D. O., Glaser, S. L., Lynch, C. F., Stanford, J. L., Keegan, T. H., & West, D. W. (2005). 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Immediate versus delayed breast reconstruction. Breast Cancer Research, 9(Supplement 1). doi:10.1186/bcr1692 Rodriguez-Feliz, J. & Codner, M.A. (2015). Embrace the change: Incorporating single-stage implant breast reconstruction into your practice. Plastic and Reconstructive Surgery, 136(2), 221-231. doi:10.1097/PRS.0000000000001448 Sackey, H., Sandelin, K., Frisell, J., Wickman, M., & Brandberg, Y. (2010). Ductal carcinoma in situ of the breast. Long-term follow-up of health-related quality of life, emotional reactions and body image. European Journal of Surgical Oncology, 36(8), 756-762. doi:10.1016/j.ejso.2010.06.016 Sando, I. C., Malay, S., Kozlow, J. H., Chung, K. C., & Momoh, A. O. (2014). Comprehensive breast reconstruction in an academic surgical practice- An evaluation of the financial impact. Plastic and Reconstructive Surgery, 136(6), 1131-1139. doi: 10.1097/PRS.0000000000000757 BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 46 Sitzman, K. & Watson, J. (2013). Caring science, mindful practice: Implementing Watson’s Human Caring Theory [ProQuest ebrary version]. Retreived from http://site.ebrary.com.jproxy.lib.ecu.edu/lib/eastcarolina/detail.action?docID=10828048 Susan G. Komen of Charlotte. (2015). Community Profile Report 2015. Retrieved from http://komencharlotte.org/wp-content/uploads/2013/10/Komen-Charlotte-2015Community-Profile-Report1.pdf Tseng, W. H., Stevenson, T. R., Canter, R. J., Chen, S. L., Khatri, V. P., Bold, R. J., & Martinez, S. R. (2010). Sacramento area breast cancer epidemiology study (SABES): Use of postmastectomy breast reconstruction along the rural to urban continuum. Plastic and Reconstructive Surgery, 126(6), 1815-1824. doi:10.1097/PRS.0b013e3181f444bc United States Census Bureau. (n.d.). Population projections. Retrieved on March 23, 2017 from https://www.census.gov/en.html U.S. Department of Health and Human Services, National Institutes of Health. (2016). Breast reconstruction implants. 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Retrieved on December 25, 2016 from https://www.cancer.gov/types/breast/risk-reducing-surgery-fact-sheet U.S. Department of Health and Human Services, National Institutes of Health, National Heart, Lung, and Blood Institute. (n.d.). Calculate your body mass index. Retrieved on December 25, 2016 from https://www.nhlbi.nih.gov/health/educational/lose_wt/BMI/bmicalc.htm Watson, J. (1997). The theory of human caring: Retrospective and Prospective. Nursing Science Quarterly, 10(1), 49-52. doi:10.1177/089431849701000114 Watson, J. (1988). New dimensions of human caring theory. Nursing Science Quarterly, 1(4), 175-181. doi: 10.1177/089431848800100411 Watson, J. (1985). Nursing: The philosophy and science of caring (2nd ed.). Niwot: University Press of Colorado. Watson, J. (1979). Nursing: The philosophy and science of caring. Boston: Little, Brown, and Company. Boulder, CO: Colorado Associated University Press. Watson, J. (n.d.). Theory of human caring. Retrieved from http://www.watsoncaringscience.org/images/features/library/THEORY%20OF%20HUM AN%20CARING_Website.pdf BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 48 Appendix A Institutional Review Board Approval EAST CAROLINA UNIVERSITY University & Medical Center Institutional Review Board Office 4N-70 Brody Medical Sciences Building· Mail Stop 682 600 Moye Boulevard · Greenville, NC 27834 Office 252-744-2914 · Fax 252-744-2284 · www.ecu.edu/irb Notification of Amendment Approval From: To: CC: Date: Re: Social/Behavioral IRB Laura Anglin Pamela Reis 9/22/2016 Ame1_UMCIRB 16-001290 UMCIRB 16-001290 Breast Reconstruction: Mentorship Program and Effects on Body Image Your Amendment has been reviewed and approved using expedited review for the period of 9/21/2016 to 9/10/2017 . It was the determination of the UMCIRB Chairperson (or designee) that this revision does not impact the overall risk/benefit ratio of the study and is appropriate for the population and procedures proposed. Please note that any further changes to this approved research may not be initiated without UMCIRB review except when necessary to eliminate an apparent immediate hazard to the participant. All unanticipated problems involving risks to participants and others must be promptly reported to the UMCIRB. A continuing or final review must be submitted to the UMCIRB prior to the date of study expiration. The investigator must adhere to all reporting requirements for this study. Approved consent documents with the IRB approval date stamped on the document should be used to consent participants (consent documents with the IRB approval date stamp are found under the Documents tab in the study workspace). The approval includes the following items: Document Participant Characteristics.docx(0.01) Participant Characteristics.docx(0.02) Participant Consent.doc(0.02) Description Surveys and Questionnaires Data Collection Sheet Consent Forms The Chairperson (or designee) does not have a potential for conflict of interest on this study. Appendix B BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 49 Participant Consent East Carolina University Informed Consent to Participate in Research Information to consider before taking part in research that has no more than minimal risk. Title of Research Study: Breast Reconstruction: Effects on Body Image Following Surgery and Female Characteristics Principal Investigator: Laura Grace Anglin, RN, BSN Institution: Capizzi MD Cosmetic Surgery Address: 900 East Blvd., Charlotte, N.C., 28203 Telephone #: (704) 655-8988 Researchers at East Carolina University (ECU) and Capizzi MD Cosmetic Surgery study issues related to society, health problems, environmental problems, behavior problems and the human condition. To do this, we need the help of volunteers who are willing to take part in research. Why am I being invited to take part in this research? This project proposes to assess female body image before and after breast reconstruction surgery. The objective is to determine: a) if any body image disturbances occur after BR surgery and b) what the characteristics are of women who are/are not at risk of body image disturbances following BR surgery. You are being invited to take part in this research because you are planning to have a breast reconstruction procedure. The decision to take part in this research is yours to make. By doing this research, we hope to learn from the information how to better serve women undergoing breast reconstruction in the future. If you volunteer to take part in this research, you will be 1 of about 6 people to do so. Are there reasons I should not take part in this research? I understand I should not volunteer for this if I am less than 18 years of age. What other choices do I have if I do not take part in this research? You can choose not to participate. If you decline to participate in this research you will receive usual care provided by Capizzi MD Cosmetic Surgery to patients with your condition. At no time will your decision to decline participation in this study negatively affect your care. Where is the research going to take place and how long will it last? The research will be conducted at Capizzi MD Cosmetic Surgery. You will need to come to Capizzi MD Cosmetic Surgery 2 times during the study. These 2 encounters can occur at your already scheduled preoperative and follow-up appointments. The total amount of time you will be asked to volunteer for this study is 1 hour over the next 6 months. What will I be asked to do? You will be asked to do the following: Complete two questionnaires prior to having your Stage I Breast Reconstruction procedure. The first questionnaire is the Breast Evaluation Questionnaire (BEQ). The BEQ is a tool that BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 50 assesses a woman’s satisfaction with her breast and quality-of-life outcomes. The second questionnaire is the Body Image after Breast Cancer Questionnaire (BIBCQ). The BIBCQ is a tool to assess a woman’s body image in relation to her breasts. The purpose of having you complete these questionnaires is to compare your results prior to surgery to your results after your surgery and determine if your attitudes towards your breast and body changed. Each of these tools should take about 10 minutes to complete, with a total of 20 minutes for both. 4-6 weeks after your initial breast reconstructive surgery, you will complete the BEQ and BIBCQ again. These should take about the same amount of time to complete as they did before. You will also complete a questionnaire that assesses your specific characteristics, such as race, insurance and martial status. You may complete these forms while at your already scheduled follow-up/expansion appointment. What might I experience if I take part in the research? We don’t know of any risks (the chance of harm) associated with this research. Any risks that may occur with this research are no more than what you would experience in everyday life. We don't know if you will benefit from taking part in this study. There may not be any personal benefit to you but the information gained by doing this research may help others in the future. Will I be paid for taking part in this research? We will not be able to pay you for the time you volunteer while being in this study. Will it cost me to take part in this research? It will not cost you any money to be part of the research. Who will know that I took part in this research and learn personal information about me? Only Capizzi MD Cosmetic Surgery and the Principle Investigator of the study (Laura G. Anglin, RN, BSN) will know you took part in this research. Your name, date of birth, phone number, or any other identifying information will not be shared for this research. How will you keep the information you collect about me secure? How long will you keep it? For this project, I will assign a number to you. Each time you complete one of the surveys you will not need to write your name, as I will have your assigned number on the document. The document, which contains the list of participants first and last initial only and their assigned number, will be kept in a locked box that will be placed in a locked closed at this facility, Capizzi MD Cosmetic Surgery. Each time you complete a survey it will be placed in the same locked box and closet. No information regarding any participant will be kept on a computer. All documents will be destroyed 6 years after the project concludes. What if I decide I don’t want to continue in this research? You can stop at any time after it has already started. There will be no consequences if you stop and you will not be criticized. You will not lose any benefits that you normally receive. The care you receive from Capizzi MD Cosmetic Surgery will not be affected by a decision to withdraw from the study. Who should I contact if I have questions? The people conducting this study will be able to answer any questions concerning this research, now or in the future. You may contact the Principal Investigator at (704) 655-8988 Monday to Thursday 9:00-5:00 and Friday 9:00-3:00. You may also email the Principal Investigator at [email protected] anytime. Are there any Conflicts of Interest I should know about? There are no conflicts of interest involved in this project. BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 51 I have decided I want to take part in this research. What should I do now? The person obtaining informed consent will ask you to read the following and if you agree, you should sign this form: I have read (or had read to me) all of the above information. I have had an opportunity to ask questions about things in this research I did not understand and have received satisfactory answers. I know that I can stop taking part in this study at any time. By signing this informed consent form, I am not giving up any of my rights. I have been given a copy of this consent document, and it is mine to keep. Participant's Name (PRINT) Signature _____________ Date Person Obtaining Informed Consent: I have conducted the initial informed consent process. I have orally reviewed the contents of the consent document with the person who has signed above, and answered all of the person’s questions about the research. Person Obtaining Consent (PRINT) Signature Date BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 52 Appendix C Breast Evaluation Questionnaire Enter the appropriate number for your answer. Enter only one choice per answer. Please answer every question. Do not leave any blank. 1. How satisfied or dissatisfied are you with each of the items below while engaging in intimate of sexual activities, in social or leisure activities, or in professional or job-related activities? Please rate yourself on the questions below by writing in the appropriate number from the scale below. 1 = Very dissatisfied 2 = Somewhat dissatisfied 3 = Neither satisfied nor dissatisfied Intimate or Sexual Activities 4 = Somewhat satisfied 5 = Very satisfied Leisure or Social Activities Professional or JobRelated Activities The size of your breasts? The shape of your breasts? The firmness of your breasts? 2. How comfortable or uncomfortable do you feel about each of the following items when alone, when with your boyfriend or an intimate partner, when around other women you know well (family or friends), when around men in general, when around other women you don’t know well (health club or dressing room), or when around a professional health care provider (doctor or nurse)? Please rate yourself on the questions below by writing in the appropriate number from the scale below. 1 = Very uncomfortable 2 = Somewhat uncomfortable 3 = Neither comfortable or uncomfortable Your general appearance fully dressed? Alone . Spouse or sexual partner . Men in general . Women you know well . Women you don’t know well . Health care provider . Your general appearance in a bathing suit? Alone . Spouse or sexual partner . Men in general . Women you know well . 4 = Somewhat comfortable 5 = Very comfortable BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 53 Women you don’t know well . Health care provider . Your general appearance naked? Alone . Spouse or sexual partner . Men in general . Women you know well . Women you don’t know well . Health care provider . 3. How satisfied with the general appearance of your breasts are the following people in your life? (If people within one category feel differently, rate the person whose opinion means the most to you.) Please rate yourself on the questions below by writing in the appropriate number from the scale below. 1 = Very dissatisfied 2 = Somewhat dissatisfied 3 = Neither satisfied nor dissatisfied 4 = Somewhat satisfied 5 = Very satisfied The general appearance of your breast? You yourself . Spouse of sexual partner . Parent(s) . Sibling(s) . Friend(s) . 4. How important is the size of your breasts to the following people in your life? If people within one category feel differently, rate the person whose opinion means the most to you.) Please rate yourself on the questions below by writing in the appropriate number from the scale below. 1 = Very unimportant 2 = Somewhat unimportant 3 = Neither important nor unimportant The size of your breasts? You yourself . Spouse of sexual partner Parent(s) . Sibling(s) . Friend(s) . . 4 = Somewhat important 5 = Very important BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 54 Appendix D Body Image after Breast Cancer Questionnaire The following pages contain statements about how people might think, feel, or behave after developing breast cancer. You are asked to indicate the way each statement pertains to you personally over the past month. Please read each statement carefully and decide how it applies to you. When answering, consider how you have felt over the past month. Your answers are confidential so please do not write your name on any of the pages. Using the scales listed below, indicate your answers by writing them to the left of the statements. There are two types of statements. For the first type of statement the following scale is used 1 = Strongly Disagree 2 = Disagree 3 = Neither Disagree 4 = Agree 5 = Strongly Agree Example 2 1. Skin Dryness is a problem for me. In the blank space enter 1 if you strongly disagree with the statement, 2 if you disagree with the statement, 3 if you neither agree nor disagree with the statement, 4 if you agree with the statement and 5 if you strongly agree with the statement. In this case the answer is 2, the person disagrees with the statement. In the second type of statement the following scale is used 1 = Never/Almost Never 2 = Infrequently 3 = Sometimes 4 = Often 5 = Always/Almost Always Example 4 1. I can use my arm normally. In the blank space enter 1 if the statement is never or almost never true, 2 if the statement is infrequently true, 3 if the statement is sometimes true, 4 if the statement is often true and 5 if the statement is always or almost always true. In this case the answer is 4, the person can often use their arm normally. Remember that there are no right or wrong answers; just give the answer that is true for you over the past month. Some questions may seem to be more important to you than others. Try to answer all questions to the best of your ability. There should be an answer that is true for you. It is important that you answer every item. Please be completely honest. Your responses are BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE confidential. Your name will never appear on this survey and once your survey is returned, anything that could identify you will be destroyed. 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. TYPE ONE STATEMENTS RESPONSES 1 = Strongly Disagree 2 = Disagree 3 = Neither Agree nor Disagree 4 = Agree 5 = Strongly Agree I try to hide my body. The feeling in my arm is normal. I avoid looking at my scars from breast surgery. I feel there is a time bomb inside of me. I am sleepy during the day. I am happy with my level of energy. I feel prone to cancer. I am satisfied with the shape of my body. I feel less feminine since cancer. I like my body. I feel comfortable about the way I look when I exercise. I would feel comfortable changing in a public change-room. I feel my body has been invaded. I am satisfied with the appearance of my arm. I feel my body has let me down. I like my looks just the way they are. Others have had to take over my duties. I feel that part of me must remain hidden. I am afraid of touching the scars from breast surgery. I am satisfied with the appearance of my hips. I avoid close physical contact such as hugging. I feel that something is taking over my body. I am satisfied with the shape of my buttocks. *The following questions pertain to your feelings about your breast or mastectomy site. If you are missing a breast(s) (if you have had a mastectomy without breast reconstruction) please answer question 24. If you are not missing a breast (if you have had a lumpectomy, a mastectomy with breast reconstruction, or no surgical treatment to your breasts) please skip questions 24 and answer questions 25 to 27. * Women who are missing one or both breasts should answer the following item. 24. I feel comfortable looking at my mastectomy. * Women who are not missing a breast should answer the following items. 25. I am happy with the position of my nipple. * 26. I am satisfied with the size of my breast. * 55 BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 27. 28. I feel comfortable when others see my breasts. * The appearance of my breast could disturb others. * 29. 30. 31. 32. 33. 34. 35. 36. 37. 38. 39. 40. 41. 42. 43. 44. 45. 46. 47. 48. 49. 50. TYPE TWO STATEMENTS RESPONSES 1 = Never/Almost Never 2 = Infrequently 3 = Sometimes 4 = Often 5 = Always/Almost Always I feel that people are looking at my chest. I avoid physical intimacy. I feel that people are looking at me. I hide my body when changing clothes. I worry that the cancer is spreading. I need to be reassured about the appearance of my bust. I think about breast cancer. Being tired interferes with my life. I feel sexually attractive when I am nude. Swelling of my arm is a problem for me. I worry about my body. I would keep my chest covered during sexual intimacy. I feel angry at my body. I need reassurance about my health. I can participate in normal activities. I have problems concentrating. My body stops me from doing things I want to do. I think my breasts appear uneven to others. Arm pain is a problem for me. I worry about minor aches and pains. I feel normal. I feel people can tell my breasts are not normal. *The following questions pertain to your feelings about your breast or mastectomy site. If you are missing a breast(s) (if you have had a mastectomy without breast reconstruction) please answer question 51. If you are not missing a breast (if you have had a lumpectomy, a mastectomy with breast reconstruction, or no surgical treatment to your breasts) please skip questions 51 and answer questions 52 and 53. * Women who are missing one or both breasts should answer the following item. 51. I worry about my prosthesis or padding slipping.* Women who are not missing a breast should answer the following items. 52. I think about my breast.* 53. My breast is painful to touch. * * Indicates optional items specific for surgical subgroups, exclude in general comparisons. 56 BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE Appendix E Breast Reconstruction and Body Image: Participant Characteristics Participant ID . Age in years . Annual family income . Please read the following questions and answer appropriately: Health insurance status: Insured Uninsured Race/ethnicity – check all that appropriately describes you: White Black or African American Hispanic, Latina, or Spanish Origin Asian/Asian Indian Middle Eastern or Northern African American Indian or Alaska Native Native Hawaiian or Other Pacific Islander Multiracial Other Prefer not to answer Marital status: Single Married Partnered and not Married Separated Divorced Widowed What is your current height and weight? Height Weight Do you have any children, and if so, how many? Never had children Yes I have children 57 BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 58 If you answered yes to the previous question, did you breastfeed? No, I did not breastfeed my children Yes, I did breastfeed at least one of my children Do you have any friends or family members who have had breast reconstruction? Yes No Did you have breast reconstruction due to a personal diagnosis of breast cancer or for breast cancer prophylaxis? Personal history Prophylaxis What kind of breast reconstruction did you have? (Select all that apply) Unilateral breast reconstruction (one breast) Bilateral breast reconstruction (both breasts) Nipple sparing breast reconstruction Two staged breast reconstruction with expanders to implants One staged breast reconstruction – straight to implants Latissimus dorsi flap Revision to a previous breast reconstruction surgery Have you had, or are there current plans for you to have, chemotherapy for breast cancer treatment? Yes No Have you had, or are there current plans for you to have, radiation therapy for breast cancer treatment? Yes No Have you had any medical complications from your breast reconstruction surgery, and if so, what was the complication(s) and treatment? (Select all that apply) No, I have not had any medical complications Yes, I had an infection that was treated with antibiotics Yes, I had an infection that was treated with expander removal Yes, I had an infection that was treated with breast implant removal Yes, I had a seroma that was treated with needle aspiration Yes, I had a seroma that was treated with drain placement Yes, I had/have lymphedema and my treatment is . Yes, I had a medical complication that is not listed above, which was , that was treated with . Do you feel that you had support during your breast reconstruction, and if so, from who? (Select all that apply) BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE Spouse Parent(s) Sibling(s) Child/Children Friend(s) Support group Medical team caring for me Other, is so please describe who No, I have not had any support during my breast reconstruction 59 . Which of the following do you think would have been helpful for you and your breast reconstruction process? (Select all that apply) A mentor More pre-operative education Referral to a professional counselor Other, if so, please specify: What has been the worst and/or best part of your breast reconstruction experience? What are your short-term and long-term concerns, if any? Short term: Long term: Do you have any advise for future breast reconstruction patients? BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 60 Table 1 Reflection Process What knowledge do I have from previous experiences? Past Experiences How can I use the knowledge I have gained in my past to help the patients I have now and in the future? What personal experiences have I had in the past that influences how I provide care? What are my responsibilities for this patient? What makes this BR patient unique and different from others? How will this impact their BR process? How does this patient perceive herself? Present Experiences What is it like to be in this patient’s position? What can I do to improve this patients BR process? How can I help this patient cope with their BR outcome? What should I focus on improving in the future? Future Experiences How will I care for BR patients in the future? How does this compare to the previous care I provided? What is similar about it? What is different about it? What did I learn from this process? Will this change the way I practice in the future? What did I do this time that was better than last time? Self-Growth What are the areas that I need to improve in? What differences do I see in my previous and current self? BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE 61 How do I define myself as a care provider? Table 2 Participant Demographic Characteristics and BIBCQ Scores Time 1 and Time 2 Participants 1 2 3 4 5 6 58 54 45 58 39 53 Annual family income $45,000 $95,000 $200,000 Prefer not to answer $120,000 $250,000 Race/ethnicity White White White Prefer not to answer White Black Marital status Married Divorced Married Divorced Married Single BMI 25 28 20 24 22 24 Number of Children 2 2 2 0 1 0 History of Breastfeeding Yes Yes Yes n/a Yes n/a Have friends or family with BR No No Yes Yes No Yes Bilateral, NippleSparing, Direct-toImplant BR Bilateral, NippleSparing, TwoStaged BR Bilateral, NippleSparing, Direct-toImplant BR Bilateral, Direct-toImplant BR Already had or plans for chemotherapy No Yes No No Yes No Already had or plans for radiation No No No Yes No No Age in years Type of BR Bilateral, Bilateral, NippleNippleSparing, Sparing, Direct-toDirect-toImplant BR Implant BR BREAST RECONSTRUCTION EFFECTS ON BODY IMAGE Complications from BR and treatment Provider of support during BR BIBCQ score Time 1 (total) 62 None None None Yes; antibiotics and implant removal Yes; antibiotics None Spouse Siblings Children Friends Medicalteam Spouse Parents Siblings Children Friends Supportgroup Medicalteam Spouse Parents Siblings Children Friends Medicalteam Siblings Friends Medicalteam Spouse Parents Siblings Children Friends Medicalteam Siblings Friends Medicalteam 110 94 79 80 120 67 BIBCQ score 94 126 79 143 125 65 Time 2 (total) Note. BIBCQ scores are a total of all six domains of body image (vulnerability, body stigma, limitations, body concerns, transparency, and arm concerns). BIBCQ = Body Image after Breast Cancer Questionnaire. Adapted from “Reliability and Validity of the Body Image after Breast Cancer Questionnaire,” by N. N. Baxter, P. J. Goodwin, R. S. Mcleod, R. Dion, G. Devins, and C. Bombardier, 2006, The Breast Journal, 12, p. 221-232.