Does a History of Childhood Sexual Abuse Affect Sexual Outcomes in Breast Cancer Survivors
http://www.100md.com
《临床肿瘤学》
the Department of Psychiatry and Biobehavioral Sciences, Schools of Medicine and Public Health, and Division of Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, University of California Los Angeles, Los Angeles, CA
ABSTRACT
METHODS: A total of 147 women in Los Angeles, CA, and Washington, DC, completed a structured interview that addressed sexual socialization and a history of sexual abuse. Trained female interviewers conducted the interviews. Descriptive statistics and regression analyses were used to examine the prevalence of CSA, and its potential impact on sexual health and functioning.
RESULTS: One in three women reported at least one CSA incident. Among women who had experienced CSA, 71% reported a single incident, and 22% reported a penetrative form of sexual contact. In multivariate regression analyses examining physical and psychological aspects of sexuality and body image, CSA was not a significant predictor of physical discomfort. However, a history of penetrative CSA was a significant predictor of psychological discomfort (P = .02).
CONCLUSION: The prevalence of CSA in this sample was similar to the general population literature on this topic. In this small sample, a past history of CSA did not contribute significantly to the physical discomforts associated with sexual intimacy after breast cancer; however, our findings suggest that a past history of penetrative CSA is associated with increased psychological discomfort, and may warrant additional examination in future research.
INTRODUCTION
As part of a larger program of research examining sexuality and intimacy in breast cancer survivors,15-17,19,20 we sought to perform a comprehensive evaluation of sexual functioning and its predictors, which included gathering data on a history of childhood sexual abuse (CSA) as a potential influence on a woman's current experience with breast cancer and its effect on her sexuality. This component was planned to allow for exploration of potential cumulative effects of interpersonal and medical trauma on adjustment to breast cancer. Research has begun to examine the impact of traumatic experiences on new stressors, and how they may influence adjustment.24 Studies have also examined the relationship between cumulative trauma in sexually abused children and psychological symptoms, suggesting a positive relationship between the number of types of trauma and psychological symptoms.25
CSA is defined as nonconsensual physical contact with a minor for the purposes of sexual gratification. 26 It is estimated that approximately 33% of women will have a CSA experience by the time they are 18 years old, with few ethnic differences in prevalence rates.27-29 Female survivors of CSA have reported greater interpersonal relationship difficulties than nonabused women, including a higher prevalence of sexual disorders, more sexual and relationship dissatisfaction, negative attitudes about sexuality, and high-risk sexual behaviors.30-33 Before initiating our research on sexuality and intimacy in breast cancer survivors, we had noted anecdotal reports that breast cancer surgery often evoked recurrence of symptoms related to CSA.34 Because so little was known about the potential role that a history of CSA might have on sexual functioning after breast cancer, we included questions about CSA within a detailed interview substudy that was designed to examine this and other sensitive issues among equal numbers of white and black breast cancer survivors.15,16 In this report we provide detailed information from the interviews on the relationship between CSA and current sexual functioning, which has not been reported previously. Although others have examined trauma history broadly as a predictor of psychological symptoms in breast cancer survivors,35 to the best of our knowledge, this is the first study to examine this topic in breast cancer survivors.
In this article we address the following questions. What is the frequency of CSA and what are the characteristics of CSA survivors in our sample of breast cancer survivors What are the types of abuse reported and what was the impact on early and later sexual behaviors What role, if any, does a history of CSA play in women's sexual functioning after breast cancer On the basis of available literature on CSA in general, we anticipated that more severe incidents of CSA would be associated with a variety of physical and psychological correlates of the sexual recovery of breast cancer survivors, and that an understanding of this problem could potentially aid in the development of specific hypotheses for future research.
METHODS
Invitations to participate in the study were mailed to each potential participant, and she was asked to respond by mail regarding her interest in participating. Those who responded affirmatively were contacted by telephone, screened for eligibility, and were given more detailed information about the study. If women were still interested in participating, they were mailed a questionnaire booklet and written consent form. Institutional review board approval to conduct this study was obtained at all institutions that participated in the study, and all participants provided written informed consent. Women who ultimately agreed to participate in the parent study were more likely to be married, white, and younger than nonparticipants.15
The in-person interview study was conducted in 1996 and was designed to examine sensitive issues that could not be assessed through a mailed survey questionnaire (including sexual socialization, dating, current sexual functioning, sexual history, overall sexual satisfaction, sexual self-pleasuring, history of childhood and adult sexual abuse, and contraceptive and pregnancy history).16 The original consent form of the parent study permitted recontact of patients for future studies. A separate consent form was used for the face-to-face interviews that indicated that the purpose of the interview was to obtain more detailed information about sexuality and intimacy after breast cancer. Only women in the parent study were eligible, and we further refined the eligibility to include only black and white women because of an interest in examining potential differences or similarities between these two groups of breast cancer survivors. There were no additional eligibility or exclusion criteria.16
The target sample for this substudy was 150 breast cancer survivors, among whom roughly half would be black. There were a total of 110 black women available in the parent study (53 in Los Angeles and 67 in Washington), and these women were all invited to participate in the study. In each city, recruitment and interviews were conducted until the target of 75 women was approached (34 in Los Angles and 38 in Washington). At each site, 50 white breast cancer survivors from the parent study were selected by stratified simple random sample, with strata based on partnership status and type of surgery. Overall, 65% of the black and 75% of the white women who were contacted participated, yielding a final sample of 147 survivors for the in-person interview study. The women who participated in the interview study had somewhat better health status and were slightly younger than those in the parent study sample.16
Interview Procedure
After a letter of invitation for the interview study, potential participants were contacted by telephone to determine whether they were interested in participating. The research was described to each woman, and if she was interested in participating, an interviewer was asked to contact the woman and schedule the interview at a time and place that was convenient (usually in the woman's home). The interviews were conducted by six trained female interviewers (three at each site) who completed a 2-day workshop that included lectures about breast cancer and its treatment, human sexuality, interview training, and coding procedures. Respondents and interviewers were ethnically matched to minimize reactivity to an interview involving personal and potentially socially undesirable information. The interviewer introduced herself and established rapport, obtained written consent for the taped interview (emphasizing voluntary participation and the freedom to withdraw from the study), and conducted the structured interview. The in-person interview included standard and study-specific instruments designed to assess various outcomes, including health-related quality of life, body image, sexuality and partnership, and physical symptoms related to surgery.16 If a woman had experienced CSA, an extensive interview process recorded information on the details of each of those episodes (see Measures). Each interview lasted approximately 90 minutes and the respondents were paid $30.00 for their participation. All procedures were approved by the institutional review boards at University of California Los Angeles, and Georgetown University.
Measures
Demographic and treatment characteristics. These data were obtained as part of the larger mailed survey, and included study site, age, type of breast cancer surgery, total family income, education, marital status, and ethnicity.
Coding of the type of child sexual abuse. In this study, CSA was defined as sexual body contact before age 18 years by someone of any age and relationship to the respondent.36 To separate women's child sexual victimization from exploratory sexual experimentation at or before age 12 and from consensual sexual activity with peers, two additional exclusion criteria were used. If the perpetrator was more than 5 years older than the respondent, the incident was considered CSA. If the age difference was less than 5 years, only contact that was not desired or involved coercion was included. In this study, sexual abuse was restricted to incidents involving body contact, including breast or genital fondling, frottage, digital penetration, and attempted or completed vaginal or oral intercourse.37
Women were asked screening questions about types of sexual abuse and asked a series of questions about each incident, including, for example: "Please describe what took place," "How old were you at the time," "Was the person(s) male or female," "What was that person's relationship to you," and so on. Responses regarding the relationship of the perpetrator to the victim were coded into intrafamilial (eg, father, uncle, brother) and extrafamilial (eg, neighbor, teacher, or family friend). Respondents were also asked to describe their emotional reaction to the incident(s), whether they told anyone, the result of disclosure (coded into positive effects, including feelings supported or protected by the person to whom the respondent disclosed; and negative effects [eg, the person was angry, did not believe, or blamed the respondent for the alleged incident]), reasons for not disclosing, how long the incident(s) lasted, and whether the incident was currently bothersome. The specific items used to assess a history of CSA and the introductory statement read to participants were adapted from the Wyatt Sexual History Questionnaire and are reported in detail elsewhere.36 The Wyatt Sexual History Questionnaire is a 478-item structured interview consisting of open-ended and closed-ended items, with high test-retest reliability on closed-ended items (r = 0.95).
The reported CSA incidents were examined to determine whether at least one incident included penetration. Categories for at least one penetrative incident (eg, digital, oral, anal, or vaginal contact) were labeled penetrative CSA. Incidents with no penetration (eg, fondling or frottage) were labeled as nonpenetrative sexual abuse. Final coding of the interviews (type and frequency of abuse, perpetrator, and so on) was completed by one member of the research team (T.B.L.) who was masked to details of the respondent's medical or demographic characteristics.
Sexual history and behaviors. We asked women about the following aspects of their sexual practices: frequency of cunnilingus (times per month), frequency of fellatio (times per month), age at when they first had consensual intercourse, age when they first used birth control, number of sexual partners, number of unplanned pregnancies, history of sexually transmitted disease (yes or no), and satisfaction with sexual relationships (very unsatisfying; somewhat unsatisfying; some satisfying, some not; somewhat satisfying; very satisfying).
Physical and psychological correlates of breast cancer experiences. Twelve items from the interview were selected to represent the physical and psychological impacts of breast cancer and its treatment on women's sexual functioning and body image. These questions were asked only of women who were sexually active. Four questions assessed each woman's status at the time of the interview, and were coded such that a higher score represented poorer functioning, less comfort, or less satisfaction. (1) How comfortable was she talking about breast cancer with people she felt close to (6-point Likert scale) (2) Did she feel she had a choice in the decision regarding type of surgery (yes or no) (3) How satisfied was she with the results of surgery (5-point Likert scale) (4) How comfortable was she looking at the breast or chest now (6-point Likert scale)
The remaining eight questions were asked of women with reference to two time periods: before breast cancer and recently. Before breast cancer referred to the 6 months before diagnosis, and recently referred to the 6 months before the interview. Response choices were in the form of 5- or 6-point Likert scales. A woman whose response for the recent period reflected poorer functioning than did her response for the before breast cancer period was coded as having a decline in that particular area, and the yes or no indicators of poorer functioning were used in our analyses. (1) How comfortable was she being in the nude (being without clothes) with a partner (2) How often did she feel too tired to have sex (3) How frequently did she feel tense or nervous after a sexual experience (4) How frequently did she notice dryness of the vagina during sexual intercourse (5) How often did she feel pain or discomfort during sexual intercourse (6) How often was she able to reach a climax (7) How frequently did she feel tense or nervous before a sexual experience (8) Overall, how satisfactory was her sexual relationship with her current or last sexual partner
Data Analysis
To pursue our first research question regarding the prevalence and characteristics of women with a history of CSA, we compared women who did and did not experience CSA on a number of demographic and treatment characteristics. These comparisons were conducted using {chi}2 or Fisher's exact tests.
For our second research question, we used simple means and frequencies to describe the types of abuse reported in our sample. A variety of standard statistical techniques were used to compare aspects of sexual history and behaviors between abused (CSA) and not-abused (non-CSA) women, given that some measures were continuous and some were categoric. We made comparisons with and without controlling for age in the analyses because age was found to differ in our sample between CSA and non-CSA women.
The third goal of our study was to examine whether a history of CSA affected sexual health and behavior in breast cancer survivors; however, given the small sample size, and the exploratory nature of the research, we were uncertain whether we would have definitive findings. In this analysis, which was limited to respondents who were sexually active in the 6 months before the interview, we performed a factor analysis, with input variables representing the physical and psychological correlates of the breast cancer experience described above. The factor analysis produced two measures, which we interpreted as representing physical and psychological distress. Ordinary least squares regression was performed with these factors as dependent variables. We further explored our regression results by examining logistic regression models of the individual components of one of our factors. The specification of predictors and models are described in more detail later in Results. Because our analyses were exploratory in nature, no adjustments have been made for multiple comparisons.
RESULTS
Characteristics and Circumstances of Sexual Abuse Incidents
Characteristics of sexual abuse incidents included the type of sexual contact, age of the victim at the time of abuse, description and location of the incident, and length of abuse (Table 2). Participants reported a range in the degree of physical violence used during an incident of sexual abuse. Although 82% reported no violence, 18% described incidents that involved interpersonal violence (ie, perpetrator used physical force or a weapon). Location and/or site of abuse incidents are detailed in Table 2; nearly all perpetrators were male.
Although the majority of women did not disclose the abuse incident to anyone, 39% told someone. Both positive and negative effects were reported as a result of disclosure. The main reasons for nondisclosure were self-blame, fear of a negative consequence, and the unavailability of a reliable person to tell. Participants were asked whether the experiences they reported were currently bothersome to them. One in three women reported that they continued to be affected by the abuse years later. Unfortunately, this closed-ended question did not allow respondents to elaborate on their perceptions of how they were currently affected by the incident(s). In addition, there were no ethnic differences in the prevalence and characteristics of abuse (P > .05).
Associations Among Type of Abuse and Sexual History and Sexual Behaviors
Women with and without CSA histories were compared on behaviors that have been associated with CSA (results not shown). No statistically significant differences were found between the groups for the following variables: age at first intercourse, age at first use of birth control, years from first intercourse to first use of birth control, frequency of cunnilingus, frequency of fellatio, number of unintended pregnancies, how satisfying sexual relationships have been, sexually transmitted disease history, and number of male partners (P > .05).
Correlates and Predictors of Women's Breast Cancer Experiences
A factor analysis was conducted using a subsample of sexually active women (n = 95). Input variables to the factor analysis included the 12 physical and psychological correlates of the breast cancer experience. Two factors emerged, cumulatively accounting for 42% of the variance. Factor 1 was loaded most heavily by five items that represented physical discomfort with sexual activity: feeling pain during sex more often since breast cancer, noticing dryness during sex more often, feeling tense before sex more often, experiencing increased sexual dissatisfaction, and reaching climax less often. Factor 2 was most strongly determined by six items representing psychological discomfort with sexual activity: feeling tense before sex more often since breast cancer, feeling less comfort in the nude with a partner, more often feeling too tired for sex, and experiencing low comfort looking at the breast or chest, low satisfaction with the results of surgery, and low comfort talking about breast cancer experiences. The item regarding whether the woman felt she had a choice in the surgery decision did not load strongly onto either factor.
Associations Among Type of Abuse and Correlates of Breast Cancer Experiences
Ordinary least squares regressions were conducted to ascertain whether there was a relationship between a history of CSA and the factors representing physical and psychological distress after breast cancer. CSA was measured by two variables indicating penetrative and nonpenetrative abuse, as opposed to no history of abuse. As listed in Table 1, victims of CSA were likely to be younger in our sample. In earlier research based on data from the larger sample of women in the main survey, we found that younger women were more likely to have received chemotherapy, to have had reconstructive surgery, and to have become menopausal as a result of treatment.15,17 Some of these variables were found to be predictive of sexual problems.17 Consequently, we controlled for them in our regressions. Because some of the variables used in constructing the factors represented change from before breast cancer to the time of the survey, we included a measure for the amount of time that elapsed from diagnosis to survey. We also included ethnicity.
As listed in Table 3, CSA was not a statistically significant predictor of physical distress after breast cancer. In fact, none of the predictors we included in that model were significant, and the overall regression model was not significant (P = .35). However, a history of penetrative abuse was associated with greater psychological distress. The distress factors we used had a mean value of zero and a standard deviation (SD) of 1. The estimated effect of a history of penetrative abuse, therefore, was to increase the measure of psychological distress by 1 SD ( = .99; P = .02). As with the physical distress regression, the overall F test of the psychological distress regression was not statistically significant (P = .17). However, because of a lack of power due to the small sample size (fewer than 100 women) coupled with the size of the estimated impact (women with penetrative abuse 1 SD higher than women with no CSA), we believe these results cannot be ignored.
We further explored the impact of penetrative abuse on psychological distress by examining its effect on the variables that were most strongly associated with that factor (the six items with high loadings on the psychological discomfort factor described previously). These variables were either dichotomous measures or Likert scales with responses heavily weighted toward one extreme (eg, 84% indicating they were "very comfortable" talking about their breast cancer experience). The Likert-scaled variables were dichotomized, and separate logistic regressions predicting the six correlates of psychological discomfort were run, using the same independent variables shown in Table 3. Penetrative abuse was significantly associated with discomfort looking at the breast or chest area (logit coefficient, 1.83; P = .03) and with becoming more uncomfortable being nude with a partner after the cancer diagnosis (logit coefficient, 3.02; P = .004).
DISCUSSION
Our finding that approximately one in three breast cancer survivors reported a history of CSA before the age of 18 is consistent with other retrospective studies.27,29,36,38 Despite similarities in prevalence rates across studies, the circumstances of abuse reported here differ from other reports. The alleged abuse incidents represented in this study were less likely to involve vaginal penetration by perpetrators than those represented in more recent reports.27 This finding provides some support for the contention that the prevalence of severe CSA has increased over time. Indeed, a statistically significant increase in severe abuse incidents between 1984 and 1994 has been documented.27 No ethnic differences in the circumstances of abuse incidents were noted, suggesting that these circumstances may not be differentially affected by ethnic group classification.
In this sample, we found no differences between women with and without CSA histories in behaviors that have been documented by researchers as long-term effects of CSA, such as frequency of oral sex, delayed use of birth control, history of unintended pregnancies, and number of male partners. One possible explanation for the lack of differences found between CSA and non-CSA survivors in these areas is that the majority of women who reported CSA experienced moderate (eg, fondling, frottage), rather than severe abuse involving penetration. Associations found between CSA and long-term effects are typically stronger for more severe abuse.39 Furthermore, the women in our sample generally received family support as a result of abuse having occurred: 60% of women reporting CSA in this study sample felt supported by family or significant others when they disclosed incidents to them. This may have helped assuage negative long-term effects associated with abuse incidents.40
An interesting finding from this study was that women who experienced penetrative abuse incidents were likely to report more negative psychological correlates of breast cancer experiences, including less comfort looking at their breasts or chest after surgery and less comfort being in the nude with their partner since breast cancer. Although penetrative abuse incidents were infrequent among this sample of women, these incidents appear to have had an impact on the satisfaction and comfort that these women felt about their bodies after breast cancer. It seems possible that the trauma of breast cancer may further distort the negative self-perceptions that CSA survivors often report.41 However, this finding needs to be substantiated by additional research. Finkelhor and Browne42 describe the long-term effects of stigmatization, betrayal, and powerlessness that CSA survivors sometimes encounter, and these may possibly be magnified or recalled as part of the breast cancer treatment experience. One way in which future research may improve on this study would be in the sophistication of the measures of psychological distress. Many of the variables used in the construction of our outcome factors were based on crude comparisons of scale values from before breast cancer to the time of the interview; future studies could be based on improved variables better designed to capture the aspects of sexual health that are affected by trauma.
The prevalence rate of CSA obtained by this investigation is consistent with rates obtained by other retrospective investigations.36 However, this study is based on retrospective, unsubstantiated accounts of CSA in an adult female population. These rates are subject to memory performance error, and most likely underestimate the true prevalence of CSA.29 Furthermore, this study involved only two urban geographic areas (Los Angeles and Washington), limiting the generalizability of findings to other areas of the United States.27 However, the rates of CSA are consistent with studies in community samples.27 It is clear that these hypothesis-generating findings need replication in future studies, but at a minimum health professionals who work with breast cancer patients should include a sexual history and assessment of potential abuse in their evaluation of their patients to comprehensively evaluate the physical and psychological distress that patients may be experiencing.
Finally, we view the results of this study as hypothesis generating because there are limited data on CSA in breast cancer survivors,34 and the number of women reporting a history of CSA in this study was small. Although CSA is often included within broader trauma history questionnaires,43 we were unable to identify any previous research that systematically explored this topic in breast cancer survivors. In a recent study of breast cancer survivors, the breast cancer itself was associated with relatively low levels of post-traumatic stress disorder (PTSD; approximately 5% for any time postcancer up to 20 months); however, a history of sexual assault was associated with much greater risk of PTSD in this same sample (22%).43 In additional analysis, Green et al35 found that a reported history of a traumatic event exposure played an important and consistent role in predicting non-PTSD psychological outcomes in these breast cancer survivors.
Although our findings regarding a history of penetrative abuse incidents are based on a small sample of women (n = 11), they suggest that it might not be breast cancer surgery or the loss of a breast alone that evokes a particular symptom such as body image problems.6,20 Previous experiences with CSA may also affect body comfort, and past negative feelings related to CSA may be renewed by breast cancer and its treatment. Women's subjective experiences need to be evaluated for their individual and cumulative effects on their sexuality, comfort with their bodies, and psychosocial well-being. More research is needed to understand the differential effects of these experiences on breast cancer survivors' recovery. Optimal treatment for breast cancer survivors may require a more comprehensive understanding of past experiences that can complicate women's adjustment to current medical treatment.
Authors' Disclosures of Potential Conflicts of Interest
Acknowledgment
We thank Donald Guthrie, PhD, for earlier assistance in data analysis.
NOTES
Supported by grant No. R01 CA 63028 from the National Cancer Institute, Bethesda, MD. P.A.G. is also supported in part by an American Cancer Society Clinical Research Professorship.
Authors' disclosures of potential conflicts of interest are found at the end of this article.
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ABSTRACT
METHODS: A total of 147 women in Los Angeles, CA, and Washington, DC, completed a structured interview that addressed sexual socialization and a history of sexual abuse. Trained female interviewers conducted the interviews. Descriptive statistics and regression analyses were used to examine the prevalence of CSA, and its potential impact on sexual health and functioning.
RESULTS: One in three women reported at least one CSA incident. Among women who had experienced CSA, 71% reported a single incident, and 22% reported a penetrative form of sexual contact. In multivariate regression analyses examining physical and psychological aspects of sexuality and body image, CSA was not a significant predictor of physical discomfort. However, a history of penetrative CSA was a significant predictor of psychological discomfort (P = .02).
CONCLUSION: The prevalence of CSA in this sample was similar to the general population literature on this topic. In this small sample, a past history of CSA did not contribute significantly to the physical discomforts associated with sexual intimacy after breast cancer; however, our findings suggest that a past history of penetrative CSA is associated with increased psychological discomfort, and may warrant additional examination in future research.
INTRODUCTION
As part of a larger program of research examining sexuality and intimacy in breast cancer survivors,15-17,19,20 we sought to perform a comprehensive evaluation of sexual functioning and its predictors, which included gathering data on a history of childhood sexual abuse (CSA) as a potential influence on a woman's current experience with breast cancer and its effect on her sexuality. This component was planned to allow for exploration of potential cumulative effects of interpersonal and medical trauma on adjustment to breast cancer. Research has begun to examine the impact of traumatic experiences on new stressors, and how they may influence adjustment.24 Studies have also examined the relationship between cumulative trauma in sexually abused children and psychological symptoms, suggesting a positive relationship between the number of types of trauma and psychological symptoms.25
CSA is defined as nonconsensual physical contact with a minor for the purposes of sexual gratification. 26 It is estimated that approximately 33% of women will have a CSA experience by the time they are 18 years old, with few ethnic differences in prevalence rates.27-29 Female survivors of CSA have reported greater interpersonal relationship difficulties than nonabused women, including a higher prevalence of sexual disorders, more sexual and relationship dissatisfaction, negative attitudes about sexuality, and high-risk sexual behaviors.30-33 Before initiating our research on sexuality and intimacy in breast cancer survivors, we had noted anecdotal reports that breast cancer surgery often evoked recurrence of symptoms related to CSA.34 Because so little was known about the potential role that a history of CSA might have on sexual functioning after breast cancer, we included questions about CSA within a detailed interview substudy that was designed to examine this and other sensitive issues among equal numbers of white and black breast cancer survivors.15,16 In this report we provide detailed information from the interviews on the relationship between CSA and current sexual functioning, which has not been reported previously. Although others have examined trauma history broadly as a predictor of psychological symptoms in breast cancer survivors,35 to the best of our knowledge, this is the first study to examine this topic in breast cancer survivors.
In this article we address the following questions. What is the frequency of CSA and what are the characteristics of CSA survivors in our sample of breast cancer survivors What are the types of abuse reported and what was the impact on early and later sexual behaviors What role, if any, does a history of CSA play in women's sexual functioning after breast cancer On the basis of available literature on CSA in general, we anticipated that more severe incidents of CSA would be associated with a variety of physical and psychological correlates of the sexual recovery of breast cancer survivors, and that an understanding of this problem could potentially aid in the development of specific hypotheses for future research.
METHODS
Invitations to participate in the study were mailed to each potential participant, and she was asked to respond by mail regarding her interest in participating. Those who responded affirmatively were contacted by telephone, screened for eligibility, and were given more detailed information about the study. If women were still interested in participating, they were mailed a questionnaire booklet and written consent form. Institutional review board approval to conduct this study was obtained at all institutions that participated in the study, and all participants provided written informed consent. Women who ultimately agreed to participate in the parent study were more likely to be married, white, and younger than nonparticipants.15
The in-person interview study was conducted in 1996 and was designed to examine sensitive issues that could not be assessed through a mailed survey questionnaire (including sexual socialization, dating, current sexual functioning, sexual history, overall sexual satisfaction, sexual self-pleasuring, history of childhood and adult sexual abuse, and contraceptive and pregnancy history).16 The original consent form of the parent study permitted recontact of patients for future studies. A separate consent form was used for the face-to-face interviews that indicated that the purpose of the interview was to obtain more detailed information about sexuality and intimacy after breast cancer. Only women in the parent study were eligible, and we further refined the eligibility to include only black and white women because of an interest in examining potential differences or similarities between these two groups of breast cancer survivors. There were no additional eligibility or exclusion criteria.16
The target sample for this substudy was 150 breast cancer survivors, among whom roughly half would be black. There were a total of 110 black women available in the parent study (53 in Los Angeles and 67 in Washington), and these women were all invited to participate in the study. In each city, recruitment and interviews were conducted until the target of 75 women was approached (34 in Los Angles and 38 in Washington). At each site, 50 white breast cancer survivors from the parent study were selected by stratified simple random sample, with strata based on partnership status and type of surgery. Overall, 65% of the black and 75% of the white women who were contacted participated, yielding a final sample of 147 survivors for the in-person interview study. The women who participated in the interview study had somewhat better health status and were slightly younger than those in the parent study sample.16
Interview Procedure
After a letter of invitation for the interview study, potential participants were contacted by telephone to determine whether they were interested in participating. The research was described to each woman, and if she was interested in participating, an interviewer was asked to contact the woman and schedule the interview at a time and place that was convenient (usually in the woman's home). The interviews were conducted by six trained female interviewers (three at each site) who completed a 2-day workshop that included lectures about breast cancer and its treatment, human sexuality, interview training, and coding procedures. Respondents and interviewers were ethnically matched to minimize reactivity to an interview involving personal and potentially socially undesirable information. The interviewer introduced herself and established rapport, obtained written consent for the taped interview (emphasizing voluntary participation and the freedom to withdraw from the study), and conducted the structured interview. The in-person interview included standard and study-specific instruments designed to assess various outcomes, including health-related quality of life, body image, sexuality and partnership, and physical symptoms related to surgery.16 If a woman had experienced CSA, an extensive interview process recorded information on the details of each of those episodes (see Measures). Each interview lasted approximately 90 minutes and the respondents were paid $30.00 for their participation. All procedures were approved by the institutional review boards at University of California Los Angeles, and Georgetown University.
Measures
Demographic and treatment characteristics. These data were obtained as part of the larger mailed survey, and included study site, age, type of breast cancer surgery, total family income, education, marital status, and ethnicity.
Coding of the type of child sexual abuse. In this study, CSA was defined as sexual body contact before age 18 years by someone of any age and relationship to the respondent.36 To separate women's child sexual victimization from exploratory sexual experimentation at or before age 12 and from consensual sexual activity with peers, two additional exclusion criteria were used. If the perpetrator was more than 5 years older than the respondent, the incident was considered CSA. If the age difference was less than 5 years, only contact that was not desired or involved coercion was included. In this study, sexual abuse was restricted to incidents involving body contact, including breast or genital fondling, frottage, digital penetration, and attempted or completed vaginal or oral intercourse.37
Women were asked screening questions about types of sexual abuse and asked a series of questions about each incident, including, for example: "Please describe what took place," "How old were you at the time," "Was the person(s) male or female," "What was that person's relationship to you," and so on. Responses regarding the relationship of the perpetrator to the victim were coded into intrafamilial (eg, father, uncle, brother) and extrafamilial (eg, neighbor, teacher, or family friend). Respondents were also asked to describe their emotional reaction to the incident(s), whether they told anyone, the result of disclosure (coded into positive effects, including feelings supported or protected by the person to whom the respondent disclosed; and negative effects [eg, the person was angry, did not believe, or blamed the respondent for the alleged incident]), reasons for not disclosing, how long the incident(s) lasted, and whether the incident was currently bothersome. The specific items used to assess a history of CSA and the introductory statement read to participants were adapted from the Wyatt Sexual History Questionnaire and are reported in detail elsewhere.36 The Wyatt Sexual History Questionnaire is a 478-item structured interview consisting of open-ended and closed-ended items, with high test-retest reliability on closed-ended items (r = 0.95).
The reported CSA incidents were examined to determine whether at least one incident included penetration. Categories for at least one penetrative incident (eg, digital, oral, anal, or vaginal contact) were labeled penetrative CSA. Incidents with no penetration (eg, fondling or frottage) were labeled as nonpenetrative sexual abuse. Final coding of the interviews (type and frequency of abuse, perpetrator, and so on) was completed by one member of the research team (T.B.L.) who was masked to details of the respondent's medical or demographic characteristics.
Sexual history and behaviors. We asked women about the following aspects of their sexual practices: frequency of cunnilingus (times per month), frequency of fellatio (times per month), age at when they first had consensual intercourse, age when they first used birth control, number of sexual partners, number of unplanned pregnancies, history of sexually transmitted disease (yes or no), and satisfaction with sexual relationships (very unsatisfying; somewhat unsatisfying; some satisfying, some not; somewhat satisfying; very satisfying).
Physical and psychological correlates of breast cancer experiences. Twelve items from the interview were selected to represent the physical and psychological impacts of breast cancer and its treatment on women's sexual functioning and body image. These questions were asked only of women who were sexually active. Four questions assessed each woman's status at the time of the interview, and were coded such that a higher score represented poorer functioning, less comfort, or less satisfaction. (1) How comfortable was she talking about breast cancer with people she felt close to (6-point Likert scale) (2) Did she feel she had a choice in the decision regarding type of surgery (yes or no) (3) How satisfied was she with the results of surgery (5-point Likert scale) (4) How comfortable was she looking at the breast or chest now (6-point Likert scale)
The remaining eight questions were asked of women with reference to two time periods: before breast cancer and recently. Before breast cancer referred to the 6 months before diagnosis, and recently referred to the 6 months before the interview. Response choices were in the form of 5- or 6-point Likert scales. A woman whose response for the recent period reflected poorer functioning than did her response for the before breast cancer period was coded as having a decline in that particular area, and the yes or no indicators of poorer functioning were used in our analyses. (1) How comfortable was she being in the nude (being without clothes) with a partner (2) How often did she feel too tired to have sex (3) How frequently did she feel tense or nervous after a sexual experience (4) How frequently did she notice dryness of the vagina during sexual intercourse (5) How often did she feel pain or discomfort during sexual intercourse (6) How often was she able to reach a climax (7) How frequently did she feel tense or nervous before a sexual experience (8) Overall, how satisfactory was her sexual relationship with her current or last sexual partner
Data Analysis
To pursue our first research question regarding the prevalence and characteristics of women with a history of CSA, we compared women who did and did not experience CSA on a number of demographic and treatment characteristics. These comparisons were conducted using {chi}2 or Fisher's exact tests.
For our second research question, we used simple means and frequencies to describe the types of abuse reported in our sample. A variety of standard statistical techniques were used to compare aspects of sexual history and behaviors between abused (CSA) and not-abused (non-CSA) women, given that some measures were continuous and some were categoric. We made comparisons with and without controlling for age in the analyses because age was found to differ in our sample between CSA and non-CSA women.
The third goal of our study was to examine whether a history of CSA affected sexual health and behavior in breast cancer survivors; however, given the small sample size, and the exploratory nature of the research, we were uncertain whether we would have definitive findings. In this analysis, which was limited to respondents who were sexually active in the 6 months before the interview, we performed a factor analysis, with input variables representing the physical and psychological correlates of the breast cancer experience described above. The factor analysis produced two measures, which we interpreted as representing physical and psychological distress. Ordinary least squares regression was performed with these factors as dependent variables. We further explored our regression results by examining logistic regression models of the individual components of one of our factors. The specification of predictors and models are described in more detail later in Results. Because our analyses were exploratory in nature, no adjustments have been made for multiple comparisons.
RESULTS
Characteristics and Circumstances of Sexual Abuse Incidents
Characteristics of sexual abuse incidents included the type of sexual contact, age of the victim at the time of abuse, description and location of the incident, and length of abuse (Table 2). Participants reported a range in the degree of physical violence used during an incident of sexual abuse. Although 82% reported no violence, 18% described incidents that involved interpersonal violence (ie, perpetrator used physical force or a weapon). Location and/or site of abuse incidents are detailed in Table 2; nearly all perpetrators were male.
Although the majority of women did not disclose the abuse incident to anyone, 39% told someone. Both positive and negative effects were reported as a result of disclosure. The main reasons for nondisclosure were self-blame, fear of a negative consequence, and the unavailability of a reliable person to tell. Participants were asked whether the experiences they reported were currently bothersome to them. One in three women reported that they continued to be affected by the abuse years later. Unfortunately, this closed-ended question did not allow respondents to elaborate on their perceptions of how they were currently affected by the incident(s). In addition, there were no ethnic differences in the prevalence and characteristics of abuse (P > .05).
Associations Among Type of Abuse and Sexual History and Sexual Behaviors
Women with and without CSA histories were compared on behaviors that have been associated with CSA (results not shown). No statistically significant differences were found between the groups for the following variables: age at first intercourse, age at first use of birth control, years from first intercourse to first use of birth control, frequency of cunnilingus, frequency of fellatio, number of unintended pregnancies, how satisfying sexual relationships have been, sexually transmitted disease history, and number of male partners (P > .05).
Correlates and Predictors of Women's Breast Cancer Experiences
A factor analysis was conducted using a subsample of sexually active women (n = 95). Input variables to the factor analysis included the 12 physical and psychological correlates of the breast cancer experience. Two factors emerged, cumulatively accounting for 42% of the variance. Factor 1 was loaded most heavily by five items that represented physical discomfort with sexual activity: feeling pain during sex more often since breast cancer, noticing dryness during sex more often, feeling tense before sex more often, experiencing increased sexual dissatisfaction, and reaching climax less often. Factor 2 was most strongly determined by six items representing psychological discomfort with sexual activity: feeling tense before sex more often since breast cancer, feeling less comfort in the nude with a partner, more often feeling too tired for sex, and experiencing low comfort looking at the breast or chest, low satisfaction with the results of surgery, and low comfort talking about breast cancer experiences. The item regarding whether the woman felt she had a choice in the surgery decision did not load strongly onto either factor.
Associations Among Type of Abuse and Correlates of Breast Cancer Experiences
Ordinary least squares regressions were conducted to ascertain whether there was a relationship between a history of CSA and the factors representing physical and psychological distress after breast cancer. CSA was measured by two variables indicating penetrative and nonpenetrative abuse, as opposed to no history of abuse. As listed in Table 1, victims of CSA were likely to be younger in our sample. In earlier research based on data from the larger sample of women in the main survey, we found that younger women were more likely to have received chemotherapy, to have had reconstructive surgery, and to have become menopausal as a result of treatment.15,17 Some of these variables were found to be predictive of sexual problems.17 Consequently, we controlled for them in our regressions. Because some of the variables used in constructing the factors represented change from before breast cancer to the time of the survey, we included a measure for the amount of time that elapsed from diagnosis to survey. We also included ethnicity.
As listed in Table 3, CSA was not a statistically significant predictor of physical distress after breast cancer. In fact, none of the predictors we included in that model were significant, and the overall regression model was not significant (P = .35). However, a history of penetrative abuse was associated with greater psychological distress. The distress factors we used had a mean value of zero and a standard deviation (SD) of 1. The estimated effect of a history of penetrative abuse, therefore, was to increase the measure of psychological distress by 1 SD ( = .99; P = .02). As with the physical distress regression, the overall F test of the psychological distress regression was not statistically significant (P = .17). However, because of a lack of power due to the small sample size (fewer than 100 women) coupled with the size of the estimated impact (women with penetrative abuse 1 SD higher than women with no CSA), we believe these results cannot be ignored.
We further explored the impact of penetrative abuse on psychological distress by examining its effect on the variables that were most strongly associated with that factor (the six items with high loadings on the psychological discomfort factor described previously). These variables were either dichotomous measures or Likert scales with responses heavily weighted toward one extreme (eg, 84% indicating they were "very comfortable" talking about their breast cancer experience). The Likert-scaled variables were dichotomized, and separate logistic regressions predicting the six correlates of psychological discomfort were run, using the same independent variables shown in Table 3. Penetrative abuse was significantly associated with discomfort looking at the breast or chest area (logit coefficient, 1.83; P = .03) and with becoming more uncomfortable being nude with a partner after the cancer diagnosis (logit coefficient, 3.02; P = .004).
DISCUSSION
Our finding that approximately one in three breast cancer survivors reported a history of CSA before the age of 18 is consistent with other retrospective studies.27,29,36,38 Despite similarities in prevalence rates across studies, the circumstances of abuse reported here differ from other reports. The alleged abuse incidents represented in this study were less likely to involve vaginal penetration by perpetrators than those represented in more recent reports.27 This finding provides some support for the contention that the prevalence of severe CSA has increased over time. Indeed, a statistically significant increase in severe abuse incidents between 1984 and 1994 has been documented.27 No ethnic differences in the circumstances of abuse incidents were noted, suggesting that these circumstances may not be differentially affected by ethnic group classification.
In this sample, we found no differences between women with and without CSA histories in behaviors that have been documented by researchers as long-term effects of CSA, such as frequency of oral sex, delayed use of birth control, history of unintended pregnancies, and number of male partners. One possible explanation for the lack of differences found between CSA and non-CSA survivors in these areas is that the majority of women who reported CSA experienced moderate (eg, fondling, frottage), rather than severe abuse involving penetration. Associations found between CSA and long-term effects are typically stronger for more severe abuse.39 Furthermore, the women in our sample generally received family support as a result of abuse having occurred: 60% of women reporting CSA in this study sample felt supported by family or significant others when they disclosed incidents to them. This may have helped assuage negative long-term effects associated with abuse incidents.40
An interesting finding from this study was that women who experienced penetrative abuse incidents were likely to report more negative psychological correlates of breast cancer experiences, including less comfort looking at their breasts or chest after surgery and less comfort being in the nude with their partner since breast cancer. Although penetrative abuse incidents were infrequent among this sample of women, these incidents appear to have had an impact on the satisfaction and comfort that these women felt about their bodies after breast cancer. It seems possible that the trauma of breast cancer may further distort the negative self-perceptions that CSA survivors often report.41 However, this finding needs to be substantiated by additional research. Finkelhor and Browne42 describe the long-term effects of stigmatization, betrayal, and powerlessness that CSA survivors sometimes encounter, and these may possibly be magnified or recalled as part of the breast cancer treatment experience. One way in which future research may improve on this study would be in the sophistication of the measures of psychological distress. Many of the variables used in the construction of our outcome factors were based on crude comparisons of scale values from before breast cancer to the time of the interview; future studies could be based on improved variables better designed to capture the aspects of sexual health that are affected by trauma.
The prevalence rate of CSA obtained by this investigation is consistent with rates obtained by other retrospective investigations.36 However, this study is based on retrospective, unsubstantiated accounts of CSA in an adult female population. These rates are subject to memory performance error, and most likely underestimate the true prevalence of CSA.29 Furthermore, this study involved only two urban geographic areas (Los Angeles and Washington), limiting the generalizability of findings to other areas of the United States.27 However, the rates of CSA are consistent with studies in community samples.27 It is clear that these hypothesis-generating findings need replication in future studies, but at a minimum health professionals who work with breast cancer patients should include a sexual history and assessment of potential abuse in their evaluation of their patients to comprehensively evaluate the physical and psychological distress that patients may be experiencing.
Finally, we view the results of this study as hypothesis generating because there are limited data on CSA in breast cancer survivors,34 and the number of women reporting a history of CSA in this study was small. Although CSA is often included within broader trauma history questionnaires,43 we were unable to identify any previous research that systematically explored this topic in breast cancer survivors. In a recent study of breast cancer survivors, the breast cancer itself was associated with relatively low levels of post-traumatic stress disorder (PTSD; approximately 5% for any time postcancer up to 20 months); however, a history of sexual assault was associated with much greater risk of PTSD in this same sample (22%).43 In additional analysis, Green et al35 found that a reported history of a traumatic event exposure played an important and consistent role in predicting non-PTSD psychological outcomes in these breast cancer survivors.
Although our findings regarding a history of penetrative abuse incidents are based on a small sample of women (n = 11), they suggest that it might not be breast cancer surgery or the loss of a breast alone that evokes a particular symptom such as body image problems.6,20 Previous experiences with CSA may also affect body comfort, and past negative feelings related to CSA may be renewed by breast cancer and its treatment. Women's subjective experiences need to be evaluated for their individual and cumulative effects on their sexuality, comfort with their bodies, and psychosocial well-being. More research is needed to understand the differential effects of these experiences on breast cancer survivors' recovery. Optimal treatment for breast cancer survivors may require a more comprehensive understanding of past experiences that can complicate women's adjustment to current medical treatment.
Authors' Disclosures of Potential Conflicts of Interest
Acknowledgment
We thank Donald Guthrie, PhD, for earlier assistance in data analysis.
NOTES
Supported by grant No. R01 CA 63028 from the National Cancer Institute, Bethesda, MD. P.A.G. is also supported in part by an American Cancer Society Clinical Research Professorship.
Authors' disclosures of potential conflicts of interest are found at the end of this article.
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