Reactions to Research Participation in Victims of Childhood Sexual Abuse A Comparison of Court-Substantiated and Retrospectively Self-Reported Cases Author(s): Christina Massey and Cathy Spatz Widom Source: Journal of Empirical Research on Human Research Ethics: An International Journal, Vol. 8, No. 4 (October 2013), pp. 77-92 Published by: Sage Publications, Inc. Stable URL: http://www.jstor.org/stable/10.1525/jer.2013.8.4.77 Accessed: 23-09-2016 17:19 UTC JSTOR is a not-for-profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive. We use information technology and tools to increase productivity and facilitate new forms of scholarship. For more information about JSTOR, please contact [email protected].
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Reactions to Research Participation
77
Reactions to Research Participation in Victims of Childhood Sexual Abuse: A Comparison of Court-Substantiated and Retrospectively Self-Reported Cases Christina Massey and Cathy Spatz Widom John Jay College of Criminal Justice and the Graduate Center, CUNY ABSTRACT: we examined whether adults with a documented or self-reported history of childhood sexual abuse (CSA) report more emotional reactions and negative responses to research participation and whether psychiatric symptoms play a moderating role in their reactions. Using a prospective cohort design, individuals with documented histories of CSA and nonabused matched controls were followed up and interviewed in adulthood (n = 460). Reactions to research participation were measured with a brief questionnaire. Concurrent symptoms of depression, anxiety, and PTSD were assessed via standardized measures. Results showed that those with a history of CSA, documented or selfreported, experienced similar reactions compared to controls. Psychiatric symptoms predicted stronger emotional reactions and more negative responses, but also greater personal benefit, regardless of CSA history. KEY WORDS: childhood sexual abuse, reactions to research participation, vulnerable populations, psychiatric symptoms Received: March 18, 2013; revised: September 2, 2013
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tandard ethical guidelines for research with human subjects dictate that participants should be treated with respect and protected from all foreseeable harm (Belmont Report; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978). To date, there is a wellestablished body of literature that provides empirical evidence of the extent to which research participation is experienced as negative or positive across several different types of paradigms. In studies involving reactions to participation in trauma research specifically, this literature has led to extensive discussions regarding various ethical concerns in trauma research and relevant procedures that can be considered by researchers when determining how to minimize harm (e.g., Becker-Blease & Freyd, 2006;
Fontes, 2004). However, even though existing evidence suggests that trauma research is generally well-tolerated across samples, settings, and paradigms (Becker-Blease & Freyd, 2006; Newman, Risch, & Kassam-Adams, 2006), the role of various factors and characteristics other than abuse history that influence whether a person experiences negative reactions is not well understood (Newman & Kaloupek, 2009; Newman et al., 2006). From an ethical standpoint, when vulnerable populations and sensitive research topics are involved, as in the case of studies of trauma and victimization, it is particularly important to know what factors may be associated with negative reactions to research participation to further minimize potential harm. In the studies that have examined reactions to research participation, reactions are often measured in terms of cost-benefit ratios, where the self-reported positive reactions and perceived benefit of the potential research findings have been found to balance or outweigh any unanticipated distress (e.g., DePrince & Chu, 2008; Edwards et al., 2009; Griffin et al., 2003; Kassam-Adams & Newman, 2005; Newman, Walker, & Gefland, 1999). One such large-scale study involving trauma research that illustrates this type of examination (Widom & Czaja, 2005) concluded that adults with court-substantiated histories of child abuse and neglect were more likely to report negative reactions; however, these individuals were also more likely to rate participation as significantly more meaningful than participants without court-substantiated histories of childhood maltreatment. Similarly, one recent study examining reactions among undergraduate research participants to surveys focusing on trauma and sex found that the participants were more likely to report negative reactions compared to participants who completed other types of surveys, but they were also more likely to consider the research meaningful and, thus, positive. Furthermore, the level of stress experienced by the participants who completed the trauma and sex surveys was consistently rated as less significant than common life stressors, such as getting a speeding ticket, performing poorly on a test, or watching a horror film (Yeater et al., 2012). These results are consistent with previous studies that have examined the use of trauma-based questionnaires and
Journal of Empirical Research on Human Research Ethics, Vol. 8, No. 4, pp. 77–92. print issn 1556-2646, online issn 1556-2654. © 2013 by joan sieber. all rights reserved. please direct all requests for permissions to photocopy or reproduce article content through the university of california press’s rights and permissions website, http://www.ucpressjournals.com/reprintinfo.asp. DOI: 10.1525/jer.2013.8.4.77
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C. Massey, C. Widom
interviews (e.g., Cromer et al., 2006; Newman & Kaloupek, 2009). In addition, some evidence suggests that individuals who report more psychiatric symptoms experience greater levels of distress while participating in research (e.g., Carlson et al., 2003; Johnson & Benight, 2003; Ruzek & Zatzick, 2000; Newman & Kaloupek, 2009; Newman et al., 2006; Walker et al., 1997; Widom & Czaja, 2005). Most studies that have included psychiatric symptoms have looked at symptoms of posttraumatic stress disorder as it is the disorder most closely associated with trauma experiences, but these studies have yielded fairly inconsistent results overall (Newman & Kaloupek, 2009). While fewer studies focus on symptoms of other psychiatric disorders, there is evidence that strong emotional reactions are also related to reports of depression and anxiety, regardless of abuse or neglect status (Widom & Czaja, 2005). Concern about negative reactions to research participation and psychiatric symptoms may be particularly salient in the case of childhood sexual abuse because research has shown that individuals who report histories of childhood sexual abuse also report high rates of psychiatric symptoms (e.g., Gilbert et al., 2009; Green et al., 2010; McLaughlin et al., 2010; Molnar, Buka, & Kessler, 2001). Some studies report little improvement over time in sexually abused individuals who develop such symptoms (e.g., Calam et al., 1998; Gilbert et al., 2009), whereas other longitudinal studies suggest that symptoms begin improving within months after the abuse has occurred (Gomes-Schwartz et al., 1990). Furthermore, the majority of studies find that a certain proportion of abused individuals are asymptomatic and well adjusted (Finkelhor, 1990; Finkelhor & Browne, 1985; Rind, Tromovitch, & Bauserman, 1998). This apparent inconsistency indicates that the impact of the experience of childhood sexual abuse varies widely and that not everyone develops symptoms of emotional or behavioral disturbances following childhood victimization. Given this variability in outcomes and the relationship between maladaptive psychiatric symptoms and negative reactions to research participation, it seems particularly important to examine whether the presence of psychiatric symptoms plays a moderating role in reactions to research participation experienced by individuals with a history of childhood sexual abuse. Methodological Concerns
While existing evidence suggests that participation in trauma research is well tolerated and that the experience is perceived as meaningful despite intense emotions, the studies that have focused specifically on childhood sexual abuse have used different operational definitions or criteria to identify the victims. The vast majority of
studies investigating reactions to participation in sensitive research have used self-reports of prior victimization (e.g., Carlson et al., 2003; DePrince & Chu, 2008; Draucker, 1999; Griffin et al., 2003). As a result of this almost exclusive reliance on this operational definition in the literature (that is, retrospective self-reports), it is unclear whether these results will generalize to studies that involve documented, court-substantiated cases of childhood sexual abuse. It is widely recognized that childhood sexual abuse is difficult to detect and that victims often wait years, even decades, before reporting the abuse (e.g., John Jay College, 2004; Smith et al., 2000), resulting in numerous cases of childhood maltreatment that lack official or documented proof. Because of these concerns, using retrospective self-reports to identify victims of CSA seems warranted. However, it is important to determine whether participation in research is well tolerated among those with court-substantiated cases as well, given that trauma research is likely to include at least some individuals with such documented histories. Research using court-substantiated cases to define a history of childhood maltreatment is admittedly rare, but participants who self-report may have been involved in legal proceedings as children, and therefore, the self-reports of victimization may have an accompanying court substantiation. On the other hand, it is not unusual to find individuals with official, documented histories of sexual abuse, who, as adults, do not report such histories (e.g., Widom & Morris, 1997). These individuals may actually be enrolled in trauma studies as control participants. From a methodological standpoint, the possibility that the control group may involve victims of childhood sexual abuse threatens the internal validity of research findings regarding reactions to research participation. Given this, it seems important to examine reactions to research participation in a sample that is more representative of samples that are commonly used in trauma research, i.e., one involving both courtsubstantiated and self-reported cases of childhood sexual abuse. Many trauma researchers also posit that it may not be the actual incident of abuse, but instead the personal interpretation of such an incident that is related to the outcome (McNally et al., 2000; Raphael & Cloitre, 1994; Rind et al., 1998; Widom & Morris, 1997). In terms of reactions to research participation, this suggests that the nature and degree of emotional reactions may also differ depending on an individual’s interpretation of past events. Therefore, operationalizing childhood sexual abuse as either selfreport only or court-substantiated only may not be the most meaningful or adequate way of assessing long-term effects, including reactions to research participation. Instead, using a combination of prospective and
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Reactions to Research Participation
retrospective information obtained from official records and self-reported accounts may produce a more accurate picture. This design would result in four distinct groups: (1) those with both court-substantiated cases and retrospective self-reports of maltreatment (“both”), (2) those with court-substantiated cases who do not later self-report the maltreatment (“court only”), (3) those with retrospective self-reports (“self-report only”), and (4) those without either substantiated cases or self-reports (“none”). A comparison of these four groups will take into account, at least partially, an individual’s interpretation and recall of past events (i.e., if the past abuse is not self-reported, it may be an indication that the individual does not consider himor herself to be a victim), which seems to be a potential factor that can influence later outcomes including reactions to participation in sensitive research. The Current Study
The present research examined reactions to research participation by victims of childhood sexual abuse (CSA) using data from an ongoing study of the long-term consequences of childhood maltreatment. Participants were divided into four groups (i.e., court only, self-report only, both, and none) and reactions to research participation were contrasted across the four groups. Based on previous research, we have four basic hypotheses: 1. Individuals with any history of childhood sexual abuse (court only, self-report only, or both) will report more emotional reactions and more negative reactions (perceived drawbacks and lower global evaluations) to research participation in comparison to individuals without any CSA (none). However, individuals with a history of CSA will also report significantly more personal benefits of research participation as compared to individuals without a history of CSA. 2. Symptoms of depression, anxiety, and posttraumatic stress disorder will moderate the relationship between childhood sexual abuse and reactions to research participation, such that individuals with a history of CSA and higher levels of psychiatric symptoms will report more emotional reactions and negative responses. 3. Based on the research suggesting that it is the personal interpretation of an event that is related to the outcome of sexual abuse, individuals with retrospective self-reports of CSA (self-report only and both) will report stronger emotional reactions and more negative responses (perceived drawbacks and lower global evaluations), yet more personal benefits in comparison to individuals with court-substantiated cases only (court only). This latter group of individuals
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will, in turn, report more emotional reactions, negative reactions, and personal benefits compared to individuals without any evidence of CSA (none), who will report the fewest emotional reactions, negative responses, and benefits. 4. Individuals with self-reported histories of CSA and higher levels of psychiatric symptoms will report more emotional reactions and negative responses compared to individuals with court-substantiated histories of CSA with comparable levels of psychiatric symptoms. Method Sample
Participants were adults who are part of an ongoing, large-scale longitudinal study of the consequences of childhood abuse and neglect. Using a prospective cohort design, children with documented cases of physical or sexual abuse or neglect from 1967 to 1971 were identified through court records in a Midwest metropolitan area and matched with nonabused and nonneglected children (controls) on the basis of age, sex, race, and approximate family social class at the time of maltreatment. All incidents of abuse and neglect occurred before the age of 12, and participants were followed prospectively into adulthood (see Widom [1989] for additional details on the study design and procedure). The present paper used data from multiple waves of the study. The first phase was archival in which abused and neglected children and matched controls were identified (see Widom, 1989). The second phase consisted of face-toface interviews approximately 22 years after the initial abuse or neglect incident (Interview 1, 1989–1995), and the third phase (more than 30 years following the maltreatment) took place during 2000–2002 (Interview 2). For the current research, only individuals with histories of CSA and controls were included. Participants were 460 individuals interviewed during Interview 2. The CSA group (court only, self-report only, both; n = 218) were significantly more female (62.4%, n = 136) than the control group (53.7%, n = 130), χ2 (1, N = 266) = 11.971, p = .001. The groups did not differ in terms of race (CSA: 59.2% non-Hispanic White, controls: 61.6% non-Hispanic White) and age (CSA: M = 40.03, SD = 3.27; controls: M = 39.50, SD = 3.51). Procedure
All participants were informed that they would be asked a series of potentially sensitive, personal questions about their family, education, occupation, health, and other experiences throughout their life. The interview (2000– 2002) involved an assessment of trauma and victimization
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history (Widom, Czaja, & Dutton, 2008; Widom et al., 2005) and a psychiatric assessment as well as a finger prick for blood and cortisol. Because of the intrusive nature of the trauma and victimization history assessment and finger prick, participants were asked to provide feedback on how they felt about participation. Participants completed the interviews in their homes or, if they preferred, another appropriate place. The interviewers were blind to the purpose of the study and to the inclusion of an abused and/or neglected group. Participants were also blind to the purpose of the study and were told that they had been selected to participate as part of a large group of individuals who grew up in that area during the late 1960s and early 1970s. Institutional review board approval was obtained for the procedures involved, and participants provided written, informed consent acknowledging that they were participating voluntarily. For individuals with limited reading ability, the consent form was presented and explained verbally. Measures
were viewed as a continuous indicator of reactions to research participation. The full measure has been shown to have good internal consistency, with Cronbach’s alphas for each of the five subscales ranging from .72 to .87 (DePrince & Chu, 2008). In the current study, considering that the items were selected from multiple subscales, the internal consistency (Cronbach’s alpha = .62) is reasonable for the eight items included here. Childhood Sexual Abuse official report of childhood sexual abuse
Childhood sexual abuse was assessed through review of official records processed during the years 1967–1971. Cases were taken from family and adult criminal court records from a county in a metropolitan area in the Midwest where the victim was a child between the ages of 0–11 years. Sexual abuse charges varied from relatively nonspecific charges of “assault and battery with intent to gratify sexual desires” to more specific charges of “fondling or touching in an obscene manner,” sodomy, incest, and rape.
Reactions to Research Participation Questionnaire Revised (RRPQ)
self-reports of childhood sexual abuse
The RRPQ (Newman et al., 2001) was developed to assess participants’ reactions to research participation and research procedures. Due to time limitations, eight items were selected from the full 23-item measure based on relevance of item content and were administered at the very end of Interview 2. The RRPQ was originally conceived as a collection of items that assessed both positive and negative reactions to research participation. However, over the past decade, developments have been made to the instrument and researchers more commonly use five subscales: Participation Factor, Personal Benefits Factor, Emotional Reactions Factor, Perceived Drawbacks Factor, and Global Evaluation Factor. The eight items used here fall into four of the five subscales—Personal Benefits Factor (“I found participating in the study personally meaningful”), Emotional Reactions Factor (“The research raised emotional issues for me that I had not expected,” “The research made me think about things I didn’t want to think about,” and “I experienced intense emotions during the research session and/or parts of the study”), Perceived Drawbacks Factor (“Had I known in advance what participating would be like I still would have agreed to participate,” and “I found the questions too personal”), and Global Evaluation Factor (“I trust that my replies will be kept private,” and “I was treated with respect and dignity”). Each item was rated on a 5-point scale ranging from one (“strongly disagree”) to five (“strongly agree”), and because most items had a full range of values represented in the current sample, the individual item scores
Information from the Lifetime Trauma and Victimization History (LTVH) interview (Widom et al., 2005) was used to assess self-reports of CSA during the interview. The full instrument contains 30 items and was designed as a structured interview to assess “serious events that may have happened to you during your lifetime” (Widom et al., 2005). The LTVH is comprehensive and easy to understand, and has shown adequate predictive, criterionrelated, and convergent validity with other reports of trauma events (Widom et al., 2005). The range of events spans seven different categories: general traumas, physical assault/abuse, sexual assault/abuse, family/friend murdered or committed suicide, witnessed trauma to someone else, crime victimization, and kidnapped or stalked. If the participant endorses any trauma or victimization incident, follow-up questions were asked about the number of times the incident occurred, the relationship to the perpetrator, and the age at which the event last occurred. If the item pertaining to sexual assault/abuse was endorsed, and the follow-up question revealed that the event had happened before age 12, the participant was considered to have a self-reported history of CSA. Current Psychiatric Symptoms current depression
The Center for Epidemiological Studies Depression Scale (CES-D; Radloff, 1977) was developed as a brief self-report measurement of depression symptoms for
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Reactions to Research Participation
community samples in the general population. The instrument has 20 items, and for each item respondents report how many times they have experienced the particular symptom within the past week on a scale from zero (“none of the time”) to three (“all of the time”). Total scores were used as a continuous indicator of current depression. The CES-D has shown adequate reliability and an internal consistency estimate of .85 and above (Hann, Winter, & Jacobsen, 1999; Radloff, 1977). In the current study, the scale showed similarly high internal consistency with a Cronbach’s alpha of .91. current anxiety
The Beck Anxiety Scale (BAS; Beck et al., 1988) is a brief self-report instrument designed to assess the severity of anxiety symptoms within the past month. The scale is composed of 21 items that describe symptoms of anxiety, and respondents rate the degree to which they have been affected by each symptom on a scale from zero (“not at all”) to three (“severely—I could barely stand it”). Total scores were used as a continuous indicator of current anxiety. In the current study, the instrument showed high internal consistency with a Cronbach’s alpha of .89, and other studies have reported similarly high internal consistency as well as satisfactory testretest reliability, convergent validity with other measures of anxiety, and discriminant validity with measures of depression (Fydrich, Dowdall, & Chambless, 1992). Current Posttraumatic Stress
The Composite International Diagnostic Interview (CIDI version 2.1; World Health Organization, 1990) was used to assess current symptoms of posttraumatic stress disorder (PTSD) resulting from either a childhood trauma or a traumatic event that occurred in adulthood. The instrument is a structured interview that can be administered by lay interviewers to assess symptoms of mental disorders as defined by both the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) and the World Health Organization’s International Classification of Disease (ICD) criteria. There are 20 items pertaining to PTSD symptoms, the first 17 of which are yes/no questions inquiring about the presence or absence of specific re-experiencing, avoidance, or hyper-arousal symptoms. The total count of endorsed symptoms was used as a continuous indicator of current PTSD symptoms. The instrument has been used widely in both clinical and research settings and is considered to be a satisfactory cross-cultural measure as well. Psychometric research has reported that CIDI diagnoses correlate significantly with independent clinical diagnoses (Kessler & Üstün, 2004).
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Analyses
Descriptive statistics are presented for the sample. Mean values were calculated for all continuous variables of interest (RRPQ item scores and the number of psychiatric symptoms reported). To measure the effects of CSA history and psychiatric symptoms on reactions to research participation, analyses of covariance (ANCOVA) were used, with age, sex, and race as covariates. Interactions between CSA history and psychiatric symptoms were examined to assess the potential moderating role of psychiatric symptoms on RRPQ ratings. Assumptions of an analysis of covariance were examined, and the distributions of several RRPQ items and psychiatric symptom counts were found to be significantly skewed, violating the homogeneity of variance assumption. It was possible to correct some variables with square root, reflection and square root, and logarithm base 10 transformations; however, not all variables involved in a single analysis could be transformed and corrected, which rendered accurate interpretation difficult. In order to take into account the existence of heterogeneity of variance in the sample, all analyses were first run with a series of generalized linear models controlling for age, sex, and race using either the ordinal logistic or Poisson loglinear distributions and link functions depending on whether the dependent variable was an RRPQ item rating or a symptom count variable. ANCOVAs were then run with the untransformed variables, and results did not differ in significance or relative magnitude of results. In addition, where possible, analyses were run with the individually transformed variables, and again, the pattern of results did not differ from those obtained with the untransformed variables. Therefore, the results using the original, untransformed variables are reported for ease and clarity of interpretation. Results Childhood Sexual Abuse and Reactions to Research Participation
Individuals with any history of CSA (court only, selfreport only, both; n = 218) were compared to individuals without CSA (n = 242) on all eight items of the RRPQ. In general, average item ratings did not differ greatly in magnitude between those with a history of CSA and those without (see Table 1). Additionally, ratings for the Personal Benefits Factor items and Global Evaluation Factor items were higher on average than the Emotional Reactions Factor items and the Perceived Drawbacks Factor items, suggesting that participation was generally viewed favorably. In terms of psychiatric symptoms, individuals with a
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TABLE 1. Descriptive Statistics for Reactions to Research Participation Questionnaire (RRPQ) Items and Concurrent Psychiatric Symptoms Using Any Childhood Sexual Abuse (CSA). RRPQ Items & Psychiatric Symptoms Personal Benefits Factor Participation Meaningful Emotional Reactions Factor Unexpected Emotions Unwanted Thoughts Intense Emotions Perceived Drawbacks Factor Would Still Participate Questions Too Personal Global Evaluation Factor Trust Replies Kept Private Treated With Respect Current Psychiatric Symptoms Depression Anxiety PTSD–Adult PTSD–Child
None Mean (SD) n = 242
Any CSA Mean (SD) n = 218
F(dfbetween, dfwithin)
p
ηp2
Observed Power
3.90 (0.89)
3.84 (0.84)
F(1,455) = .838
.360
.002
.150
2.77 (1.16) 2.79 (1.19) 2.68 (1.13)
2.86 (1.24) 2.94 (1.19) 2.92 (1.18)
F(1,455) = .251 F(1,455) = 1.066 F(1,455) = 3.437
.617 .302 .064
.001 .002 .007
.079 .178 .456
4.24 (0.61) 2.02 (0.73)
4.14 (0.69) 2.22 (0.90)
F(1,455) = 2.248 F(1,455) = 5.451
.135 .020*
.005 .012
.322 .644
4.62 (0.59) 4.75 (0.46)
4.49 (0.65) 4.72 (0.51)
F(1,454) = 5.592 F(1,453) = .868
.018* .352
.012 .002
.655 .153
10.36 (9.50) 7.21 (7.79) 6.14 (4.63) 4.36 (4.79)
12.77 (11.86) 9.96 (11.20) 7.41 (5.12) 6.81 (5.40)
F(1,455) = 4.592 F(1,455) = 7.047 F(1,455) = 4.786 F(1,455) = 21.604
.033* .008** .029*
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Sage Publications, Inc. is collaborating with JSTOR to digitize, preserve and extend access to Journal of Empirical Research on Human Research Ethics: An International Journal
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Reactions to Research Participation
77
Reactions to Research Participation in Victims of Childhood Sexual Abuse: A Comparison of Court-Substantiated and Retrospectively Self-Reported Cases Christina Massey and Cathy Spatz Widom John Jay College of Criminal Justice and the Graduate Center, CUNY ABSTRACT: we examined whether adults with a documented or self-reported history of childhood sexual abuse (CSA) report more emotional reactions and negative responses to research participation and whether psychiatric symptoms play a moderating role in their reactions. Using a prospective cohort design, individuals with documented histories of CSA and nonabused matched controls were followed up and interviewed in adulthood (n = 460). Reactions to research participation were measured with a brief questionnaire. Concurrent symptoms of depression, anxiety, and PTSD were assessed via standardized measures. Results showed that those with a history of CSA, documented or selfreported, experienced similar reactions compared to controls. Psychiatric symptoms predicted stronger emotional reactions and more negative responses, but also greater personal benefit, regardless of CSA history. KEY WORDS: childhood sexual abuse, reactions to research participation, vulnerable populations, psychiatric symptoms Received: March 18, 2013; revised: September 2, 2013
S
tandard ethical guidelines for research with human subjects dictate that participants should be treated with respect and protected from all foreseeable harm (Belmont Report; National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1978). To date, there is a wellestablished body of literature that provides empirical evidence of the extent to which research participation is experienced as negative or positive across several different types of paradigms. In studies involving reactions to participation in trauma research specifically, this literature has led to extensive discussions regarding various ethical concerns in trauma research and relevant procedures that can be considered by researchers when determining how to minimize harm (e.g., Becker-Blease & Freyd, 2006;
Fontes, 2004). However, even though existing evidence suggests that trauma research is generally well-tolerated across samples, settings, and paradigms (Becker-Blease & Freyd, 2006; Newman, Risch, & Kassam-Adams, 2006), the role of various factors and characteristics other than abuse history that influence whether a person experiences negative reactions is not well understood (Newman & Kaloupek, 2009; Newman et al., 2006). From an ethical standpoint, when vulnerable populations and sensitive research topics are involved, as in the case of studies of trauma and victimization, it is particularly important to know what factors may be associated with negative reactions to research participation to further minimize potential harm. In the studies that have examined reactions to research participation, reactions are often measured in terms of cost-benefit ratios, where the self-reported positive reactions and perceived benefit of the potential research findings have been found to balance or outweigh any unanticipated distress (e.g., DePrince & Chu, 2008; Edwards et al., 2009; Griffin et al., 2003; Kassam-Adams & Newman, 2005; Newman, Walker, & Gefland, 1999). One such large-scale study involving trauma research that illustrates this type of examination (Widom & Czaja, 2005) concluded that adults with court-substantiated histories of child abuse and neglect were more likely to report negative reactions; however, these individuals were also more likely to rate participation as significantly more meaningful than participants without court-substantiated histories of childhood maltreatment. Similarly, one recent study examining reactions among undergraduate research participants to surveys focusing on trauma and sex found that the participants were more likely to report negative reactions compared to participants who completed other types of surveys, but they were also more likely to consider the research meaningful and, thus, positive. Furthermore, the level of stress experienced by the participants who completed the trauma and sex surveys was consistently rated as less significant than common life stressors, such as getting a speeding ticket, performing poorly on a test, or watching a horror film (Yeater et al., 2012). These results are consistent with previous studies that have examined the use of trauma-based questionnaires and
Journal of Empirical Research on Human Research Ethics, Vol. 8, No. 4, pp. 77–92. print issn 1556-2646, online issn 1556-2654. © 2013 by joan sieber. all rights reserved. please direct all requests for permissions to photocopy or reproduce article content through the university of california press’s rights and permissions website, http://www.ucpressjournals.com/reprintinfo.asp. DOI: 10.1525/jer.2013.8.4.77
This content downloaded from 128.223.86.31 on Fri, 23 Sep 2016 17:19:39 UTC All use subject to http://about.jstor.org/terms
78
C. Massey, C. Widom
interviews (e.g., Cromer et al., 2006; Newman & Kaloupek, 2009). In addition, some evidence suggests that individuals who report more psychiatric symptoms experience greater levels of distress while participating in research (e.g., Carlson et al., 2003; Johnson & Benight, 2003; Ruzek & Zatzick, 2000; Newman & Kaloupek, 2009; Newman et al., 2006; Walker et al., 1997; Widom & Czaja, 2005). Most studies that have included psychiatric symptoms have looked at symptoms of posttraumatic stress disorder as it is the disorder most closely associated with trauma experiences, but these studies have yielded fairly inconsistent results overall (Newman & Kaloupek, 2009). While fewer studies focus on symptoms of other psychiatric disorders, there is evidence that strong emotional reactions are also related to reports of depression and anxiety, regardless of abuse or neglect status (Widom & Czaja, 2005). Concern about negative reactions to research participation and psychiatric symptoms may be particularly salient in the case of childhood sexual abuse because research has shown that individuals who report histories of childhood sexual abuse also report high rates of psychiatric symptoms (e.g., Gilbert et al., 2009; Green et al., 2010; McLaughlin et al., 2010; Molnar, Buka, & Kessler, 2001). Some studies report little improvement over time in sexually abused individuals who develop such symptoms (e.g., Calam et al., 1998; Gilbert et al., 2009), whereas other longitudinal studies suggest that symptoms begin improving within months after the abuse has occurred (Gomes-Schwartz et al., 1990). Furthermore, the majority of studies find that a certain proportion of abused individuals are asymptomatic and well adjusted (Finkelhor, 1990; Finkelhor & Browne, 1985; Rind, Tromovitch, & Bauserman, 1998). This apparent inconsistency indicates that the impact of the experience of childhood sexual abuse varies widely and that not everyone develops symptoms of emotional or behavioral disturbances following childhood victimization. Given this variability in outcomes and the relationship between maladaptive psychiatric symptoms and negative reactions to research participation, it seems particularly important to examine whether the presence of psychiatric symptoms plays a moderating role in reactions to research participation experienced by individuals with a history of childhood sexual abuse. Methodological Concerns
While existing evidence suggests that participation in trauma research is well tolerated and that the experience is perceived as meaningful despite intense emotions, the studies that have focused specifically on childhood sexual abuse have used different operational definitions or criteria to identify the victims. The vast majority of
studies investigating reactions to participation in sensitive research have used self-reports of prior victimization (e.g., Carlson et al., 2003; DePrince & Chu, 2008; Draucker, 1999; Griffin et al., 2003). As a result of this almost exclusive reliance on this operational definition in the literature (that is, retrospective self-reports), it is unclear whether these results will generalize to studies that involve documented, court-substantiated cases of childhood sexual abuse. It is widely recognized that childhood sexual abuse is difficult to detect and that victims often wait years, even decades, before reporting the abuse (e.g., John Jay College, 2004; Smith et al., 2000), resulting in numerous cases of childhood maltreatment that lack official or documented proof. Because of these concerns, using retrospective self-reports to identify victims of CSA seems warranted. However, it is important to determine whether participation in research is well tolerated among those with court-substantiated cases as well, given that trauma research is likely to include at least some individuals with such documented histories. Research using court-substantiated cases to define a history of childhood maltreatment is admittedly rare, but participants who self-report may have been involved in legal proceedings as children, and therefore, the self-reports of victimization may have an accompanying court substantiation. On the other hand, it is not unusual to find individuals with official, documented histories of sexual abuse, who, as adults, do not report such histories (e.g., Widom & Morris, 1997). These individuals may actually be enrolled in trauma studies as control participants. From a methodological standpoint, the possibility that the control group may involve victims of childhood sexual abuse threatens the internal validity of research findings regarding reactions to research participation. Given this, it seems important to examine reactions to research participation in a sample that is more representative of samples that are commonly used in trauma research, i.e., one involving both courtsubstantiated and self-reported cases of childhood sexual abuse. Many trauma researchers also posit that it may not be the actual incident of abuse, but instead the personal interpretation of such an incident that is related to the outcome (McNally et al., 2000; Raphael & Cloitre, 1994; Rind et al., 1998; Widom & Morris, 1997). In terms of reactions to research participation, this suggests that the nature and degree of emotional reactions may also differ depending on an individual’s interpretation of past events. Therefore, operationalizing childhood sexual abuse as either selfreport only or court-substantiated only may not be the most meaningful or adequate way of assessing long-term effects, including reactions to research participation. Instead, using a combination of prospective and
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Reactions to Research Participation
retrospective information obtained from official records and self-reported accounts may produce a more accurate picture. This design would result in four distinct groups: (1) those with both court-substantiated cases and retrospective self-reports of maltreatment (“both”), (2) those with court-substantiated cases who do not later self-report the maltreatment (“court only”), (3) those with retrospective self-reports (“self-report only”), and (4) those without either substantiated cases or self-reports (“none”). A comparison of these four groups will take into account, at least partially, an individual’s interpretation and recall of past events (i.e., if the past abuse is not self-reported, it may be an indication that the individual does not consider himor herself to be a victim), which seems to be a potential factor that can influence later outcomes including reactions to participation in sensitive research. The Current Study
The present research examined reactions to research participation by victims of childhood sexual abuse (CSA) using data from an ongoing study of the long-term consequences of childhood maltreatment. Participants were divided into four groups (i.e., court only, self-report only, both, and none) and reactions to research participation were contrasted across the four groups. Based on previous research, we have four basic hypotheses: 1. Individuals with any history of childhood sexual abuse (court only, self-report only, or both) will report more emotional reactions and more negative reactions (perceived drawbacks and lower global evaluations) to research participation in comparison to individuals without any CSA (none). However, individuals with a history of CSA will also report significantly more personal benefits of research participation as compared to individuals without a history of CSA. 2. Symptoms of depression, anxiety, and posttraumatic stress disorder will moderate the relationship between childhood sexual abuse and reactions to research participation, such that individuals with a history of CSA and higher levels of psychiatric symptoms will report more emotional reactions and negative responses. 3. Based on the research suggesting that it is the personal interpretation of an event that is related to the outcome of sexual abuse, individuals with retrospective self-reports of CSA (self-report only and both) will report stronger emotional reactions and more negative responses (perceived drawbacks and lower global evaluations), yet more personal benefits in comparison to individuals with court-substantiated cases only (court only). This latter group of individuals
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will, in turn, report more emotional reactions, negative reactions, and personal benefits compared to individuals without any evidence of CSA (none), who will report the fewest emotional reactions, negative responses, and benefits. 4. Individuals with self-reported histories of CSA and higher levels of psychiatric symptoms will report more emotional reactions and negative responses compared to individuals with court-substantiated histories of CSA with comparable levels of psychiatric symptoms. Method Sample
Participants were adults who are part of an ongoing, large-scale longitudinal study of the consequences of childhood abuse and neglect. Using a prospective cohort design, children with documented cases of physical or sexual abuse or neglect from 1967 to 1971 were identified through court records in a Midwest metropolitan area and matched with nonabused and nonneglected children (controls) on the basis of age, sex, race, and approximate family social class at the time of maltreatment. All incidents of abuse and neglect occurred before the age of 12, and participants were followed prospectively into adulthood (see Widom [1989] for additional details on the study design and procedure). The present paper used data from multiple waves of the study. The first phase was archival in which abused and neglected children and matched controls were identified (see Widom, 1989). The second phase consisted of face-toface interviews approximately 22 years after the initial abuse or neglect incident (Interview 1, 1989–1995), and the third phase (more than 30 years following the maltreatment) took place during 2000–2002 (Interview 2). For the current research, only individuals with histories of CSA and controls were included. Participants were 460 individuals interviewed during Interview 2. The CSA group (court only, self-report only, both; n = 218) were significantly more female (62.4%, n = 136) than the control group (53.7%, n = 130), χ2 (1, N = 266) = 11.971, p = .001. The groups did not differ in terms of race (CSA: 59.2% non-Hispanic White, controls: 61.6% non-Hispanic White) and age (CSA: M = 40.03, SD = 3.27; controls: M = 39.50, SD = 3.51). Procedure
All participants were informed that they would be asked a series of potentially sensitive, personal questions about their family, education, occupation, health, and other experiences throughout their life. The interview (2000– 2002) involved an assessment of trauma and victimization
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history (Widom, Czaja, & Dutton, 2008; Widom et al., 2005) and a psychiatric assessment as well as a finger prick for blood and cortisol. Because of the intrusive nature of the trauma and victimization history assessment and finger prick, participants were asked to provide feedback on how they felt about participation. Participants completed the interviews in their homes or, if they preferred, another appropriate place. The interviewers were blind to the purpose of the study and to the inclusion of an abused and/or neglected group. Participants were also blind to the purpose of the study and were told that they had been selected to participate as part of a large group of individuals who grew up in that area during the late 1960s and early 1970s. Institutional review board approval was obtained for the procedures involved, and participants provided written, informed consent acknowledging that they were participating voluntarily. For individuals with limited reading ability, the consent form was presented and explained verbally. Measures
were viewed as a continuous indicator of reactions to research participation. The full measure has been shown to have good internal consistency, with Cronbach’s alphas for each of the five subscales ranging from .72 to .87 (DePrince & Chu, 2008). In the current study, considering that the items were selected from multiple subscales, the internal consistency (Cronbach’s alpha = .62) is reasonable for the eight items included here. Childhood Sexual Abuse official report of childhood sexual abuse
Childhood sexual abuse was assessed through review of official records processed during the years 1967–1971. Cases were taken from family and adult criminal court records from a county in a metropolitan area in the Midwest where the victim was a child between the ages of 0–11 years. Sexual abuse charges varied from relatively nonspecific charges of “assault and battery with intent to gratify sexual desires” to more specific charges of “fondling or touching in an obscene manner,” sodomy, incest, and rape.
Reactions to Research Participation Questionnaire Revised (RRPQ)
self-reports of childhood sexual abuse
The RRPQ (Newman et al., 2001) was developed to assess participants’ reactions to research participation and research procedures. Due to time limitations, eight items were selected from the full 23-item measure based on relevance of item content and were administered at the very end of Interview 2. The RRPQ was originally conceived as a collection of items that assessed both positive and negative reactions to research participation. However, over the past decade, developments have been made to the instrument and researchers more commonly use five subscales: Participation Factor, Personal Benefits Factor, Emotional Reactions Factor, Perceived Drawbacks Factor, and Global Evaluation Factor. The eight items used here fall into four of the five subscales—Personal Benefits Factor (“I found participating in the study personally meaningful”), Emotional Reactions Factor (“The research raised emotional issues for me that I had not expected,” “The research made me think about things I didn’t want to think about,” and “I experienced intense emotions during the research session and/or parts of the study”), Perceived Drawbacks Factor (“Had I known in advance what participating would be like I still would have agreed to participate,” and “I found the questions too personal”), and Global Evaluation Factor (“I trust that my replies will be kept private,” and “I was treated with respect and dignity”). Each item was rated on a 5-point scale ranging from one (“strongly disagree”) to five (“strongly agree”), and because most items had a full range of values represented in the current sample, the individual item scores
Information from the Lifetime Trauma and Victimization History (LTVH) interview (Widom et al., 2005) was used to assess self-reports of CSA during the interview. The full instrument contains 30 items and was designed as a structured interview to assess “serious events that may have happened to you during your lifetime” (Widom et al., 2005). The LTVH is comprehensive and easy to understand, and has shown adequate predictive, criterionrelated, and convergent validity with other reports of trauma events (Widom et al., 2005). The range of events spans seven different categories: general traumas, physical assault/abuse, sexual assault/abuse, family/friend murdered or committed suicide, witnessed trauma to someone else, crime victimization, and kidnapped or stalked. If the participant endorses any trauma or victimization incident, follow-up questions were asked about the number of times the incident occurred, the relationship to the perpetrator, and the age at which the event last occurred. If the item pertaining to sexual assault/abuse was endorsed, and the follow-up question revealed that the event had happened before age 12, the participant was considered to have a self-reported history of CSA. Current Psychiatric Symptoms current depression
The Center for Epidemiological Studies Depression Scale (CES-D; Radloff, 1977) was developed as a brief self-report measurement of depression symptoms for
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Reactions to Research Participation
community samples in the general population. The instrument has 20 items, and for each item respondents report how many times they have experienced the particular symptom within the past week on a scale from zero (“none of the time”) to three (“all of the time”). Total scores were used as a continuous indicator of current depression. The CES-D has shown adequate reliability and an internal consistency estimate of .85 and above (Hann, Winter, & Jacobsen, 1999; Radloff, 1977). In the current study, the scale showed similarly high internal consistency with a Cronbach’s alpha of .91. current anxiety
The Beck Anxiety Scale (BAS; Beck et al., 1988) is a brief self-report instrument designed to assess the severity of anxiety symptoms within the past month. The scale is composed of 21 items that describe symptoms of anxiety, and respondents rate the degree to which they have been affected by each symptom on a scale from zero (“not at all”) to three (“severely—I could barely stand it”). Total scores were used as a continuous indicator of current anxiety. In the current study, the instrument showed high internal consistency with a Cronbach’s alpha of .89, and other studies have reported similarly high internal consistency as well as satisfactory testretest reliability, convergent validity with other measures of anxiety, and discriminant validity with measures of depression (Fydrich, Dowdall, & Chambless, 1992). Current Posttraumatic Stress
The Composite International Diagnostic Interview (CIDI version 2.1; World Health Organization, 1990) was used to assess current symptoms of posttraumatic stress disorder (PTSD) resulting from either a childhood trauma or a traumatic event that occurred in adulthood. The instrument is a structured interview that can be administered by lay interviewers to assess symptoms of mental disorders as defined by both the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) and the World Health Organization’s International Classification of Disease (ICD) criteria. There are 20 items pertaining to PTSD symptoms, the first 17 of which are yes/no questions inquiring about the presence or absence of specific re-experiencing, avoidance, or hyper-arousal symptoms. The total count of endorsed symptoms was used as a continuous indicator of current PTSD symptoms. The instrument has been used widely in both clinical and research settings and is considered to be a satisfactory cross-cultural measure as well. Psychometric research has reported that CIDI diagnoses correlate significantly with independent clinical diagnoses (Kessler & Üstün, 2004).
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Analyses
Descriptive statistics are presented for the sample. Mean values were calculated for all continuous variables of interest (RRPQ item scores and the number of psychiatric symptoms reported). To measure the effects of CSA history and psychiatric symptoms on reactions to research participation, analyses of covariance (ANCOVA) were used, with age, sex, and race as covariates. Interactions between CSA history and psychiatric symptoms were examined to assess the potential moderating role of psychiatric symptoms on RRPQ ratings. Assumptions of an analysis of covariance were examined, and the distributions of several RRPQ items and psychiatric symptom counts were found to be significantly skewed, violating the homogeneity of variance assumption. It was possible to correct some variables with square root, reflection and square root, and logarithm base 10 transformations; however, not all variables involved in a single analysis could be transformed and corrected, which rendered accurate interpretation difficult. In order to take into account the existence of heterogeneity of variance in the sample, all analyses were first run with a series of generalized linear models controlling for age, sex, and race using either the ordinal logistic or Poisson loglinear distributions and link functions depending on whether the dependent variable was an RRPQ item rating or a symptom count variable. ANCOVAs were then run with the untransformed variables, and results did not differ in significance or relative magnitude of results. In addition, where possible, analyses were run with the individually transformed variables, and again, the pattern of results did not differ from those obtained with the untransformed variables. Therefore, the results using the original, untransformed variables are reported for ease and clarity of interpretation. Results Childhood Sexual Abuse and Reactions to Research Participation
Individuals with any history of CSA (court only, selfreport only, both; n = 218) were compared to individuals without CSA (n = 242) on all eight items of the RRPQ. In general, average item ratings did not differ greatly in magnitude between those with a history of CSA and those without (see Table 1). Additionally, ratings for the Personal Benefits Factor items and Global Evaluation Factor items were higher on average than the Emotional Reactions Factor items and the Perceived Drawbacks Factor items, suggesting that participation was generally viewed favorably. In terms of psychiatric symptoms, individuals with a
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TABLE 1. Descriptive Statistics for Reactions to Research Participation Questionnaire (RRPQ) Items and Concurrent Psychiatric Symptoms Using Any Childhood Sexual Abuse (CSA). RRPQ Items & Psychiatric Symptoms Personal Benefits Factor Participation Meaningful Emotional Reactions Factor Unexpected Emotions Unwanted Thoughts Intense Emotions Perceived Drawbacks Factor Would Still Participate Questions Too Personal Global Evaluation Factor Trust Replies Kept Private Treated With Respect Current Psychiatric Symptoms Depression Anxiety PTSD–Adult PTSD–Child
None Mean (SD) n = 242
Any CSA Mean (SD) n = 218
F(dfbetween, dfwithin)
p
ηp2
Observed Power
3.90 (0.89)
3.84 (0.84)
F(1,455) = .838
.360
.002
.150
2.77 (1.16) 2.79 (1.19) 2.68 (1.13)
2.86 (1.24) 2.94 (1.19) 2.92 (1.18)
F(1,455) = .251 F(1,455) = 1.066 F(1,455) = 3.437
.617 .302 .064
.001 .002 .007
.079 .178 .456
4.24 (0.61) 2.02 (0.73)
4.14 (0.69) 2.22 (0.90)
F(1,455) = 2.248 F(1,455) = 5.451
.135 .020*
.005 .012
.322 .644
4.62 (0.59) 4.75 (0.46)
4.49 (0.65) 4.72 (0.51)
F(1,454) = 5.592 F(1,453) = .868
.018* .352
.012 .002
.655 .153
10.36 (9.50) 7.21 (7.79) 6.14 (4.63) 4.36 (4.79)
12.77 (11.86) 9.96 (11.20) 7.41 (5.12) 6.81 (5.40)
F(1,455) = 4.592 F(1,455) = 7.047 F(1,455) = 4.786 F(1,455) = 21.604
.033* .008** .029*
