In a previous article, we reviewed the major tenets and goals of community-based participatory research (CBPR). In this article, we'll explain the lessons we learned from our PCORI-funded project, titled "Facilitating Male Trauma Survivors' Meaningful Involvement in Research."
If you do a quick search for prevalence rates of childhood sexual abuse for males as compared to females, you'll find that the numbers vary immensely. Some studies report childhood sexual abuse for boys is as low as one in 20 (National Center for Victims of Crime, 2012), while some note as high as one in 6 (Briere & Elliot, 2003). These numbers increase when examining male sexual abuse across the lifetime - with reports that 25% of men will experience sexual abuse in their lifetime (Black et al., 2011). Fear, shame, and traditional gender role socialization may intersect such that these disclosure rates fail to truly capture the magnitude of this type of abuse.
Men who have sexual abuse histories are at a greater risk for developing depression, posttraumatic stress disorder (PTSD), substance abuse problems, and poor sense of self-worth and image, as compared to men without a sexual abuse history. In addition, suicidal thoughts and behaviors are 13 times more likely to be reported by boys who reported sexual abuse, as compared to girls (Garnefski & Arends, 1998). Moreover, for those boys who report sexual abuse, as compared to girls, they are at greater risk for feelings of shame (Hanson et al., 2008). Perhaps because of this shame, men are less likely to disclose abuse. For example, in a sample of 487 male adult survivors of sexual abuse, men delayed telling anyone about the abuse an average of about 20 years (Easton, 2012).
The aims of our grant were:
- To gain an understanding of male trauma survivors' perspectives on involvement in research and equip and empower them to play active and substantive roles as equitable partners in all aspects of research;
- To create a repository of top-voted research questions that could be utilized in the creation of future comparative effectiveness research studies; and
- To build curricula that will prepare investigators and survivors to more effectively work together on research endeavors.
1. Failure to Properly Disseminate Research Study Findings May be Part of the Problem
In January 2017, we conducted a focus group of male survivors of sexual abuse alongside notable researchers in the field of traumatic stress. Survivors were asked what they wanted to know from research findings - what topics did they want answered, what outcomes did they think mattered? Focus group participants were asked to generate relevant research priorities and testable questions with the intent to improve the quality of research for male survivors of sexual abuse.
These were the top 10 questions male survivors wanted to know from research:
1. What is the impact of sexual abuse on men's emotional functioning, including is it possible to be happy?
2. What is the impact of sexual abuse on men's sexual functioning?
3. What are the resilience factors in men that help to prevent associated emotional distress or help them heal from sexual trauma?
4. How can male survivors who are struggling alone in the community be reached and find they are not alone?
5. How can male survivors access solid clinical and research information?
6. How are alternative forms of medicine (e.g., meditation and yoga) related to recovery from trauma?
7. What are the methods/tools that can help men heal from trauma?
8. What is the impact of racial/ethnicity in terms male survivors' mental health symptoms, treatment engagement and outcome?
9. In what ways can peer groups be harnessed to promote men's recovery and reduce their isolation?
10. What can be done to prevent sexual abuse of boys and men, including how to identify the perpetrators?
Interestingly, a majority of these questions can actually already be found in the empirical literature which means that the information is simply not getting disseminated to those whom the research affects the most. A key goal of CBPR is to co-create research that accurately represents the needs of the community and communicate these findings to all parties, which suggests that researchers who use such a framework may actually be integral to the disseminating of findings to the community members who would benefit most.
Male survivors want to know information that, to some extent, has already been studied. Thus, we don't have a research problem, we likely have a dissemination problem.
More information about the methods and results from this portion of the focus group can be found here for the first 50 people who want to download a free e-print: https://www.tandfonline.com/eprint/wcKSII246XCVPeGCZrpV/full
2. Community-Based Participatory Research Can Increase Research Engagement…Provided Researchers Are Willing to Use Non-traditional Avenues
Based on our research findings from the first focus group, we hosted a second focus group in January 2018. Again, we invited male survivors of sexual abuse and researchers in the field of male sexual abuse to share their thoughts and feelings around participating in research.
Male sexual abuse survivors are less likely to disclose abuse, in part, because they do not recognize or label it as abuse, assault or rape (Artime, McCallum, & Peterson, 2014). As such, they do not look for these keywords in research participation solicitations or in publications. Rather, books which focus less on "trauma" but more on "healing" and "empowerment", or traditional masculine-related issues and gender-socialization, may be a gateway to engaging survivors in and disseminating research findings.
Participants, across both in-person focus groups, noted books and authors that they had found helpful and were often the first foray into reading summaries of research results, with one participant noting that "my path to healing was through books". Self-help books, as well as educationally-focused books were understandably found to be less research-intensive and easier to understand than traditional research journals. Participants also noted that simply searching online was a powerful means of finding out information.
The importance placed on dissemination efforts by CBPR supports using books and online articles (i.e., blog posts and op-eds) to share findings to diverse audiences across social media platforms and other networking sites, as well as to introduce individuals to the field of research and perhaps stimulate their interest in engaging and participating themselves.
3. Community-Based Participatory Research Can Dismantle Barriers to Research Participation
Barriers such as perceived, and real, power differentials between survivors and researchers can be addressed through a CBPR framework. One participant comprehensively explained:
"I think a lot of us, as survivors, have this experience of the power dynamic of being victimized and the perpetrator being somebody who holds that authority or power over us or wields it almost like a weapon in a lot of ways. And I think that can get transferred to other people that we see in superior positions throughout our lives. The reason I bring that up is I think it is another barrier towards participating in clinical research. Trusting professionals, being willing to disclose and have open conversations. There's a sense - even if it's not overt, a lot of times I think we carry that sense of vulnerability and we're a little less willing to trust or to speak openly about that, because of that part of our experience and the ways in which we were silenced by the perpetrators."
Another survivor noted that a barrier to participation was the erroneous belief that male survivors will go on to harm others. This fear of being misunderstood and even viewed as a potential perpetrator, endorsed by all of the participants, thwarted research participation: "But in general, I absolutely think - and that's really sad that there's a lot of survivors that feel that way. They don't have any urge to harm a child, but they are afraid to have children. They're afraid to be around children because, oh my gosh, what if something comes out of me because this happened to me? I've never experienced that. I'd rather die than hurt a kid, thank God. And that's how I put it. I don't say I'm a better person because I'm not an offender. I say thank God I don't have that - whatever it is inside me. But we know it doesn't come from abuse. So, it's hard. I think that's a big impediment to getting people to participate in research."
CBPR's framework, by nature, places researchers and survivors on the same team, suggesting that both parties have something to offer the other. Researchers lend their expertise in design and methodology, and perhaps even subject material, while survivors lend their expertise in the community through their lived experiences, which help to recruit, retain, and engage with members. Both groups are discouraged from keeping these skill sets in silos, but rather, are encouraged to teach one another to possesses these skills to that everyone is a fully functioning, capable member of the team. Additionally, survivors lend credence to the interpretation and construct validity of findings, where researchers can lend knowledge around the internal validity and methodological interpretations of said findings.
4. Research Participation Can be Healing in Its Own Right
CBPR is a way of empowering men to speak their truths. In fact, one study showed that participating in trauma-related research has been viewed as an invaluable experience by some (Griffin, Resick, Waldrop, & Mechanic, 2003).
This was echoed by participants in our focus groups as well. One survivor explained why he decided to participate in the focus group: "I certainly have not talked to...[other individuals]… because of both the stigma and the bullsh*t you're going to get from people. It's an issue I don't know how you're going to get past, other than guys coming out and saying, hey, I was abused, and there's a path forward. Which is kind of why I'm here. I have to step up because I'm dealing with something in my 60's that I should have dealt with in my 20's. I guess it's kind of up to guys like us."
Another noted that, "Every single one of us sitting around this table can speak at length to the ways in which we've been misunderstood. We've been shamed. We've had our experiences denied by sometimes therapists, sometimes professionals, sometimes friends and family members. How do we acknowledge all of these experiences as members of the survivor community, but it seems like it hasn't gotten out yet in the way that we see - you know, look at what just happened with the #MeToo movement. And yes, there are allegations of male victims within that. The Kevin Spacey stuff. But inevitably, it's the stories of female victimization that take priority. And we're seeing stronger responses around that. But we haven't yet gotten, I think a parallel acknowledgement of male victims."
The survivors felt that participating in research was a way of healing, as well as helping the field and others to better understand this understudied domain.
5. Qualitative, In Addition to Quantitative, Research Is Key
Survivors noted that, in the type of atmosphere that they were in, such as the focus group, "you can get more out of a person…. We sit here, and we talk and we share common experiences than you can by just doing a dried-out survey. It's like, how old were you when you had sex? It's just very cold and impersonal. [I think they] don't care about me. All they want is statistics."
Male survivors were directly asked about whether they would be more likely to complete a survey if they were first asked about their unique experiences. One survivor agreed that he would in fact complete "a questionnaire at the end for feedback." Another chimed in that, "You're going to get more participation if you offer the qualitative." The same survivor elaborated that, "You're far more likely to garner participation if you begin with an empathic sort of, listen, I want to hear about you. There are millions of you, but you are who I am concentrating on at the moment."
Thus, beginning with qualitative research that builds rapport, safety, trust, and egalitarian connection may be one way to engage male survivors of sexual abuse in research. The challenge for researchers is figuring out a balance in terms of how to get the quantitative and qualitative pieces, recognizing that each methodology has its own unique aspects and benefits.
As a result of two in-person focus groups held in 2017 and 2018 with male survivors of sexual abuse and researchers in this particular field, we found that: dissemination of results to the community lags behind the research being conducted; non-traditional avenues of research dissemination may be the best way to reduce this research-practice gap; a community-based participatory research framework may be one of the most salient ways to reduce barriers to research engagement; participating in research can be healing and ameliorative in its own right; and that qualitative research is often perceived as less threatening and invasive as compared to quantitative forms of research.
Cite This Article
Ellis, A. E., Anderson, C., Simiola, V., & Cook, J. M. (2018, August). Lessons learned from male survivors of sexual abuse: Summary of results from our community based participatory research project. [Web article]. Retrieved from http://www.societyforpsychotherapy.org/lessons-learned-from-male-survivors-of-sexual-abuse
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