Responding to Sexual Abuse in Health Care: Development of a Guide for Patients

Abstract

This report details the development of a stakeholder- and evidence-informed online resource guide for patients that provides information to raise awareness about sexual abuse in health care, the value of chaperones, and options for responding to sexual abuse. The guide was developed to reflect lessons learned from 10 years of researching physician wrongdoing (ie, sexual violations, improper prescribing, and unnecessary invasive procedures), a 5-year National Institutes of Health-funded mixed-methods study of 280 cases of egregious wrongdoing in medicine, and an expert working group. Focus groups were conducted with 22 patients from diverse backgrounds to obtain feedback on the acceptability of the guide. Thematic analysis of the focus groups yielded 6 key themes: 1) empowering patients, 2) recognizing and responding to sexual abuse, 3) educating patients about reporting options, 4) educating patients on availability of chaperones, 5) balancing trust and mistrust, and 6) using simple language. Qualitative data from the focus groups (ie, audio files and detailed notes taken by the research team) suggested that the guide effectively informed and empowered patients to recognize and effectively respond to sexual misconduct in health care. The guide is publicly available and has been disseminated nationally to patient health advocates and public health agencies.

Sexual abuse of patients by physicians is a rare yet persistent problem that can lead to considerable psychological and emotional harm.¹ This harm creates mistrustful relationships with future physicians, which in turn contributes to poor patient outcomes.^2,3 Trust between a physician and patient has been associated with increased willingness to seek care, treatment plan adherence, and better health outcomes.⁴

It is estimated that only 5% to 10% of victims ever report sexual abuse by physicians.^1,5 Evidence for this is limited and likely underreported. Providing patients with information about identifying sexual abuse and mechanisms to report it could equip them with the knowledge needed to protect themselves if a physician sexually abuses them or others. At the same time, raising awareness of this issue might unnecessarily proliferate patient mistrust. Thus, information shared with patients about sexual abuse needs to increase awareness while maintaining trust. Education on sexual abuse in medicine also needs to empower patients without blaming or placing undue burdens on victims of abuse.^6,7

Our research team examined more than 6000 court documents, press releases, and news reports related to 280 cases of serious wrongdoing by physicians in medicine that occurred between 2008 and 2015.⁸ Of those, 101 involved sexual abuse of patients (89.1% female, 60.4% adults) by physicians primarily in solo (38.6%) and large (41.6%) medical practices and from various areas of medicine (14.9% internal medicine, 12.9% obstetrics/gynecology, 16.8% psychiatry/neurology, 39.6% family medicine/pediatrics, 15.9% other).⁷ Following case analysis, we convened a multidisciplinary working group of 13 experts (eg, in health law, physician education and remediation, patient advocacy, and state medical boards [SMBs]) to reach consensus on how these findings could inform medical education, policies, and oversight practices to reduce the frequency of sexual abuse by physicians.⁶ One recommendation was to provide patients with educational materials to inform reasonable expectations and choices with regard to seeking health care and protecting themselves and others from harmful physicians. This information could empower patients to take action when they have questions or wish to report sexual abuse by their physician.

Patients may not recognize what constitutes sexual abuse; for example, patients do not always know when an intimate examination is indicated and that it should be gloved. With this ambiguity, patients may feel uncomfortable questioning their doctor’s conduct. Patients are often uncertain about how to proceed and who to contact when faced with these situations. They report in ineffective ways (eg, to institutional staff rather than state medical boards or law enforcement), and abuse can occur even in front of chaperones who are typically not trained.^7,9

Educating patients on what constitutes sexual abuse by a physician and various modes of reporting serves to protect them. The purpose of this project was to develop a practical, useful resource guide for patients that provides information about responding to sexual abuse in health care.

METHODS

Guide Development

Taking what was learned from our review of 101 cases of sexual abuse of patients by physicians and recommendations crafted by the aforementioned expert working group^6,7 and other research data,⁸ we developed a resource guide titled “Sexual Abuse in Healthcare: A Guide for Patients.” Guide content includes: 1) an introduction describing the guide’s purpose; 2) definitions of behaviors that constitute sexual misconduct; 3) advice on asking for and acting as a chaperone; 4) information about where to seek help if a patient suspects something is wrong; and 5) avenues and considerations for reporting sexual misconduct to both law enforcement and SMBs, including differences between these reporting options.

This resource guide is included in Online Appendix A and is downloadable as a PDF, free and available via the website www.PreventingSexAbuse.org. To refine the resource guide, we conducted 4 focus groups to obtain the perspectives of patients and obtain feedback on whether the guide effectively provides information about responding to sexual abuse in health care without undermining trust in the health care system or asking patients to shoulder the burden of ensuring their own safety. The semi-structured focus group guide can be found in Online Appendix B.

Guide Refinement

Following each focus group, minor refinements to the resource guide were made (eg, removing confusing information, clarifying complex wording) based on feedback from participants. After all focus groups were conducted, we used aggregate feedback from all focus groups to inform final revisions to the guide.

Before finalizing guide content, 3 physicians from our network — an internist, a pediatrician, and an obstetrician/gynecologist each selected for their experience in health care ethics and patient trust-building — reviewed it for accuracy and clarity. In the 101 cases of sexual abuse examined, nearly 70% of the physician wrongdoers specialized in 1 of those 3 areas of medicine.⁷ Thus, we sought perspectives from physicians representing these specialty areas who would provide quality feedback. The physician reviewers also provided feedback on whether any guide content could offend physicians or cultivate mistrust. They reported that the information presented in the guide was accurate and useful, and only minor stylistic changes were made based on their feedback.

Participants

A total of 22 female participants were recruited to participate in 1 of 4 focus groups through a research participant registry. While sexual abuse affects both men and women, we included only women because women are disproportionately the victims of sexual abuse.¹⁰ We conducted 2 focus groups with White women and 2 with Black women, as racial concordance among focus group members can help individuals speak more freely about sensitive issues.^11,12 Participants were compensated for their time with a $50 Amazon.com gift card. Demographic information about participants is provided in Table 1. This research was approved by the Washington University School of Medicine institutional review board.

Table 1.

Participant (N=22) Demographics

Demographic variable	Count	Percentage
Sex
Female	22	100%
Male	0	0%
Race
Black or African American	10	45%
White	12	55%
Age
20–29 years	8	36%
30–39 years	5	23%
40–49 years	1	5%
50–59 years	3	14%
60+ years	5	23%
Education
Less than high school	0	0%
High school	2	9%
Some college	3	14%
Associate’s degree	1	5%
Bachelor’s degree	10	45%
Master’s degree	6	27%
Doctoral degree	0	0%
Other	0	0%

Thematic Analyses

We used a general inductive approach¹³ to identify key themes from the focus groups. This approach involves systematic in-depth reading or listening of raw qualitative data to identify emerging dominant themes. Four focus groups, with 22 participants total, proved a large enough sample to reach thematic saturation, as described by Guest et al.¹⁴ After each focus group, members of the research team met to identify and discuss the key themes that emerged, giving special focus to those themes that appeared across focus groups. Few, if any, novel themes emerged from the final focus group. The themes emerging from this iterative process represent the consensus of participants across the focus groups.

RESULTS

Themes

Six key themes emerged from the thematic analysis, with no major differences across groups. These included 1) empowering patients, 2) recognizing and responding to sexual abuse, 3) educating patients about reporting options, 4) educating patients on the availability of chaperones, 5) balancing trust and mistrust, and 6) using simple language. Themes are further described in the ensuing subsections, with highlighted quotes selected by authors to illustrate each theme.

Empowering Patients

Many participants acknowledged that, although the topic of sexual abuse may cause patients to feel uncomfortable, addressing the topic directly empowers patients. Several participants noted that the language in the guide gives patients agency to take action in response to sexual abuse but avoids being overly directive about how and when to report.

“I liked that there was somewhat of a balance between what the patient should do and what the provider is expected to do. Not putting the onus on the patient, which I thought was important.”

Recognizing Sexual Abuse

Participants expressed concern that patients may be hesitant about what actions to take if they are unsure about what happened between them and their health care provider. Because sexual abuse covers a broad spectrum of behaviors, this leads patients to question whether less egregious sexual misconduct is actually reportable. The guide provides information on the entire range of behaviors that constitutes sexual abuse and are reportable, giving patients the confidence to proceed.

“… I do like the pinpointing of the types of behaviors, of what’s considered sexual [abuse] because a lot of times people do not know what it is, and so you giving them the examples for what that is, that definitely needs to be in the resource guide.”

Educating Patients About Reporting Options

All participants thought that presenting multiple approaches for navigating the process of reporting sexual misconduct is necessary given the unique context of each situation. Patients may want to report to law enforcement, a SMB, or both. The guide outlines how these options differ in terms of time commitment, patient burden, privacy, and potential outcomes.

“I really liked the list of reporting options. I didn’t realize the way you report something can change, depending on the speed, your privacy ...”

Educating Patients on Availability of Chaperones

Many participants felt that non-medical professional chaperones, such as trusted loved ones, were an underutilized resource and did not realize that requesting loved ones to accompany them during a visit to their physician’s office was acceptable. Having a chaperone can help patients feel more at ease, prevent misunderstandings, and may protect against sexual misconduct.

“I liked the chaperone for your loved ones part [of the guide] because most people they really don’t think about that.”

Balancing Trust and Mistrust

Participants had mixed opinions about where a guide of this nature should be made available to the public and how this placement would affect trust in their physician. Some participants felt that seeing this guide in their physician’s office would be a welcome resource that signals their physician wants them to be aware of sexual misconduct in health care.

“If this was in my doctor’s office, I would feel better knowing that my doctor wants me to look out for sexual abuse.”

Conversely, other participants thought that seeing this guide in their physician’s office would cause alarm and make them feel uneasy:

“… it’s like — why would I want this in my doctor’s office? Well, this must have happened here … I don’t know where it would be, but I don’t want this in my doctor’s office.”

Broadly, participants were enthusiastic about making this resource guide accessible through nontraditional means, including libraries, community centers, churches, and Planned Parenthood.

Using Simple Language

Participants expressed the importance of using simple, straightforward language free from academic jargon. Doing so allows the guide content to be understood by individuals from diverse educational, socioeconomic, and cultural backgrounds.

“I would also be cognizant of the underserved population. Some of the jargon is a little scientific, a little academic. Put it in a layperson terminology so that everyone can understand.”

Including plain language in the guide also serves to be inclusive of different backgrounds by avoiding making assumptions about the guide readers’ knowledge of or capacity to interpret scientific jargon.

Dissemination

The guide has been disseminated widely to individuals and professional societies who work with patients (eg, patient advocates) and who are involved in physician remediation (eg, SMB members). We asked that they share the guide on their website and with members of their professional networks. In particular, we shared the guide with the National Patient Advocate Foundation, Alliance of Professional Health Advocates, National Association of Social Workers, and the Immigrant & Refugee Service Provider Network.

We also shared the guide with the leadership of the Federation of State Medical Boards (FSMB) and with 41 members of SMBs who are collaborating with our research team. A link to the guide has been posted on the education section of the FSMB website, and FSMB leadership disseminated the link via e-newsletter to members of SMBs throughout the United States in August 2021. Since then, anecdotal feedback that the guide is useful and of high quality has been received.

DISCUSSION

The resource guide’s content and framing were informed by empirical evidence, expert recommendations, and patient perspectives. The guide informs patients how to recognize sexual misconduct in health care and empowers them to respond effectively. A survey link for patients and health care providers to provide feedback on guide content is provided at the end of the guide. Future refinement of the guide will incorporate this feedback, including feedback from trauma-informed health care providers.

Because the resource guide’s content is written at an 8th grade reading level,¹⁵ patients of different educational backgrounds, socioeconomic statuses, races, and ages can easily understand and act on its content. Future iterations of the guide could include making it available in multiple languages to increase accessibility. It should be noted that only 4 focus groups were conducted, and participants in these focus groups were exclusively female and highly educated. Conducting more than 4 focus groups with a mix of genders and with educational backgrounds more representative of the general public may have yielded different themes. Despite these limitations, focus group participants shared informative feedback about the guide.

Focus group participants expressed positive views of the guide, were enthusiastic that it will be shared publicly, and thought it would benefit patients from all backgrounds. Future research should examine how this guide and the research supporting its development can be used as a foundation for developing additional resources and informational tools that empower medical advocacy. We invite readers of this article to disseminate the guide, which is available for free download at www.PreventingSexAbuse.org, in ways they deem appropriate.

Patient-Friendly Recap.

• Sexual abuse of patients by physicians is rare but does occur, resulting in considerable immediate harm as well as fueling mistrust of health care going forward.

• Authors developed a resource guide for patients that raises awareness about physician wrongdoing, the value of patient chaperones, and options for responding to sexual abuse. Contents of the guide were focus-grouped among 22 patients from diverse backgrounds.

• Qualitative analysis of focus group feedback indicated the guide effectively informed and empowered patients to recognize and respond to sexual misconduct in health care.

• The guide is now publicly available online (see www.PreventingSexAbuse.org).