- Email: [email protected]
Virtual Patient Training to Improve Reproductive Health Care for Women With Intellectual Disabilities
Virtual Patient Training to Improve Reproductive Health Care for Women With Intellectual Disabilities Sara E. Boyd, MS, Carla L. Sanders, RN, MS, Harold L. Kleinert, EdD, Marlene B. Huff, LCSW, PhD, Sharon Lock, RN, PhD, Stephanie Johnson, RN, BC, MSN, Kim Clevenger, RN, MSN, Nathania A. Bush, RN, MSN, Eileen Van Dyke, PA-C, MPS, and Tara L. Clark, RN, MSN A multimedia virtual patient module, involving the case of a young woman with mild intellectual disabilities with a complaint of diffuse abdominal pain, was developed as a clinical training tool for students in health care professions. Primary objectives following use of the module included improved knowledge and reduced perception of difficulty in treating women’s health patients with intellectual disabilities. The module was developed using an iterative, collaborative process of a core development team that included medical professionals, multimedia specialists, the parent of a child with intellectual disability, and a disability advocate. Over the course of the module, students were required to identify appropriate and effective clinician–patient interactions in addition to relevant medical and developmental concerns for this patient population. Pilot data from a sample of nursing, physician assistant, and medical students suggest that the module is an effective tool for both improving students’ knowledge and reducing their perception of difficulty in providing care to women’s health patients with intellectual disabilities. J Midwifery Womens Health 2008;53:453– 460 © 2008 by the American College of Nurse-Midwives. keywords: intellectual disabilities, mental retardation, reproductive health, health disparities
INTRODUCTION The approximately 2.5 million women with developmental disabilities in the United States face extensive and significant barriers to appropriate reproductive health care.1 Reduced frequencies of medical screenings, deficient or nonexistent approaches to obtaining informed consent for procedures, and limited opportunities to participate in health care decision-making are lamentably commonplace for women with intellectual and developmental disabilities. In addition, women with developmental disabilities may face barriers such as physically inaccessible health care facilities and inattention to or dismissal of their experiences of sexual abuse.1,2 This article describes the development of a multimedia training module for health care professionals and students, and a subsequent effectiveness study. BACKGROUND Researchers have suggested that the disparities in health care access and quality that persons with disabilities face may be accounted for by some combination of: limitations in health care provider education in this area,3 discriminatory attitudes on the part of health care providers,4 the residential conditions of patients with developmental disabilities,5 Medicaid reimbursement patterns,6,7 managed care funding, and difficulty in communicating the nature of complex and sometimes painful medical options to a patient with subaverage
Address correspondence to Sara E. Boyd, MS, Human Development Institute, 8 Mineral Industries Bldg., University of Kentucky, Lexington, KY 40506. E-mail: [email protected]
Journal of Midwifery & Women’s Health • www.jmwh.org © 2008 by the American College of Nurse-Midwives Issued by Elsevier Inc.
intellectual functioning.2,8 Women with intellectual disabilities, a subset of women with developmental disabilities, may experience even more disparity in quality of services due to the low social status of people with intellectual disabilities. Intellectual disability has replaced the term mental retardation as the convention of many professional organizations, including the American Association on Intellectual and Developmental Disabilities (formerly the American Association on Mental Retardation) and the President’s Committee on Intellectual Disability (formerly the President’s Committee on Mental Retardation). This new terminology is described as more accurate, more modern, and less stigmatizing. The terms intellectual disability, mental retardation, and cognitive impairments will be used interchangeably throughout this discussion. Note that the term developmental disability is not synonymous with these terms. Individuals with developmental disabilities experience significant lifelong impairments, but these impairments may not necessarily be cognitive and/or intellectual in nature. A population-based study by Parish and Saville10 found that women with cognitive limitations were 72% less likely than their counterparts without cognitive limitations to have obtained a Pap test within the year before the survey. Women with cognitive limitations were 45% less likely to have obtained a mammogram within the last year, compared to their peers without cognitive limitations. Additionally, the women with cognitive limitations were 49% less likely to report that their health care providers treated them with respect and 48% less likely to report that healthcare providers spent sufficient time with them, compared female peers with453 1526-9523/08/$34.00 • doi:10.1016/j.jmwh.2008.04.017
out cognitive limitations. Other studies examining routine preventative reproductive health care have had similar findings.5,11 Patient satisfaction is an essential measure of quality of care, and has been associated with enhanced decisionmaking involvement and improved compliance with medical recommendations.12 Improving communication between the health care provider and patient may increase patient satisfaction, particularly if the health care provider engages the patient with empathy, friendliness, attentiveness, and positive reinforcement, while encouraging patient questions.12 For individuals with intellectual and developmental disabilities, patient-centered care and a focus on effective communication may be even more imperative. Patients with intellectual and developmental disabilities are not likely to be self-referred for women’s health services; thus, the reason for the health care referral is often based on the perceptions of a family member or other caregiver. Taking a careful history while actively listening to the needs of the patient may
Sara E. Boyd, MS, completed her undergraduate degree in Psychology at the University of Illinois at Urbana-Champaign. She completed her MS in Counseling Psychology and her certificate in Developmental Disabilities at the University of Kentucky. She is currently completing the doctoral program in Clinical Psychology at the University of Kentucky, Lexington, KY. Carla L. Sanders, RN, MS, completed her MS in Rehabilitation Counseling, as well as a Certificate in Developmental Disabilities, at the University of Kentucky. She is currently pursuing her Psychiatric Nurse Practitioner Degree at the University of Kentucky, Lexington, KY. Harold L. Kleinert, EdD, completed his undergraduate degree in Humanities from the University of Louisville. He completed his MA in Special Education at the University of Minnesota and obtained his EdD in Special Education (with an emphasis upon Severe Disabilities) at the University of Kentucky. He is currently the Executive Director of the Human Development Institute at the University of Kentucky, Lexington, KY. Marlene B. Huff, LCSW, PhD, completed her undergraduate degree in Psychology, her MSW, and her PhD at the University of Kentucky. She currently serves as Associate Professor in the Department of Pediatrics at the University of Kentucky College of Medicine, Lexington, KY. Sharon Lock, RN, PhD, completed her PhD at the University of South Carolina and is currently a Graduate Associate Professor of Nursing at the University of Kentucky, Lexington, KY. Stephanie Johnson, RN, BC, MSN, completed her undergraduate degree in Nursing at Capital University. She completed her MSN at Bellarmine University and attained her Post Graduate Certificate in Nursing Education/ Curriculum Development from Kent State University. She is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY. Kim Clevenger, RN, MSN, completed her undergraduate degree in Psychology at Morehead State University. She completed her MSN at Bellarmine University and is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY. Nathania A. Bush, RN, MSN, completed her undergraduate degree in Nursing and her MSN at Eastern Kentucky University. She is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY. Eileen Van Dyke, PA-C, MPS, is currently an Assistant Professor in the College of Health Sciences Division of Physician Assistant Studies at the University of Kentucky, Lexington, KY. Tara L. Clark, RN, MSN, completed her undergraduate degree in Nursing at Eastern Kentucky University. She obtained her MSN at Vanderbilt University and is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY.
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reveal additional health care concerns often unrelated to the original referral. In a survey of nurses by Kopac and Fritz,13 respondents noted that family members and caregivers sometimes requested medical interventions while ignoring other areas of concern without regard for the patient’s wishes. One respondent noted that family members “request tubal ligations or hysterectomies, sometimes to avoid hygiene issues.” Another respondent stated that, “parents are adamant that their daughter is non-sexual.” A survey by Lesselier and Van Hove14 validated these anecdotal statements and found that some individuals with intellectual disabilities indicated a caregiver disapproved of their sexual desires and indicated that sexual health was either ignored or treated as a problem. Although not all family members or direct service workers endorse these attitudes or engage in these behaviors, these findings underscore the need for health care providers to be able to communicate directly with patients with intellectual disabilities and to investigate patient concerns from the perspective of the patient. In addition to identifying patient concerns and detailing patient history, health care providers may need to solicit information about sensitive or taboo subjects, such as sexual behavior or abuse, that have been ignored or discouraged by significant others. The establishment of healthy rapport will ease patient anxiety and/or fear of negative judgment when discussing such topics. Aside from the importance of providing patient-centered care for women with intellectual and developmental disabilities, there are several medical and psychological concerns associated with this patient population. Distressingly, the prevalence of sexual abuse of people with intellectual and developmental disabilities is shockingly high. A study by Sobsey and Doe15 estimated that nearly 50% of people with intellectual and developmental disabilities will experience 10 or more sexually abusive incidents over their lives. These findings suggest that health care providers should carefully inquire about the presence of a current or past history of abuse with all patients who have intellectual and developmental disabilities. Additionally, providers should be able to make appropriate referrals for existing psychological sequelae of abuse, be alert for signs of sexual abuse (particularly for individuals with impaired communication ability), and learn reporting requirements for the type of abuse noted by the professional. Other considerations when working with patients who have developmental disabilities and are seeking services from a women’s health care specialist include endocrine disturbances associated with epilepsy,16 menstrual hygiene and changes in behavior related to menstruation,17 assessment of sexual knowledge and experience,18 and reproductive health disorders associated with specific genetic syndromes.19 These considerations have been discussed at length, specifically with respect to the practices of midwives and nurse practitioners, by Kaplan.20 Also, Kaplan reports that Volume 53, No. 5, September/October 2008
practicing patient-centered, respectful care with women with disabilities can improve the provision of services to all patients, and that this area of practice can be an opportunity for leadership by midwives and nurse practitioners. In 2004, the US Department of Health and Human Services Office on Disability and Office on Women’s Health convened a national summit, subsequently issuing a white paper that recommended the creation and promotion of health care provider curricula and continuing education programs that specifically address the care of women with disabilities in “areas of competence including attitudes, knowledge, and skills.”21 Even so, the paucity of educational resources and opportunities for health care providers to learn about women with developmental disabilities has been noted by several researchers.9,22 In 2006, largely in response to the problem of health care disparities and a lack of professional educational tools, the Preservice Health Training Project at the University of Kentucky assembled a team of nursing faculty, medical faculty, and social worker/medical faculty, a woman with a disability, and a parent of a young woman with an intellectual disability. The mission of this team was to develop a multimedia educational module for a broad audience of medical professionals, focusing primarily on improving module users’ skills in interacting with patients with developmental and intellectual disabilities. An interactive “virtual patient” format was selected for the instructional design, delivered via CDROM. The CD-ROM format was chosen because at the time the project was conceived, CD-ROMs provided a better vehicle for high-quality video demonstrations than did Web-based applications, and a CD-ROM could serve as a future reference tool for primary care provider students as they entered into clinical practice. The team next devised a scenario that could best illustrate the teaching/learning objectives: A young woman with intellectual disability visiting a primary care provider, complaining of diffuse abdominal pain. The module follows her experience from initial arrival at the clinic through pelvic examination, differential diagnosis, and provision of results by the clinician. The learning objectives and where they were addressed in the module are described in Table 1. An instructional system comprised of Information Point-Decision Point-Video Demonstration (IP-DP-VD) units was employed throughout the interactive cases. In each of these IP-DP-VD units, an Information Point consisting of a concise 1-page summary of pertinent information related to appropriate interaction or medical considerations preceded a question directly related to that information. These Information Point questions were designed as a quick review of case-specific content. Information Points were typically followed by Decision Point questions, which required the user to indicate how he/she would proceed at a particular juncture in the case. Journal of Midwifery & Women’s Health • www.jmwh.org
Information and Decision Points were developed to specifically address module objectives, and required the student user to apply his or her knowledge or skill to the presenting situation. METHODS Upon completion of the module development, the project received institutional review board approval to conduct an effectiveness study with undergraduate nursing students, nurse practitioner students, medical residents, and physician assistant students in two universities. Nursing and physician assistant students took the modules to receive extra credit as part of the class, but participation in the effectiveness study (i.e., the completion of pretests) was voluntary. Medical resident participants did not receive extra credit for completion of the modules; rather, they were encouraged by their instructor to complete the module as part of their rotation. As with the nursing and physician assistant students, participation in the effectiveness study was voluntary. All instruments were coded and participants were instructed to abstain from writing their names on any study materials. All participants were also provided with a letter describing the protocol and the voluntary basis of participation, and told that the responses would be anonymous. The core team was integrally involved in the development of evaluation instruments used in the modules’ effectiveness study. The Disability Situations Inventory– Women’s Health Version (DSI-WH) was developed as a measure of user-perceived difficulty in addressing the needs of individuals with developmental disabilities. This survey was administered before and after completing the modules. The team chose to develop a new instrument because existing questionnaires were insufficiently specific about known women’s health care issues that are frequently problems for patients with intellectual disabilities. Questions were developed based on the core team’s judgment of potentially difficult situations that health care providers need to address in providing women’s health care to patients with intellectual disabilities. Faculty, parent, and consumer team members contributed to the final set of items. The situational items were further selected to reflect the module competencies identified by the Development Team. The inventory consisted of eight items for students to self-rate on a five-point Likert scale. Higher numbers indicated greater perceived difficulty. The item ratings were summed to produce a total score for the inventory. The items are listed in Table 2. Pre- and posttests of multiple choice questions were developed; each consisted of 15 items based upon module content. Knowledge items targeted various healthrelated issues for each case. The pre- and posttests were identical. The knowledge test had items related to topics such as informed consent, guardianship, sedation, preparing office staff to work with patients with intellectual 455
Table 1. Learning Objectives for Users of the Women’s Health Module Student Learning Competencies
Where Addressed in Module
1. Characterize the emotional, cognitive, physical, and medical circumstances typically associated with providing reproductive health care to a woman with developmental disabilities 2. Effectively query patients with developmental and/or intellectual disabilities about their medical history and current symptoms 3. Demonstrate an awareness of the health care issues associated with menarche that may present in women with developmental disabilities 4. Effectively and cautiously consider all appropriate options when a patient demonstrates resistance to the examination 5. Demonstrate an awareness of the problem of sexual abuse of women with developmental disabilities, including physical signs of abuse, prevalence of abuse, and mandated reporting requirements 6. Develop previsit strategies to assist patients in preparing themselves for the exam before the appointment 7. Demonstrate comfort and competence when providing reproductive health and sexual education to patients with developmental and/or intellectual disabilities and their families 8. Demonstrate an awareness of the judicious use of sedation during examination, as well as alternatives to sedation 9. Assess for and implement common and necessary accommodations for the examination of women with developmental and/or intellectual disabilities 10. Demonstrate an understanding of the complexities of informed consent as they relate to the provision of care with women who have intellectual disabilities
Observe in the module as the PCP is careful to both respect Carrie’s autonomy and interact at a pace comfortable for Carrie. Notice that although the PCP begins the health history with Carrie’s staff member present, she specifically verifies the information with Carrie, while offering to conduct the history alone should Carrie so desire Note that issues surrounding hormonal regulation of menstruation are addressed within the module’s clinical interaction Observe the PCP’s calm and attentive manner regarding Carrie’s past negative experience with gynecologic exams. The PCP’s acknowledgement of Carrie’s concern helps foster a cooperative attitude The PCP in the clinical interaction is careful to query Carrie about inappropriate touch and/or unwanted sexual overtures Notice how the module includes information about the use of social stories as an intervention to help diminish anxiety about the gynecologic exam Observe as the clinician discusses issues surrounding Carrie’s sexual activity and knowledge of sexual health care both nonjudgmentally and at a level that Carrie can understand Students will read information points regarding sedation and be queried concerning their comprehension of the topic See the resource document in the module titled “Accommodating Patients.” Notice that the PCP in the video portion of the module has been careful to allow more time for Carrie’s examination Note that the issue of informed consent is directly addressed within the module dialogue, as well as supported by the module resource document “Legal and Ethical Issues”
Student Attitudinal Competencies
Notes/Comments
1. Be sensitive and empathic to the emotional barriers and cultural considerations of women with developmental disabilities, with regard to reproductive health care
Observe as the PCP in this module demonstrates empathic understanding as Carrie relates that she “doesn’t want it to hurt!” Furthermore, the PCP is careful to provide the opportunity for Carrie to see her privately The PCP in the video conducts a nonjudgmental, supportive conversation with Carrie regarding her desire to engage in sexual activity with her boyfriend—at the same time offering sound patient education concerning the prevention of pregnancy and disease Notice in the module that the office staff treat Carrie with genuine, friendly respect. Observe how the nurse helps Carrie to relax via casual conversation and breathing techniques during the difficult portion of the exam Students will read resource materials on sexual abuse in women with intellectual and developmental disabilities and be queried regarding their understanding of the significance of this issue Observe as the PCP in the Women’s Health Module treats Carrie with the same concern and dignity as any other patient by respecting Carrie’s right to healthcare privacy and sexual self-determination
2. Recognize that normal, healthy sexuality is possible for people with intellectual and/or developmental disabilities
3. Strive to create an atmosphere of acceptance and competence for women with developmental disabilities in the office setting 4. Recognize the importance of screening for sexual abuse and the impact of sexual abuse on women with developmental disabilities 5. Apply congruent, profession-specific ethical guidelines/considerations when caring for women with disabilities
PCP ⫽ primary care provider.
disabilities, accommodations in providing a pelvic exam, risk factors for sexual abuse, and communicating with individuals with intellectual disabilities. The knowledge items were scored as either correct (value of 1) or 456
incorrect (value of 0) and then added to produce a total test score that reflected the proportion of items correctly answered. Knowledge items are available, by request, from the corresponding author (S.E.B.). Volume 53, No. 5, September/October 2008
Table 2. Disability Situational Inventory* Some situations that clinicians encounter may be difficult to handle, awkward, or embarrassing. Please evaluate how difficult you would find each of the following situations and circle the number which corresponds to the difficulty on a scale of 1 to 5, with 5 being the most difficult. 1. A new patient (a young woman in her mid-20s) presents for an annual exam. She uses an augmentative communication device to communicate. 2. A woman with cerebral palsy arrives for her appointment with her personal care provider, who informs you that she will require accommodations in positioning for the exam. 3. The parents of a 15-year-old woman with a moderate intellectual disability request that she have an endometrial ablation procedure because of concerns about menstrual management. 4. The mother of a 19-year-old woman with Down syndrome accompanies her daughter to her annual exam. At the end of the exam, she asks you about contraceptive options, expressing fear that her daughter is vulnerable to sexual abuse and may become pregnant. 5. A 40-year-old woman with an intellectual disability tells you that she asked her sister to schedule an appointment with you because of pain and that “a man at work hurt me down there” (gesturing toward her genital area). She does not want to talk about the incident with anyone but you. 6. The personal care attendant of a new patient suggests that she be sedated for her pelvic exam and Pap smear, citing the patient’s “trauma history” and past history of “uncooperativeness” with doctor visits. 7. The guardian of a 21-year-old woman with a moderate intellectual disability asks you if your office prescribes “libido-reducing medications.” 8. A 26-year-old woman with a mild intellectual disability tells you that she and her boyfriend plan to marry and move in together, over their parents’ objections. She says, “I’m my own guardian, but they try to tell me I can’t get married!” *Each item was rated on a Likert scale with 1 ⫽ least difficult and 5 ⫽ most difficult.
Finally, a Usability Scale asked the participants to rate: 1) the need for this program for primary care provider students and practicing primary care providers; 2) general ease of use and navigational features; 3) the accuracy and comprehensiveness of the program content; 4) the value of interacting with a “virtual patient” in improving clinical skills; 5) the value of additional elements in the module, including the information points and resource documents; and 6) any technical problems encountered with the use of the CD-ROM. A five-point Likert scale was used for participant responses. Usability items were averaged individually, because each item was specific to a facet of user-friendliness, and the development team sought to identify specific strengths and weaknesses of the module. For each of the above instruments, data were analyzed using SPSS (version 15.0; SPSS, Inc., Chicago, IL). Every student was provided each of these instruments, along with a copy of the CD-ROM, in a coded packet. Students were instructed to complete the pretests before doing each of the modules, to complete the posttests and Usability Scale after completing the modules, and to return their completed packets to their course instructor. Students were allowed to keep the CD-ROM for future reference.
RESULTS A total of 101 students from the University of Kentucky and Morehead State University participated in the study; this number represents 67% of the students eligible to participate. Of those students, 48 (47.5%) were physician assistant students; 31 (30.7%) were graduate nursing students; 18 (17.8%) were undergraduate nursing students; and 4 (4.0%) were medical residents. The majority (80.2%) of the participants were female. In terms of age, 77.4% of the participants were under 30 years of age, 15.2% were between 31 and 40 years of age, and 5.4% were more than 40 years of age. Participants were not asked to report their ethnicity or race, thus information about these demographic features is not available. Perceived Difficulty Ratings Table 3 presents the pre- and posttest participant ratings for the Women’s Health Disability Situational Scale and results of the pre- and posttest knowledge measures. Of the 101 students who participated in the study, 99 students completed both the pre– and post–Situational Inventories. For these 99 students, the mean pretest score was 23.9 (standard deviation [SD], 4.6) and the mean posttest score was 20.2 (SD, 5.5), with lower scores
Table 3. Disability Situational Inventory (DSI) and Knowledge Test Results Measure
Pretest Mean
SD
Posttest Mean
SD
t-statistic
P value
95% CI
Effect Size
DSI Knowledge
23.9 10.4
4.6 2.3
20.2 12.4
5.5 2.4
7.84 8.46
⬍.001 ⬍.001
2.8–4.6 1.6–2.5
5.0* 9.1*
The knowledge measure has a range of 0 to 15, with higher scores indicating more accuracy. The DSI measure has a range of 12 to 60, with lower scores indicating less perceived difficulty and higher scores indicating more perceived difficulty. 95% CI ⫽ 95% confidence interval of the difference; SD ⫽ standard deviation. *These effect sizes are large, according to Cohen’s 1992 guidelines.22
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indicating greater comfort level. Cohen’s d for this difference is 5.0; this is a large effect size.22 Overall, 92% of students had scores reflecting increased comfort for the scenarios described in the instrument. An analysis of variance (ANOVA) was conducted to assess for differences between student groups, specifically for the nurse practitioner, undergraduate nursing, and physician assistant student groups, on Disability Situational Scale ratings. Results of the ANOVA indicated no support for group differences on this measure (F[3, 95] ⫽ 1.523; P ⫽ .138). It should be noted that the small number of medical residents (N ⫽ 4) resulted in insufficient statistical power to detect a difference in this group, if one exists. Knowledge Measure A total of 99 participants completed both the pre- and posttests. Mean scores on the 15-item test were 10.4 (SD, 2.3) for the pretest and 12.4 (SD, 2.4) for the posttest. Cohen’s d for this difference is 9.1; this is a large effect size.22 The effect size represents a gain in knowledge scores after viewing the modules (i.e., increased accuracy), with an average pretest score for all participants of 69.3% and an average posttest score of 82.7%. An ANOVA was again conducted to assess for differences between student groups, specifically for the nurse practitioner, undergraduate nursing, and physician assistant student groups, on Knowledge test scores. Results of the ANOVA indicated no support for group differences on this measure (F[3, 95] ⫽ 1.120; P ⫽ .345). Usability Scale Eighty-nine students completed the Usability Scale. Students agreed on the need of the program for themselves; their mean rating of 4.05 for themselves fell slightly above the “needed” point on the scale (a rating of 4). When asked for whom the program would be most beneficial, the highest agreement was for second- and third-year students (mean of 4.18 on the 5-point scale). Students rated first-year students as least appropriate users of the program (mean, 3.43; SD, 1.22), providing stronger endorsement for second-/third-year students (mean, 4.18; SD, .93) and practitioners (mean, 4.07; SD, 1.11). Students also felt comfortable in using the CD-ROM– based program. Participants tended to endorse the program’s ease of use, the functionality of onscreen buttons and tools, and the effectiveness of the video clips. Students agreed or strongly agreed that the overall content was accurate and comprehensive and that the resource section contributed to the overall effectiveness of the module. Finally, students strongly agreed that both the Information Points and Decision Points were effective in enhancing their learning. 458
DISCUSSION Overall, the results of the Disability Situational Scale, the Knowledge Measure, and the Usability Scale converge to suggest that participants expressed less perceived difficulty in working with patients with intellectual disabilities following completion of this module. Students also communicated that their knowledge of relevant issues for this patient population was enhanced as a result of completing the Women’s Health Module. Finally, participants’ feedback indicated that they found the interactive virtual patient format easy to use, and they believed there is a need for education related to the needs of women’s health care for patients with intellectual disabilities. Four main limitations are apparent in this study. The first is the lack of a control group. Ideally, researchers would have compared students using these virtual patient type programs with students receiving typical instruction, including clinical experience with patients with intellectual disabilities. Unfortunately, the use of a control group of this type was not within the scope or resources of this particular project. Few students are currently receiving any type of instruction about patients with intellectual disabilities, and the available research suggests that students have limited, if any, clinical contact with patients having intellectual disabilities during their training.23,24 Instead of using a control group of students who were not exposed to any education related to women’s health care patients with intellectual disabilities, the researchers on this project chose to do a within-group study of before and after knowledge and attitudes toward these patients. Additional research is needed to determine the relative effectiveness, cost– benefit ratio, and possible integration of direct clinical experience and simulated patient training. The second limitation of this study was that the measures used were not previously evaluated and validated to ensure that they actually measure our intended constructs. This is particularly problematic with regard to the Disability Situational Scale, which aims to measure changes in perceived difficulty of clinical situations involving patients with intellectual and developmental disabilities. However, although instruments exist to measure attitudes toward people with intellectual disabilities,25 we were unable to locate an existing, validated measure for use with students that addressed women’s health issues specifically. A third limitation was the lack of measurement of participants’ previous amount and quality of experiences with people with disabilities in general, and people with intellectual disability specifically. Questions assessing this experience could have been included within the demographics section of the Usability Scale. A well-researched instrument validated for use with students would likely have generated useful results. To our knowledge, no such standard instruVolume 53, No. 5, September/October 2008
ment for assessing the amount and quality of experiences with people with disabilities exists. The development of such an instrument would be a substantial step forward for research in this area of student education. A final limitation concern is the magnitude of change in the pre- and posttest measures of the Disability Situational Scale. While a strong effect size was detected in our pre- and posttest results in perceived difficulty in addressing women’s healthcare issues for our participants (a Cohen’s d of 5.07 for the difference between the pre- and posttest means), the actual mean change in perception of difficulty was only 3.6 points, or only a 0.45 average change for each of the eight rated items within the 5-point Likert scale. While these results are statistically significant, it is uncertain whether they represent a substantial or clinical difference in perceived difficulty level for study participants. Additional research in this area should focus on the degree to which this type of training, alone or in conjunction with face-to-face clinical training, impacts students’ competencies and attitudes in terms of providing care to women with intellectual disabilities. CONCLUSION The Women’s Health Module represents an opportunity for primary care students to learn more about caring for patients with intellectual disabilities, either as an adjunct to clinical education or when actual clinical exposure is limited or may not be feasible. The study results support the use of the Women’s Health Module to teach midwifery, nursing, nurse practitioner, medical, and physician assistant students respectful, competent, patientcentered care for patients with intellectual disabilities. Future research is indicated in order to more clearly identify and measure constructs of interest (e.g., changes in attitudes toward people with intellectual disabilities, the effect of previous experience on educational gains in this area, etc.). In the meantime, the increased availability of easy-to-use, effective educational tools such as the Women’s Health Module may help to ameliorate the disparities in quality of health care for people with intellectual disabilities. We wish to thank the undergraduate nursing, nurse practitioner, and physician assistant students who participated in the effectiveness study for this module. Additionally, the authors thank Adrianne, Mary, and Paula, who provided invaluable insight and much-needed realism to this project and its products. Finally, the authors wish to acknowledge the Kentucky Council on Developmental Disabilities, which provided much appreciated funding for the Preservice Health Training modules.
Health of women with intellectual disabilities. Oxford: Blackwell Publishing; 2002:22–36. 2. Iezzoni LI. Make no assumptions: Communication between persons with disabilities and clinicians. Assist Technol 2006;18: 212–9. 3. U.S. Public Health Service. Closing the gap: A national blueprint to improve the health of persons with mental retardation. Report of the Surgeon General’s Conference on Health Disparities in Mental Retardation. Rockville, MD: U.S. Department of Health and Human Services; 2001. 4. Gill CJ, Brown AA. Health and aging issues for women in their own voices. In: Walsh PN, Heller T, eds. Health of women with intellectual disabilities. Oxford: Blackwell Publishing; 2002: 139 – 49. 5. Lewis MA, Lewis CE, Leake B, King BH, Lindemann R. The quality of health care for adults with developmental disabilities. Public Health Rep 2002;117:174 – 84. 6. Krahn G, Drum CE. Translating policy principles into practice to improve health care access for adults with intellectual disabilities: A research review of the past decade. Ment Retard Dev Disabil Res Rev 2007;13:160 – 8. 7. Chevarley FM, Thierry JM, Gill CJ, Ryerson AB, Nosek MA. Health, preventative health care, and health care access among women with disabilities in the 1994 –1995 National Health Interview Survey, Supplement on Disability. Womens Health Issues 2006;16:297–312. 8. Brown AA, Gill CJ. Women with developmental disabilities: Health and aging. Curr Womens Health Rep 2002;2:219 –25. 9. Parish SL, Saville AW. Women with cognitive limitations living in the community: Evidence of disability-related disparities in health care. Ment Retard 2006;44:249 –59. 10. Kopac CA, Fritz J, Holt RA. Gynecologic and reproductive services for women with developmental disabilities. Clin Excell Nurs Pract 1998;2:88 –95. 11. Beck RS, Daughtridge R, Sloane PD. Physician-patient communication in the primary care office: A systematic review. J Am Board Fam Med 2002;15:25–38. 12. Kopac CA, Fritz J. Ethical concerns in the provision of gynecological and reproductive care for women with developmental disabilities, a nursing perspective. American Network of Community Options and Resources Foundation Monograph; 2005. 13. Lesselier J, Van Hove G. Barriers to the development of intimate relationships among people with developmental disabilities: Their perceptions. Res Pract Pers Severe Disabil 2002;27:69 – 81. 14. Sobsey D, Doe T. Patterns of sexual abuse and assault. J Sex Disabil 1991;9:243–59. 15. Zupanc ML. Antiepileptic drugs and hormonal contraceptives in adolescent women with epilepsy. Neurology 2006;66: S37– 45.
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18. Crino A, Schiaffini R, Ciampalini P, Spera S, Beccaria L, Benzi F, et al. Hypogonadism and pubertal development in PraderWilli syndrome. Eur J Pediatr 2003;162:327–33. 19. U.S. Department of Health and Human Services Web site. Breaking down barriers to health care for women with disabilities: A white paper from a national summit. Available from: www. hhs.gov/od/summit/whitepaper.doc [Accessed April 25, 2008]. 20. Kaplan C. Special issues in contraception: Caring for women with disabilities. J Midwifery Womens Health 2006;51:450 – 6. 21. Messinger-Rapport BJ, Rapport DJ. Primary care for the developmentally disabled adult. J Gen Intern Med 1997;12:629 –36.
22. Cohen J. A power primer. Psychol Bull 1992;112:155–9. 23. Melville CA, Finlayson J, Cooper SA, Allan L, Robinson N, Burns E, et al. Enhancing primary healthcare services for adults with intellectual disabilities. J Intellect Disabil Res 2005;49:190 – 8. 24. Walsh KK, Hammerman S, Josephson F, Krupka P. Caring for people with developmental disabilities: Survey of nurses about their education and experience. Ment Retard 2000;38:33– 41. 25. Henry D, Keys C, Jopp D, Balcazar F. The Community Living Attitudes Scale, Mental Retardation Form: Development and psychometric properties. Ment Retard 1996;34:149 –58.
Don’t Forget JMWH Online-Only Articles The articles that appear exclusively in the online issue of JMWH are peer-reviewed and have been accepted for publication via the same process manuscripts that appear in the print version are subject to. The online-only articles appear in the Table of Contents of each print version, and are fully abstracted in Pub Med. You can access them at www.jmwh.org.
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INTRODUCTION The approximately 2.5 million women with developmental disabilities in the United States face extensive and significant barriers to appropriate reproductive health care.1 Reduced frequencies of medical screenings, deficient or nonexistent approaches to obtaining informed consent for procedures, and limited opportunities to participate in health care decision-making are lamentably commonplace for women with intellectual and developmental disabilities. In addition, women with developmental disabilities may face barriers such as physically inaccessible health care facilities and inattention to or dismissal of their experiences of sexual abuse.1,2 This article describes the development of a multimedia training module for health care professionals and students, and a subsequent effectiveness study. BACKGROUND Researchers have suggested that the disparities in health care access and quality that persons with disabilities face may be accounted for by some combination of: limitations in health care provider education in this area,3 discriminatory attitudes on the part of health care providers,4 the residential conditions of patients with developmental disabilities,5 Medicaid reimbursement patterns,6,7 managed care funding, and difficulty in communicating the nature of complex and sometimes painful medical options to a patient with subaverage
Address correspondence to Sara E. Boyd, MS, Human Development Institute, 8 Mineral Industries Bldg., University of Kentucky, Lexington, KY 40506. E-mail: [email protected]
Journal of Midwifery & Women’s Health • www.jmwh.org © 2008 by the American College of Nurse-Midwives Issued by Elsevier Inc.
intellectual functioning.2,8 Women with intellectual disabilities, a subset of women with developmental disabilities, may experience even more disparity in quality of services due to the low social status of people with intellectual disabilities. Intellectual disability has replaced the term mental retardation as the convention of many professional organizations, including the American Association on Intellectual and Developmental Disabilities (formerly the American Association on Mental Retardation) and the President’s Committee on Intellectual Disability (formerly the President’s Committee on Mental Retardation). This new terminology is described as more accurate, more modern, and less stigmatizing. The terms intellectual disability, mental retardation, and cognitive impairments will be used interchangeably throughout this discussion. Note that the term developmental disability is not synonymous with these terms. Individuals with developmental disabilities experience significant lifelong impairments, but these impairments may not necessarily be cognitive and/or intellectual in nature. A population-based study by Parish and Saville10 found that women with cognitive limitations were 72% less likely than their counterparts without cognitive limitations to have obtained a Pap test within the year before the survey. Women with cognitive limitations were 45% less likely to have obtained a mammogram within the last year, compared to their peers without cognitive limitations. Additionally, the women with cognitive limitations were 49% less likely to report that their health care providers treated them with respect and 48% less likely to report that healthcare providers spent sufficient time with them, compared female peers with453 1526-9523/08/$34.00 • doi:10.1016/j.jmwh.2008.04.017
out cognitive limitations. Other studies examining routine preventative reproductive health care have had similar findings.5,11 Patient satisfaction is an essential measure of quality of care, and has been associated with enhanced decisionmaking involvement and improved compliance with medical recommendations.12 Improving communication between the health care provider and patient may increase patient satisfaction, particularly if the health care provider engages the patient with empathy, friendliness, attentiveness, and positive reinforcement, while encouraging patient questions.12 For individuals with intellectual and developmental disabilities, patient-centered care and a focus on effective communication may be even more imperative. Patients with intellectual and developmental disabilities are not likely to be self-referred for women’s health services; thus, the reason for the health care referral is often based on the perceptions of a family member or other caregiver. Taking a careful history while actively listening to the needs of the patient may
Sara E. Boyd, MS, completed her undergraduate degree in Psychology at the University of Illinois at Urbana-Champaign. She completed her MS in Counseling Psychology and her certificate in Developmental Disabilities at the University of Kentucky. She is currently completing the doctoral program in Clinical Psychology at the University of Kentucky, Lexington, KY. Carla L. Sanders, RN, MS, completed her MS in Rehabilitation Counseling, as well as a Certificate in Developmental Disabilities, at the University of Kentucky. She is currently pursuing her Psychiatric Nurse Practitioner Degree at the University of Kentucky, Lexington, KY. Harold L. Kleinert, EdD, completed his undergraduate degree in Humanities from the University of Louisville. He completed his MA in Special Education at the University of Minnesota and obtained his EdD in Special Education (with an emphasis upon Severe Disabilities) at the University of Kentucky. He is currently the Executive Director of the Human Development Institute at the University of Kentucky, Lexington, KY. Marlene B. Huff, LCSW, PhD, completed her undergraduate degree in Psychology, her MSW, and her PhD at the University of Kentucky. She currently serves as Associate Professor in the Department of Pediatrics at the University of Kentucky College of Medicine, Lexington, KY. Sharon Lock, RN, PhD, completed her PhD at the University of South Carolina and is currently a Graduate Associate Professor of Nursing at the University of Kentucky, Lexington, KY. Stephanie Johnson, RN, BC, MSN, completed her undergraduate degree in Nursing at Capital University. She completed her MSN at Bellarmine University and attained her Post Graduate Certificate in Nursing Education/ Curriculum Development from Kent State University. She is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY. Kim Clevenger, RN, MSN, completed her undergraduate degree in Psychology at Morehead State University. She completed her MSN at Bellarmine University and is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY. Nathania A. Bush, RN, MSN, completed her undergraduate degree in Nursing and her MSN at Eastern Kentucky University. She is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY. Eileen Van Dyke, PA-C, MPS, is currently an Assistant Professor in the College of Health Sciences Division of Physician Assistant Studies at the University of Kentucky, Lexington, KY. Tara L. Clark, RN, MSN, completed her undergraduate degree in Nursing at Eastern Kentucky University. She obtained her MSN at Vanderbilt University and is currently an Assistant Professor of Nursing at Morehead State University, Morehead, KY.
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reveal additional health care concerns often unrelated to the original referral. In a survey of nurses by Kopac and Fritz,13 respondents noted that family members and caregivers sometimes requested medical interventions while ignoring other areas of concern without regard for the patient’s wishes. One respondent noted that family members “request tubal ligations or hysterectomies, sometimes to avoid hygiene issues.” Another respondent stated that, “parents are adamant that their daughter is non-sexual.” A survey by Lesselier and Van Hove14 validated these anecdotal statements and found that some individuals with intellectual disabilities indicated a caregiver disapproved of their sexual desires and indicated that sexual health was either ignored or treated as a problem. Although not all family members or direct service workers endorse these attitudes or engage in these behaviors, these findings underscore the need for health care providers to be able to communicate directly with patients with intellectual disabilities and to investigate patient concerns from the perspective of the patient. In addition to identifying patient concerns and detailing patient history, health care providers may need to solicit information about sensitive or taboo subjects, such as sexual behavior or abuse, that have been ignored or discouraged by significant others. The establishment of healthy rapport will ease patient anxiety and/or fear of negative judgment when discussing such topics. Aside from the importance of providing patient-centered care for women with intellectual and developmental disabilities, there are several medical and psychological concerns associated with this patient population. Distressingly, the prevalence of sexual abuse of people with intellectual and developmental disabilities is shockingly high. A study by Sobsey and Doe15 estimated that nearly 50% of people with intellectual and developmental disabilities will experience 10 or more sexually abusive incidents over their lives. These findings suggest that health care providers should carefully inquire about the presence of a current or past history of abuse with all patients who have intellectual and developmental disabilities. Additionally, providers should be able to make appropriate referrals for existing psychological sequelae of abuse, be alert for signs of sexual abuse (particularly for individuals with impaired communication ability), and learn reporting requirements for the type of abuse noted by the professional. Other considerations when working with patients who have developmental disabilities and are seeking services from a women’s health care specialist include endocrine disturbances associated with epilepsy,16 menstrual hygiene and changes in behavior related to menstruation,17 assessment of sexual knowledge and experience,18 and reproductive health disorders associated with specific genetic syndromes.19 These considerations have been discussed at length, specifically with respect to the practices of midwives and nurse practitioners, by Kaplan.20 Also, Kaplan reports that Volume 53, No. 5, September/October 2008
practicing patient-centered, respectful care with women with disabilities can improve the provision of services to all patients, and that this area of practice can be an opportunity for leadership by midwives and nurse practitioners. In 2004, the US Department of Health and Human Services Office on Disability and Office on Women’s Health convened a national summit, subsequently issuing a white paper that recommended the creation and promotion of health care provider curricula and continuing education programs that specifically address the care of women with disabilities in “areas of competence including attitudes, knowledge, and skills.”21 Even so, the paucity of educational resources and opportunities for health care providers to learn about women with developmental disabilities has been noted by several researchers.9,22 In 2006, largely in response to the problem of health care disparities and a lack of professional educational tools, the Preservice Health Training Project at the University of Kentucky assembled a team of nursing faculty, medical faculty, and social worker/medical faculty, a woman with a disability, and a parent of a young woman with an intellectual disability. The mission of this team was to develop a multimedia educational module for a broad audience of medical professionals, focusing primarily on improving module users’ skills in interacting with patients with developmental and intellectual disabilities. An interactive “virtual patient” format was selected for the instructional design, delivered via CDROM. The CD-ROM format was chosen because at the time the project was conceived, CD-ROMs provided a better vehicle for high-quality video demonstrations than did Web-based applications, and a CD-ROM could serve as a future reference tool for primary care provider students as they entered into clinical practice. The team next devised a scenario that could best illustrate the teaching/learning objectives: A young woman with intellectual disability visiting a primary care provider, complaining of diffuse abdominal pain. The module follows her experience from initial arrival at the clinic through pelvic examination, differential diagnosis, and provision of results by the clinician. The learning objectives and where they were addressed in the module are described in Table 1. An instructional system comprised of Information Point-Decision Point-Video Demonstration (IP-DP-VD) units was employed throughout the interactive cases. In each of these IP-DP-VD units, an Information Point consisting of a concise 1-page summary of pertinent information related to appropriate interaction or medical considerations preceded a question directly related to that information. These Information Point questions were designed as a quick review of case-specific content. Information Points were typically followed by Decision Point questions, which required the user to indicate how he/she would proceed at a particular juncture in the case. Journal of Midwifery & Women’s Health • www.jmwh.org
Information and Decision Points were developed to specifically address module objectives, and required the student user to apply his or her knowledge or skill to the presenting situation. METHODS Upon completion of the module development, the project received institutional review board approval to conduct an effectiveness study with undergraduate nursing students, nurse practitioner students, medical residents, and physician assistant students in two universities. Nursing and physician assistant students took the modules to receive extra credit as part of the class, but participation in the effectiveness study (i.e., the completion of pretests) was voluntary. Medical resident participants did not receive extra credit for completion of the modules; rather, they were encouraged by their instructor to complete the module as part of their rotation. As with the nursing and physician assistant students, participation in the effectiveness study was voluntary. All instruments were coded and participants were instructed to abstain from writing their names on any study materials. All participants were also provided with a letter describing the protocol and the voluntary basis of participation, and told that the responses would be anonymous. The core team was integrally involved in the development of evaluation instruments used in the modules’ effectiveness study. The Disability Situations Inventory– Women’s Health Version (DSI-WH) was developed as a measure of user-perceived difficulty in addressing the needs of individuals with developmental disabilities. This survey was administered before and after completing the modules. The team chose to develop a new instrument because existing questionnaires were insufficiently specific about known women’s health care issues that are frequently problems for patients with intellectual disabilities. Questions were developed based on the core team’s judgment of potentially difficult situations that health care providers need to address in providing women’s health care to patients with intellectual disabilities. Faculty, parent, and consumer team members contributed to the final set of items. The situational items were further selected to reflect the module competencies identified by the Development Team. The inventory consisted of eight items for students to self-rate on a five-point Likert scale. Higher numbers indicated greater perceived difficulty. The item ratings were summed to produce a total score for the inventory. The items are listed in Table 2. Pre- and posttests of multiple choice questions were developed; each consisted of 15 items based upon module content. Knowledge items targeted various healthrelated issues for each case. The pre- and posttests were identical. The knowledge test had items related to topics such as informed consent, guardianship, sedation, preparing office staff to work with patients with intellectual 455
Table 1. Learning Objectives for Users of the Women’s Health Module Student Learning Competencies
Where Addressed in Module
1. Characterize the emotional, cognitive, physical, and medical circumstances typically associated with providing reproductive health care to a woman with developmental disabilities 2. Effectively query patients with developmental and/or intellectual disabilities about their medical history and current symptoms 3. Demonstrate an awareness of the health care issues associated with menarche that may present in women with developmental disabilities 4. Effectively and cautiously consider all appropriate options when a patient demonstrates resistance to the examination 5. Demonstrate an awareness of the problem of sexual abuse of women with developmental disabilities, including physical signs of abuse, prevalence of abuse, and mandated reporting requirements 6. Develop previsit strategies to assist patients in preparing themselves for the exam before the appointment 7. Demonstrate comfort and competence when providing reproductive health and sexual education to patients with developmental and/or intellectual disabilities and their families 8. Demonstrate an awareness of the judicious use of sedation during examination, as well as alternatives to sedation 9. Assess for and implement common and necessary accommodations for the examination of women with developmental and/or intellectual disabilities 10. Demonstrate an understanding of the complexities of informed consent as they relate to the provision of care with women who have intellectual disabilities
Observe in the module as the PCP is careful to both respect Carrie’s autonomy and interact at a pace comfortable for Carrie. Notice that although the PCP begins the health history with Carrie’s staff member present, she specifically verifies the information with Carrie, while offering to conduct the history alone should Carrie so desire Note that issues surrounding hormonal regulation of menstruation are addressed within the module’s clinical interaction Observe the PCP’s calm and attentive manner regarding Carrie’s past negative experience with gynecologic exams. The PCP’s acknowledgement of Carrie’s concern helps foster a cooperative attitude The PCP in the clinical interaction is careful to query Carrie about inappropriate touch and/or unwanted sexual overtures Notice how the module includes information about the use of social stories as an intervention to help diminish anxiety about the gynecologic exam Observe as the clinician discusses issues surrounding Carrie’s sexual activity and knowledge of sexual health care both nonjudgmentally and at a level that Carrie can understand Students will read information points regarding sedation and be queried concerning their comprehension of the topic See the resource document in the module titled “Accommodating Patients.” Notice that the PCP in the video portion of the module has been careful to allow more time for Carrie’s examination Note that the issue of informed consent is directly addressed within the module dialogue, as well as supported by the module resource document “Legal and Ethical Issues”
Student Attitudinal Competencies
Notes/Comments
1. Be sensitive and empathic to the emotional barriers and cultural considerations of women with developmental disabilities, with regard to reproductive health care
Observe as the PCP in this module demonstrates empathic understanding as Carrie relates that she “doesn’t want it to hurt!” Furthermore, the PCP is careful to provide the opportunity for Carrie to see her privately The PCP in the video conducts a nonjudgmental, supportive conversation with Carrie regarding her desire to engage in sexual activity with her boyfriend—at the same time offering sound patient education concerning the prevention of pregnancy and disease Notice in the module that the office staff treat Carrie with genuine, friendly respect. Observe how the nurse helps Carrie to relax via casual conversation and breathing techniques during the difficult portion of the exam Students will read resource materials on sexual abuse in women with intellectual and developmental disabilities and be queried regarding their understanding of the significance of this issue Observe as the PCP in the Women’s Health Module treats Carrie with the same concern and dignity as any other patient by respecting Carrie’s right to healthcare privacy and sexual self-determination
2. Recognize that normal, healthy sexuality is possible for people with intellectual and/or developmental disabilities
3. Strive to create an atmosphere of acceptance and competence for women with developmental disabilities in the office setting 4. Recognize the importance of screening for sexual abuse and the impact of sexual abuse on women with developmental disabilities 5. Apply congruent, profession-specific ethical guidelines/considerations when caring for women with disabilities
PCP ⫽ primary care provider.
disabilities, accommodations in providing a pelvic exam, risk factors for sexual abuse, and communicating with individuals with intellectual disabilities. The knowledge items were scored as either correct (value of 1) or 456
incorrect (value of 0) and then added to produce a total test score that reflected the proportion of items correctly answered. Knowledge items are available, by request, from the corresponding author (S.E.B.). Volume 53, No. 5, September/October 2008
Table 2. Disability Situational Inventory* Some situations that clinicians encounter may be difficult to handle, awkward, or embarrassing. Please evaluate how difficult you would find each of the following situations and circle the number which corresponds to the difficulty on a scale of 1 to 5, with 5 being the most difficult. 1. A new patient (a young woman in her mid-20s) presents for an annual exam. She uses an augmentative communication device to communicate. 2. A woman with cerebral palsy arrives for her appointment with her personal care provider, who informs you that she will require accommodations in positioning for the exam. 3. The parents of a 15-year-old woman with a moderate intellectual disability request that she have an endometrial ablation procedure because of concerns about menstrual management. 4. The mother of a 19-year-old woman with Down syndrome accompanies her daughter to her annual exam. At the end of the exam, she asks you about contraceptive options, expressing fear that her daughter is vulnerable to sexual abuse and may become pregnant. 5. A 40-year-old woman with an intellectual disability tells you that she asked her sister to schedule an appointment with you because of pain and that “a man at work hurt me down there” (gesturing toward her genital area). She does not want to talk about the incident with anyone but you. 6. The personal care attendant of a new patient suggests that she be sedated for her pelvic exam and Pap smear, citing the patient’s “trauma history” and past history of “uncooperativeness” with doctor visits. 7. The guardian of a 21-year-old woman with a moderate intellectual disability asks you if your office prescribes “libido-reducing medications.” 8. A 26-year-old woman with a mild intellectual disability tells you that she and her boyfriend plan to marry and move in together, over their parents’ objections. She says, “I’m my own guardian, but they try to tell me I can’t get married!” *Each item was rated on a Likert scale with 1 ⫽ least difficult and 5 ⫽ most difficult.
Finally, a Usability Scale asked the participants to rate: 1) the need for this program for primary care provider students and practicing primary care providers; 2) general ease of use and navigational features; 3) the accuracy and comprehensiveness of the program content; 4) the value of interacting with a “virtual patient” in improving clinical skills; 5) the value of additional elements in the module, including the information points and resource documents; and 6) any technical problems encountered with the use of the CD-ROM. A five-point Likert scale was used for participant responses. Usability items were averaged individually, because each item was specific to a facet of user-friendliness, and the development team sought to identify specific strengths and weaknesses of the module. For each of the above instruments, data were analyzed using SPSS (version 15.0; SPSS, Inc., Chicago, IL). Every student was provided each of these instruments, along with a copy of the CD-ROM, in a coded packet. Students were instructed to complete the pretests before doing each of the modules, to complete the posttests and Usability Scale after completing the modules, and to return their completed packets to their course instructor. Students were allowed to keep the CD-ROM for future reference.
RESULTS A total of 101 students from the University of Kentucky and Morehead State University participated in the study; this number represents 67% of the students eligible to participate. Of those students, 48 (47.5%) were physician assistant students; 31 (30.7%) were graduate nursing students; 18 (17.8%) were undergraduate nursing students; and 4 (4.0%) were medical residents. The majority (80.2%) of the participants were female. In terms of age, 77.4% of the participants were under 30 years of age, 15.2% were between 31 and 40 years of age, and 5.4% were more than 40 years of age. Participants were not asked to report their ethnicity or race, thus information about these demographic features is not available. Perceived Difficulty Ratings Table 3 presents the pre- and posttest participant ratings for the Women’s Health Disability Situational Scale and results of the pre- and posttest knowledge measures. Of the 101 students who participated in the study, 99 students completed both the pre– and post–Situational Inventories. For these 99 students, the mean pretest score was 23.9 (standard deviation [SD], 4.6) and the mean posttest score was 20.2 (SD, 5.5), with lower scores
Table 3. Disability Situational Inventory (DSI) and Knowledge Test Results Measure
Pretest Mean
SD
Posttest Mean
SD
t-statistic
P value
95% CI
Effect Size
DSI Knowledge
23.9 10.4
4.6 2.3
20.2 12.4
5.5 2.4
7.84 8.46
⬍.001 ⬍.001
2.8–4.6 1.6–2.5
5.0* 9.1*
The knowledge measure has a range of 0 to 15, with higher scores indicating more accuracy. The DSI measure has a range of 12 to 60, with lower scores indicating less perceived difficulty and higher scores indicating more perceived difficulty. 95% CI ⫽ 95% confidence interval of the difference; SD ⫽ standard deviation. *These effect sizes are large, according to Cohen’s 1992 guidelines.22
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indicating greater comfort level. Cohen’s d for this difference is 5.0; this is a large effect size.22 Overall, 92% of students had scores reflecting increased comfort for the scenarios described in the instrument. An analysis of variance (ANOVA) was conducted to assess for differences between student groups, specifically for the nurse practitioner, undergraduate nursing, and physician assistant student groups, on Disability Situational Scale ratings. Results of the ANOVA indicated no support for group differences on this measure (F[3, 95] ⫽ 1.523; P ⫽ .138). It should be noted that the small number of medical residents (N ⫽ 4) resulted in insufficient statistical power to detect a difference in this group, if one exists. Knowledge Measure A total of 99 participants completed both the pre- and posttests. Mean scores on the 15-item test were 10.4 (SD, 2.3) for the pretest and 12.4 (SD, 2.4) for the posttest. Cohen’s d for this difference is 9.1; this is a large effect size.22 The effect size represents a gain in knowledge scores after viewing the modules (i.e., increased accuracy), with an average pretest score for all participants of 69.3% and an average posttest score of 82.7%. An ANOVA was again conducted to assess for differences between student groups, specifically for the nurse practitioner, undergraduate nursing, and physician assistant student groups, on Knowledge test scores. Results of the ANOVA indicated no support for group differences on this measure (F[3, 95] ⫽ 1.120; P ⫽ .345). Usability Scale Eighty-nine students completed the Usability Scale. Students agreed on the need of the program for themselves; their mean rating of 4.05 for themselves fell slightly above the “needed” point on the scale (a rating of 4). When asked for whom the program would be most beneficial, the highest agreement was for second- and third-year students (mean of 4.18 on the 5-point scale). Students rated first-year students as least appropriate users of the program (mean, 3.43; SD, 1.22), providing stronger endorsement for second-/third-year students (mean, 4.18; SD, .93) and practitioners (mean, 4.07; SD, 1.11). Students also felt comfortable in using the CD-ROM– based program. Participants tended to endorse the program’s ease of use, the functionality of onscreen buttons and tools, and the effectiveness of the video clips. Students agreed or strongly agreed that the overall content was accurate and comprehensive and that the resource section contributed to the overall effectiveness of the module. Finally, students strongly agreed that both the Information Points and Decision Points were effective in enhancing their learning. 458
DISCUSSION Overall, the results of the Disability Situational Scale, the Knowledge Measure, and the Usability Scale converge to suggest that participants expressed less perceived difficulty in working with patients with intellectual disabilities following completion of this module. Students also communicated that their knowledge of relevant issues for this patient population was enhanced as a result of completing the Women’s Health Module. Finally, participants’ feedback indicated that they found the interactive virtual patient format easy to use, and they believed there is a need for education related to the needs of women’s health care for patients with intellectual disabilities. Four main limitations are apparent in this study. The first is the lack of a control group. Ideally, researchers would have compared students using these virtual patient type programs with students receiving typical instruction, including clinical experience with patients with intellectual disabilities. Unfortunately, the use of a control group of this type was not within the scope or resources of this particular project. Few students are currently receiving any type of instruction about patients with intellectual disabilities, and the available research suggests that students have limited, if any, clinical contact with patients having intellectual disabilities during their training.23,24 Instead of using a control group of students who were not exposed to any education related to women’s health care patients with intellectual disabilities, the researchers on this project chose to do a within-group study of before and after knowledge and attitudes toward these patients. Additional research is needed to determine the relative effectiveness, cost– benefit ratio, and possible integration of direct clinical experience and simulated patient training. The second limitation of this study was that the measures used were not previously evaluated and validated to ensure that they actually measure our intended constructs. This is particularly problematic with regard to the Disability Situational Scale, which aims to measure changes in perceived difficulty of clinical situations involving patients with intellectual and developmental disabilities. However, although instruments exist to measure attitudes toward people with intellectual disabilities,25 we were unable to locate an existing, validated measure for use with students that addressed women’s health issues specifically. A third limitation was the lack of measurement of participants’ previous amount and quality of experiences with people with disabilities in general, and people with intellectual disability specifically. Questions assessing this experience could have been included within the demographics section of the Usability Scale. A well-researched instrument validated for use with students would likely have generated useful results. To our knowledge, no such standard instruVolume 53, No. 5, September/October 2008
ment for assessing the amount and quality of experiences with people with disabilities exists. The development of such an instrument would be a substantial step forward for research in this area of student education. A final limitation concern is the magnitude of change in the pre- and posttest measures of the Disability Situational Scale. While a strong effect size was detected in our pre- and posttest results in perceived difficulty in addressing women’s healthcare issues for our participants (a Cohen’s d of 5.07 for the difference between the pre- and posttest means), the actual mean change in perception of difficulty was only 3.6 points, or only a 0.45 average change for each of the eight rated items within the 5-point Likert scale. While these results are statistically significant, it is uncertain whether they represent a substantial or clinical difference in perceived difficulty level for study participants. Additional research in this area should focus on the degree to which this type of training, alone or in conjunction with face-to-face clinical training, impacts students’ competencies and attitudes in terms of providing care to women with intellectual disabilities. CONCLUSION The Women’s Health Module represents an opportunity for primary care students to learn more about caring for patients with intellectual disabilities, either as an adjunct to clinical education or when actual clinical exposure is limited or may not be feasible. The study results support the use of the Women’s Health Module to teach midwifery, nursing, nurse practitioner, medical, and physician assistant students respectful, competent, patientcentered care for patients with intellectual disabilities. Future research is indicated in order to more clearly identify and measure constructs of interest (e.g., changes in attitudes toward people with intellectual disabilities, the effect of previous experience on educational gains in this area, etc.). In the meantime, the increased availability of easy-to-use, effective educational tools such as the Women’s Health Module may help to ameliorate the disparities in quality of health care for people with intellectual disabilities. We wish to thank the undergraduate nursing, nurse practitioner, and physician assistant students who participated in the effectiveness study for this module. Additionally, the authors thank Adrianne, Mary, and Paula, who provided invaluable insight and much-needed realism to this project and its products. Finally, the authors wish to acknowledge the Kentucky Council on Developmental Disabilities, which provided much appreciated funding for the Preservice Health Training modules.
Health of women with intellectual disabilities. Oxford: Blackwell Publishing; 2002:22–36. 2. Iezzoni LI. Make no assumptions: Communication between persons with disabilities and clinicians. Assist Technol 2006;18: 212–9. 3. U.S. Public Health Service. Closing the gap: A national blueprint to improve the health of persons with mental retardation. Report of the Surgeon General’s Conference on Health Disparities in Mental Retardation. Rockville, MD: U.S. Department of Health and Human Services; 2001. 4. Gill CJ, Brown AA. Health and aging issues for women in their own voices. In: Walsh PN, Heller T, eds. Health of women with intellectual disabilities. Oxford: Blackwell Publishing; 2002: 139 – 49. 5. Lewis MA, Lewis CE, Leake B, King BH, Lindemann R. The quality of health care for adults with developmental disabilities. Public Health Rep 2002;117:174 – 84. 6. Krahn G, Drum CE. Translating policy principles into practice to improve health care access for adults with intellectual disabilities: A research review of the past decade. Ment Retard Dev Disabil Res Rev 2007;13:160 – 8. 7. Chevarley FM, Thierry JM, Gill CJ, Ryerson AB, Nosek MA. Health, preventative health care, and health care access among women with disabilities in the 1994 –1995 National Health Interview Survey, Supplement on Disability. Womens Health Issues 2006;16:297–312. 8. Brown AA, Gill CJ. Women with developmental disabilities: Health and aging. Curr Womens Health Rep 2002;2:219 –25. 9. Parish SL, Saville AW. Women with cognitive limitations living in the community: Evidence of disability-related disparities in health care. Ment Retard 2006;44:249 –59. 10. Kopac CA, Fritz J, Holt RA. Gynecologic and reproductive services for women with developmental disabilities. Clin Excell Nurs Pract 1998;2:88 –95. 11. Beck RS, Daughtridge R, Sloane PD. Physician-patient communication in the primary care office: A systematic review. J Am Board Fam Med 2002;15:25–38. 12. Kopac CA, Fritz J. Ethical concerns in the provision of gynecological and reproductive care for women with developmental disabilities, a nursing perspective. American Network of Community Options and Resources Foundation Monograph; 2005. 13. Lesselier J, Van Hove G. Barriers to the development of intimate relationships among people with developmental disabilities: Their perceptions. Res Pract Pers Severe Disabil 2002;27:69 – 81. 14. Sobsey D, Doe T. Patterns of sexual abuse and assault. J Sex Disabil 1991;9:243–59. 15. Zupanc ML. Antiepileptic drugs and hormonal contraceptives in adolescent women with epilepsy. Neurology 2006;66: S37– 45.
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18. Crino A, Schiaffini R, Ciampalini P, Spera S, Beccaria L, Benzi F, et al. Hypogonadism and pubertal development in PraderWilli syndrome. Eur J Pediatr 2003;162:327–33. 19. U.S. Department of Health and Human Services Web site. Breaking down barriers to health care for women with disabilities: A white paper from a national summit. Available from: www. hhs.gov/od/summit/whitepaper.doc [Accessed April 25, 2008]. 20. Kaplan C. Special issues in contraception: Caring for women with disabilities. J Midwifery Womens Health 2006;51:450 – 6. 21. Messinger-Rapport BJ, Rapport DJ. Primary care for the developmentally disabled adult. J Gen Intern Med 1997;12:629 –36.
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Don’t Forget JMWH Online-Only Articles The articles that appear exclusively in the online issue of JMWH are peer-reviewed and have been accepted for publication via the same process manuscripts that appear in the print version are subject to. The online-only articles appear in the Table of Contents of each print version, and are fully abstracted in Pub Med. You can access them at www.jmwh.org.
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