This study was approved by the medical school’s institutional review board.
The curriculum was designed to evoke reflections about attitudes, empathy, and the role of advocacy for health care professionals. To ground the educational experience in authentic representation of patients’ experience, I developed a DVD specifically for this curriculum that consisted of narratives by and about persons with disabilities. A total of 11 men and seven women with various types of disabilities were recruited from the university’s office for students with disabilities, physical medicine and rehabilitation clinics, and an association for the visually impaired and blind. I met with and obtained informed consent from each participant and explained that the DVD was being created as an educational tool. Participants were asked to share experiences or other information that they wanted current or future health care professionals to know. They were encouraged to provide an artistic interpretation, for example, a drawing, a poem, or photographs of their experiences. Everyone received a pen, notebook, disposable camera, micro-cassette recorder, and a bag to carry all of these items. Additional artistic supplies were made available when requested. Each person provided written or recorded narratives about their life and health care experiences. After reviewing their narratives, follow-up conversations were held with many of the participants to clarify their material. From the information provided, a 60-min DVD was created. It contains an oral summary of 18 narratives, each linked to one or more images. In some cases, the image is a photo, drawing, or collage that was provided by the individual. If the individual chose not to provide an image, the principal researcher and a colleague, whose formal background includes medical education and the fine arts, selected paintings from gettyimages.com. These images were selected based on the initial emotions perceived from the narratives rather than using a systematic method. Individual music compositions were recorded for each narrative and image pairing to enhance the feelings conveyed.
The student participants were enrolled in health-related courses and were recruited to participate in the study through web-based course sites. Informed consent was obtained online at the link to the surveys, which were administered pre- and post-module. Students who completed all pre- and post-module surveys were entered in a random draw for a $100 Visa gift card. One gift card per course was awarded. The students had approximately 2 weeks to complete the pre-module surveys and 1 week to complete the post-module surveys. Ninety-five students across seven courses completed the pre-IRI, pre- and post-ATDP scale and pre- and post-AMIA. Most of the participants were white females without a disability who were planning to enter a health profession (Table 1).
The curriculum was taught at a large Midwestern university and a local community college in health-related undergraduate courses. For most of the courses, this intervention was the only curriculum content about the psychosocial aspects of disability. However, one course for dental hygienist was about patients with special needs.
The time spent teaching the curriculum ranged from 1 to 3 h. At the request of the course instructors, the principal researcher taught the curriculum in each course. The sessions began with definitions, including disability, health, patient centredness, and advocacy. It was stressed that disability is an umbrella term, making a narrow, specific definition difficult. The sessions also included discussions to engage the students about their experiences with persons with disabilities and advocacy. The students were given background information about how the DVD was made, including the fact that the narratives are in the speakers’ own words and address the following major themes: the fear and desperation they felt when their disability was diagnosed, others’ perception of disability, the desire for independence and acceptance, family support and struggles, and their experiences with medical professionals. In each session, participants spent 20–25 min viewing the DVD and then discussed its content and their impressions. The discussion was initiated by having students answer core questions such as: Which reaction/response did you understand the most or least? Which accommodations are reasonable and how much is enough?
Assessment measures included the Attitude toward Disabled Persons (ATDP), the Attitude toward Microsocial Advocacy (AMIA), and the Interpersonal Reactivity Index (IRI). The ATDP provides an objective and reliable measure of attitudes toward persons with physical disabilities (α = .80) . It was created to measure attitudes toward persons with disabilities in general, rather than toward persons with specific types of disabilities. The ATDP, developed in 1960, continues to be one of the most widely used and tested instruments to measure attitudes toward persons with disabilities . The ATDP has been found to be a reliable measure across different populations, and it is sensitive to changes following instruction. It measures the attitudes of persons with and without disabilities, and validation and replication studies have identified differences in responses by gender . Responses of persons without disabilities are assumed to reflect either acceptance of persons with disabilities or rejection/prejudice, depending on whether they perceive people with disabilities as similar or different and inferior. The responses of persons with disabilities are based on the assumption that most people with disabilities will respond to the questions on the ATDP by using themselves as a frame of reference, which provides information about their self-perception and perception of others with disabilities . The ATDP is a self-report 20-item survey in which respondents use a six-point Likert scale, from (−3) I disagree very much to (+3) I agree
very much, to indicate the extent of their agreement or disagreement with each item. There is no neutral point. Scores range from 0 to 120, with higher scores indicating a more favourable attitude. Individual item responses on the ATDP cannot be interpreted; only total ATDP scores are meaningful. In addition, since the ATDP uses a Likert scale, absolute interpretation of raw scores is not possible because the degree of the attitude expressed by each item is not known .
The Attitude toward Patient Advocacy scale was developed to evaluate nurses’ attitudes toward patient advocacy. For this scale, patient advocacy is conceptualised as a process or strategy consisting of a series of specific actions for preserving, representing, or safeguarding patients’ rights, best interests, and values. Based on this conceptual framework, patient advocacy includes safeguarding patients’ autonomy, acting on behalf of patients, and championing social justice. This scale has two subscales, the Attitude toward Macrosocial Advocacy (AMAA) and the AMIA; however, since the curriculum focuses on microsocial advocacy, only the AMIA subscale was used in the current study. The AMIA contains 45 items and responses are scored on a 6-point Likert scale ranging from (1) strongly disagree to (6) strongly agree, with a high score reflecting strong support for advocacy. In the original validity and reliability studies, the mean for the AMIA (45 items) was 244.67 (SD = 18.17) (α = .92) with scores ranging from 45 to 270. For this study, the AMIA wording was modified to address patients with disabilities and two questions were combined, reducing the total number of items to 44 with scores ranging from 44 to 264.
The IRI was developed to assess the multidimensional nature of empathy. It was designed to capture individual variations in cognitive, PT tendencies as well as differences in the types of emotional reactions experienced . The IRI has been found to be one of the most reliable and valid measures of self-assessed empathy . It has been used with many different groups, including medical professionals. The IRI is a 28-item, self-report questionnaire consisting of four 7-item subscales, each tapping into some aspect of the global concept of empathy. IRI subscale scores range from 0 to 28, with higher scores indicating a stronger manifestation of that dimension of empathy. Respondents indicate for each question how well the item describes them. Responses are scored on a 5-point scale from (0) does not describe me well to (4) describes me very well. The four subscales are: (a) fantasy (FS), which measures the tendency of the respondent to identify strongly with fictitious characters in books, movies, or plays, for example; (b) PT, which measures the ability of the respondent to adopt the point of view of other people; (c) EC, which measures the tendency of the respondent to experience feelings of warmth, compassion, and concern for others undergoing negative experiences; and (d) personal distress (PD), which measures the tendency of the respondent to experience feelings of discomfort and anxiety when witnessing the negative experiences of others.
Significant differences between males and females on all subscales have been identified, with females having higher scores. In Davis’ normative data, the mean scores for the IRI subscales were FS = 18.75 (SD = 5.17), (α = .81); PT = 17.96 (SD = 4.85), (α = .62); EC = 21.67 (SD = 3.83), (α = .70) and PD = 12.28 (SD = 5.01), (α = .76) for females, and FS = 15.73 (SD = 5.60), (α = .79); PT = 16.78 (SD = 4.72), (α = .61); EC = 19.04 (SD = 4.21), (α = .72) and PD = 9.46 (SD = 4.55), (α = .68) for males . Only scores for the individual subscales are meaningful. The IRI was not developed to provide a summation or a total score.
Paired t tests were performed to evaluate the extent of change in students’ performance on the pre- and post-module ATDP scores and AMIA scores. The IRI was only administered pre-module because the aspects of empathy measured by the IRI were not a focus of the curriculum and thus were not expected to change. Pearson correlations were performed to evaluate the magnitude of association between (a) the IRI subscales and pre- and post-ATDP scores, and (b) the IRI subscales and pre-and post-AMIA scores. This resulted in 16 different correlation tests; therefore Bonferroni’s correction for multiple tests was calculated.