Title: Dr.
University: University of Minnesota
Email: pigoz002@umn.edu
Twitter: N/A
Website: N/A
Description of Work:
My work in the rhetoric of health and medicine is situated in the immigrant Latinx community. Understanding how members of that community comprehend health information is a first step to developing usable, effective health communications and consent practices. My research to date has been exploring that comprehension and examining whether the communications being used are addressing the social and cultural needs of this specific audience.
Using data from my research, I have created a model that describes in detail the social context of the research participants. The social context directly affects the way people hear health communications, creating their “terministic screen.” With that in mind I can better examine the efficacy of the communications used in a consent conference as well as examine the patient’s level of autonomy.
My current project is looking at clinical consent. I am creating a computer-based Instruction tool (CBI) that will use audio visual (video) to present the following sections: physiology of condition/procedure, treatment, alternatives, and risks and benefits. The patient will have the option of repeating each section as many times as they wish. Each section will end with a short (4-5 question) quiz;; the correct answer will be provided if the patient makes an error. A pre- and post-test will be built into the program as well as a short demographic questionnaire. The CBI will be constructed using an iterative usability process. Participants for this project will be clinic patients who have indicated they prefer to communicate in Spanish. The clinicians will randomly assign patients to study groups. Group 1 will serve as a control group and receive the consent information in the standard manner. Group 2 will serve as the intervention group and use the CBI prior to discussion with the clinician. Both groups will take the pre- and post-tests. Additionally, I will interview a portion of both groups after the consent process has been completed. This will produce both quantitative (from the tests) and qualitative data.
Symposium Submission:
¿Entiende?
Informed consent is a necessary step in clinical treatment, ideally serving to protect legal and ethical rights of both patient and physician. However, as Hall, Prochazka, & Fink note, consent “…is variably practiced and rarely achieves the theoretical ideal (2012, p.533). How to determine an individual has comprehended the information presented during an informed consent process is a complicated and multi-‐faceted question. Equally complicated and challenging is how to facilitate that comprehension.
For recently immigrated Latinos, 34.4% of the 55.3 million Latinos in the U.S. (Stepler & Brown, 2016), comprehension can be particularly challenging. Along with limited English language skills, they may be unfamiliar with the medical system in the U.S., may be unfamiliar with Western medicine, may have limited knowledge of the etiology of their illness, and may be unfamiliar with medical, physiological, and legal vocabulary. These factors affect their level of health literacy and add complications to the execution of informed consent. These factors also influence an individual’s autonomy, affecting the validity of a consent. The information presented in a conventional manner may be incomprehensible to members of this community. It is ethically important to work to ensure comprehension. Park et al. (2017) notes, “…better comprehension leads to augmented autonomy and a greater sense of control for the patient” (p. 828). The research described in this proposal is a response to this situation seeking to improve the quality of clinical consent for this population.
This presentation describes a pilot study exploring the efficacy of a localized, computer-‐based instruction (CBI) tool to communicate informed consent information to immigrant Latinx with little to no English language proficiency.
Background literature review
While I was not able to locate literature that described research on consent conference communication aids that targeted this specific population, there has been much research on this topic done with English speakers. The research includes a variety of communication aids in different formats such as print, audio, and audio/visual.
Consent research on communication aids
There have been several literature reviews on consent studies that incorporate communication aids (e.g. Cohn & Larson, 2007; Schenker, Fernandez, Sudore & Schillinger, 2011; Dunn & Jeste, 2001). The findings have been disparate, with one review reporting that none of the communication aids increased comprehension, and the others reporting some, or all, of the communication aid interventions did improve comprehension. Especially noted was the effectiveness of the computer-‐based multimedia/video aids.
Research on CBI targeted to immigrant Latinx
As noted, I have not located literature discussing the use of CBI to explain informed consent information to immigrant Latinx with low English language skills. However, CBI has been used to train this population on job safety techniques (Anger, Tamulina, Uribe, and Ayala, 2004) and to educate individuals on health topics (Leeman-‐Castillo, Beaty, Raghunath, Steiner, and Bull, 2010). Both studies showed definitive knowledge gain for individuals with limited English language and literacy skills. Though the research on the effectiveness of communication aids for informed consent has been inconclusive, the research mentioned above strengthens the choice of multimedia as the format and informing the media choice for this study.
Use of CBI for Latinx immigrants: further considerations
Simply translating existing English language consent materials into Spanish will not necessarily ensure comprehension. Literature (e.g. Elder, Ayala, Parra-‐Medina, & Talavera, 2009) suggests that to ensure understanding and efficacy, the CBI must be tailored for the Latino audience.
As part of successfully tailoring the communication aid, usability studies with the community targeted to receive that communication needs to be done (Anger, Tamulina, Uribe, and Ayala, 2004; Bickmore et al., 2009, and Williams, Tappen, Buscemi, Rivera, Lezcano, 2001). More recently, Renguette’s (2016) work on a patient education software application demonstrated the use of both localization and usability. I am extending this approach in this project.
Pilot study[1]
Computer-‐based Instruction tool (CBI)
The CBI will be created with the help of Liberal Arts Technologies & Innovation Services (LATIS), who will provide the necessary technological expertise. Responding to literature that demonstrates greater comprehension using a multimedia tool, the CBI will use audio visual (video) to present the following sections: physiology of condition/procedure, treatment, alternatives, and risks and benefits. The patient will have the option of repeating a section. Each section will end with a short (4-‐5 question) quiz; the correct answer will be provided if the patient makes an error. A pre-‐ and post-‐test will be built into the program as well as a short demographic questionnaire. This tool will be constructed using an iterative usability process which includes:
- Observation of standard, verbal consent process for the identified procedure
- Discussion with clinicians (content experts) on the content of CBI
- Create user profile
- Construct low-‐fidelity prototype
- Review low-‐fidelity prototype by clinician followed by an interview
- Test low-‐fidelity prototype using a cognitive walkthrough by representative patient followed by an interview
- Changes made as identified
- Construct CBI
- Perform heuristic evaluation
- Review CBI by clinicians
- Perform usabilitytesting on CBI with 5 representative patients
- Changes to CBI made as identified
Methodology
Participants: Clinic patients who indicate they prefer to communicate in Spanish
The clinicians will randomly assign patients to study groups. Group 1 will serve as a control group and receive the consent information in the standard manner. Group 2 will serve as the intervention group and use the CBI prior to discussion with the clinician. Both groups will take the pre-‐ and post-‐tests. Additionally, I will interview a portion of both groups after the consent process has been completed. This will provide quantitative (from the tests) and qualitative data.
By the time of the conference I intend to have the CBI completed.
References
Anger, W. K., Tamulinas, A., Uribe, A., Ayala, C. (2004). Computer-‐based training for immigrant Latinos with limited formal education. Hispanic Journal of Behavioral Sciences, 26(3), 373-‐389.
Bickmore, T. W., Pfeifer, L. M., Paasche-‐Orlow, M. K. (2009). Using computer agents to explain medical documents to patients with low health literacy. Patient Education and Counseling, 75, 315-‐320.
Cohn, E., Larson, E. (2007). Improving participant comprehension in the informed consent process. Journal of Nursing Scholarship, 39(3), 273-‐280.
Dunn, L. B., Jeste, D. V. (2001). Enhancing informed consent for research and treatment. Neuropsychopharmacology, 24(6), 595-‐607.
Elder, J.P., Ayala, G. X., Parra-‐Medina, D., Talavera, G. A. (2009). Health communication in the Latino community: Issues and approaches. Annual Review of Public Health, 30, 227-‐251.
Hall, D. E., Prochazka, A. V., Fink, A. S. (2010). Informed consent for clinical treatment. Canadian Medical Association Journal, 184(5), 533-‐540.
Leeman-‐Castillo, B., Beaty, B., Raghunath, S., Steiner, J., Bull, S. (2010). LUCHAR: Using computer technology to battle heart disease among Latinos. American Journal of Public Health, 100(2), 272-‐275.
Park et al. (2017). Educational and interactive informed consent process for treatment of unruptured intracranial aneurysms. Journal of Neurosurgery, 126, 825-‐830.
Renguette, C. (2016). Technical communication, academic research, and patient education: A multidisciplinary collaboration. Technical Communication, 63(4), 365-‐374.
Schenker, Y., Fernandez, A., Sudore, R., Schillinger, D. (2011). Interventions to improve patient comprehension in informed consent for medical and surgical procedures: A systematic review. Medical Decision Making, Jan-‐Feb, 151-‐173.
Stepler, R., Brown, A. (2016). Statistical portrait of Hispanics in the United States. Retrieved from http://www.pewhispanic.org/2016/04/19/statistical-‐portrait-‐of-‐hispanics-‐in-‐the-united-‐states-‐key-‐charts/
Williams, C.L., Tappen, R., Buscemi, C., Rivera, R., Lezcano, J. (2001). Obtaining family consent for participation in Alzheimer’s research in a Cuban-American population: strategies to overcome the barriers. American Journal of Alzheimer’s Disease and Other Dementias, 16(3), 183-‐187.
[1] I have received a grant from the College of Liberal Arts via the Joan Aldous Innovation Fund to conduct this study.