Developing transition planning for youth living with severe and persistent mental illness requires the creation, memorialization, and retrieval of appropriate and responsive treatment preferences to meet their needs, especially during a mental health crisis. Regrettably, transition-aged youth at the age of 18 can no longer rely on their support persons (typically family caregivers) to consent to care during a mental health crisis. Due to this, caregivers expressed challenges conveying information about their loved one’s preferences for care (Lavoie, 2018) during a crisis. This lack of access to patient information exchange during a mental health crisis can effect treatment decisions. Caregivers report a range of negative outcomes including traumatic events resulting in distrust of the health care system (Lester et al., 2005). While misinformation is typically thought of as the deliberate falsification of information, we explore misinformation as both omission and lack of access to patient information, in this case health information. But what happens when a caregiver is distrustful of the health care system? What influence does distrust have on disclosure of health information? The purpose of this paper is to understand how caregivers trust of the healthcare system effects their decision regarding the sharing of health information on behalf of a person experiencing a mental health crisis. Using a mixed methods approach, this paper provides the results of Texas wide online survey regarding disclosure of healthcare information during a mental health crisis. This study expands the understanding of misinformation and the consequence of when information is withheld from individuals and healthcare systems, that can result in clinical decisions based on misinformation. The data provides preliminary evidence to suggest that the role of distrust of the medical system plays a part of the decision to not disclose health information. Open ended responses also suggest a relationship of how lack of information can lead to misinformed decisions. Practical recommendations call for applications in which capacitated persons living with serious mental illness and their caregivers collaborate on the sharing and memorialization using a psychiatric advance directive (PAD). A psychiatric advance directive (PAD) is not only a communication tool it is a medical-legal document that promotes patients’ autonomy giving capacitated adults living with serious mental illnesses the ability to record their preferences for care during a mental health crisis (Table et al., 2020).
Key Take Away Points
The results of this study show:
- The relationship of distrust (β = 0.68) indicated a positive association; as distrust in healthcare systems increased, disclosure avoidance also increased
- The impact of misinformation around outcomes, in turn reduces trust and self-disclosure in the future.
Virginia A. Brown, MA, PhD recently joined The Hastings Center as a research scholar in social justice and population health. Prior to this she was faculty at the University of Texas at Austin Dell Medical School where she served as an assistant professor in the department of population health in the division of Community Engagement and Health Equity and as the associate director of the Liberal Arts Honors program in the College of Liberal Arts. Her expertise focuses on protecting the autonomy of persons living with serious mental illness using psychiatric advance directives. She uses the tools of social science to recognize and respond to ethical issues in health and health care as public issues rather than personal troubles. To that end, as a public sociologist, her scholarship seeks to “engage multiple publics in multiple ways.” She works to respond to health and health care inequity at the individual, community, and institutional level and as she writes, this gives her “the moral courage to speak truth to power.” At The Hastings Center, Dr. Brown continues her research by expanding her inquiry to include attending to the question, “What does bioethics owe justice?” This inquiry involves working collaboratively to expand The Hastings Center’s research on public engagement. Christine Thomas, MS is a member of the DISRUPT Lab (DISRUPTLab.org) at Dell Medical School in the Department of Population Health. She earned her master’s degree in Demography with concentrations in health disparities and mental health. The DISRUPT lab is a place where we discover new approaches, implement community interventions, support transformative education, research across disciplines, uplift all voices, practice and theorize. The lab seeks to find new and innovative ways to protect the autonomy of persons living with serious mental illness during a mental health crisis.
We want thank the following individuals for their expertise and assistance throughout all aspects of our study and writing process: Billy Table, Oshyn Sky, Phillip Schnarrs and Nazan Aksan.
Brown, Virginia A. and Thomas, Christine
"Disrupting the Cycle of Medical Distrust Between Caregivers and the Health Care System For Persons Living With Serious Mental Illness: What Does Misinformation Have To Do With It?,"
Journal of Applied Research on Children: Informing Policy for Children at Risk: Vol. 13:
2, Article 5.
Available at: https://digitalcommons.library.tmc.edu/childrenatrisk/vol13/iss2/5
Responses to this Article:
Jamie L. Wood, Investing in Trust to Mitigate Misinformation (October 2023)